MENTAL ILLNESS IN NURSING HOMES: “AGENDA FOR RESEARCH = Edited by Mary S. Harper, Ph.D., R.N., F.A.A.N. Barry D. Lebowitz, Ph.D. Mental Disorders of the Aging Research Branch Division of Clinical Research U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Public Health Service Alcohol, Drug Abuse, and Mental Health Administration / National Institute of Mental Health (Vv -$.) 5600 Fishers Lane Rockville, Maryland 20857 This book was partially written under Contract Number 278-83-0004 from the National Institute of Mental Health (NIMH). The opinions expressed herein are views of the authors and do not necessarily reflect the official position of the NIMH or the U.S. Department of Health and Human Services. Mary S. Harper, Ph.D., R.N., F.A.A.N. Coordinator, Long-Term Care Programs, served as the NIMH Project Officer. All material appearing in this volume except quoted passages from copyrighted sources is in the public domain and may be reproduced or copied without permission from the Institute or the authors. Citation of the source is appreciated. 7334 151Y Pui DHHS Publication No. (ADM) 86-1459 Library of Congress Catalog Card Number 86-600535 Printed 1986 ii FOREWORD The Nation's nursing homes are rapidly becoming a major institutional site for the long-term care of the elderly men- tally ill. The National Nursing Home Survey of 1977 reveals that close to 60 percent of nursing home residents have seri- ous mental, behavioral, or emotional disorders. Nursing homes currently account for 29 percent of the total national expenditure for care of the mentally ill--more than State, county, and other public mental hospitals combined. Yet, despite the number of mentally ill persons residing in nursing homes, the anticipated increases in the number of such patients, and the large expenditures for their care, the special mental health needs of elderly persons in nursing homes are not being effectively addressed. Few nursing homes provide any mental health services; those that do, often do not know how to most effectively deliver such services and lack the staff capability to do so. A national focus on the needs of the elderly mentally ill in nursing homes is long overdue. The publication of this vol- ume of papers by noted experts in the fields of mental health, aging, and long-term care underscores the recognition by the National Institute of Mental Health (NIMH) of the importance of this issue. The papers highlight the substantial gaps in our current knowledge concerning mental illness in nursing homes--the prevalence and etiology of specific disorders, the demographic characteristics of the population in need, and the effectiveness of selected interventions. They also provide recommendations for a national research agenda to address the multiple issues involved in providing quality mental health services to the elderly mentally ill, particularly those in nursing homes. The volume also summarizes the findings and recom- mendations of the first national conference devoted to this topic. That conference, titled "Mental Illness in Nursing Homes: An Agenda for Research," was held in the fall of 1983 under the auspices of NIMH at the Hebrew Home of Greater Washington in Rockville, Maryland. Over 250 participants representing a broad spectrum of disciplines in the mental health and long-term care professions, as well as governmental policymakers at the administrative and legis- lative level, attended the conference. The discussions and ensuing research recommendations contributed greatly to our knowledge and understanding of the complex issues in- volved in providing effective mental health services to the elderly in nursing homes. iii While the recommendations in this volume do not necessarily reflect the policy of NIMH or the Alcohol, Drug Abuse, and Mental Health Administration or its endorsement of specific conclusions, we believe the volume as a whole provides a sound framework for developing an infor med research agenda to serve the mental health needs of the elderly in the Nation's nursing homes. We are pleased for the opportunity to focus on this vital national issue. Shervert H. Frazier, M.D. Director National Institute of Mental Health iv TABLE OF CONTENTS FOrewordic vse esi sens sos svsavsnsesesnstnsns vn on PrefaCe. ss sss sires sn sssasssoanssssessenesss ow Acknowledgments « «cco vite iii iii iii Chapter I. Introduction. «..eeeeeeeeeneeeeennnns Mary S. Harper, Ph.D., R.N., F.A.A.N. Chapter 2. Trends of Institutionalization and Prevalence of Mental Disorders in Nursing Homes .... Morton Kramer, Sc.D. Chapter 3. Nursing Home Study of the Eastern Baltimore Epidemiological Catchment Area Study « sv vee PEAR NE UB RAR CR Ge RE GRE RR Pearl S. German, Sc.D., Sam Shapiro, and Morton Kramer, Sc.D. Chapter 4. Major Mental Disorders/Problems in Nursing Homes: Implications for Research and PUDHC POLICY sev vin cms vn vn wamun ows wn omens Benjamin Liptzin, M.D. Chapter 5. Major Mental Health Problems in the Nursing Home: A Medical Director's Perspective .... Charles N. Still, M.D. Chapter 6. Interface of Emotional and Behavioral Conditions with Physical Disorders in Nursing HOMES seen revennnnnssenseescnssnsneesenss Kenneth Sakauye, M.D. Chapter 7. Alzheimer's Disease in Nursing Homes: Current Practice and Implications for Research. ..... Burton V. Reifler, M.D., M.P.H. Chapter 8. Assessment and Treatment in Nursing Homes: Implications for Research « « cc cece ve ee ens Richard R. Bootzin, Ph.D., and William R. Shadish, Jr., Ph.D. Chapter 9. Behavioral Approaches for Enhancing Mental Health in the Nursing Home .............. Carol J. Dye, Ph.D. Chapter 10. Polypharmacy and Altered Pharmacokinetics in Nursing Homes ......cccvvenn Darwin Zaske, Pharm.D. and Tracy S. Hunter, M.S. iii ix xiii 27 41 57 65 83 95 111 129 Chapter 11. Health Promotion in Long-Term Care . ... 14] Meredith Minkler, Dr.P.H: Chapter 12. The Role of the Family in Nursing Homes: Implications for Research and Public POLICY 40 00 34 05 a eB sn Sa Cm 6S UR KU BEB GW iB 5b & 159 Elaine M. Brody, M.S.W. Chapter 13. Environmental Impact on Mental Health and Functioning in Nursing Homes: Implications for Research and Public Policy « + «cco... 181 Martin V. Faletti, Ph.D. Chapter 14. Manpower in Nursing Homes: Implications for Research « ¢ ec ctv ete teen eee 193 Carol Lindeman, R.N., Ph.D., F.A.A.N. Response to Manpower in Nursing Homes: Implications for Research ....... 206 Joyce C. Fitzpatrick, Ph.D., F.A.A.N. Chapter 15. The Development of a Research Center in a Nursing Home: Model for Future Scientific Inquiry or Institutional Anomaly? ........ 209 Fred D. Hirt and Elliott J. Stern Chapter 16. Mental Health Nursing: Research in Nursing Homes . vc ve eve etiiiiiiieeeeenenes 221 May H. Wykle, Ph.D., R.N. Chapter 17. Mental Health in Nursing Homes: Behavioral and Social Research. ................ 235 Rosalie A. Kane, DSW Chapter 18. Ethical Considerations and Morale in Nursing Homes: Implications for Research. ...... 247 A. Teresa Stanley, R.N., D.N.Sc. Chapter 19. Nursing Homes and the Mental Health of Minority Residents: Some Problems and Needed Research « «ceo v Cees teecsrarssarann 267 Wilbur H. Watson, Ph.D. Chapter 20. Collaboration Between Mental Health Centers and Nursing Homes: Research Issues ....cveeeeieeeeeeceneennnces 281 Jonathan L. York, Ph.D. Chapter 21. Federal Reimbursement for Long-Term Care of the Mentally ll . . ...... Rane 287 Tom Jazwiecki, MBA, CPA, and Steve Press, J.D. Chapter 22. The Conference on Mental Health and Nursing Homes: An Agenda for Research. ...... 299 Mary S. Harper, Ph.D., R.N., F.A.A.N. vi Chapter 23. Implications of Changing Concepts of Dementia for Nursing Homes. « vv vee teen nnnn. 309 Marshal F. Folstein, M.D., Mary Jane Lucas, R.N., C., and Barry Rovner, M.D. Chapter 24. Future Directions for Research ...... .. 32] Mary S. Harper, Ph.D., R.N., F.A.A.N. Bibliography. « ee eevee vn cee en Re 337 Appendix A. Conference Agenda ......vvveeunn.. A-1 Appendix B. Steering Committee Members and Observer-Participants .....ieeeeeeeeeeeneenn. B-1 vii PREFACE The development of mental health research in nursing homes has been neglected although more than half (56 per- cent) of all nursing home residents suffer from a chronic mental condition. Elderly persons are increasingly being shifted out of the mental health system and into nursing homes that are not equipped to deal with such problems. From 1969 to 1973, the number of nursing home residents with diagnosed mental health problems doubled (to a total of 194,000) (U.S. Bureau of the Census 1983, p. 16). Therefore, many of the Nation's nursing homes have become major in- stitutions for the long-term care of the mentally ill elderly. Some of the emotional, behavioral, and mental dis- orders that are frequently observed in nursing home resi- dents include depression, confusion, wandering or restless- ness, disorientation, agitation, lethargy, irritability, stress, rise and fall of self-esteem, guilt, inappropriate dependency on staff, and paranoid delusion (American Psychiatric Asso- ciation 1971, p. 70). In the United States, there were 2.5 million health care beds in 1977, of which 1.4 million (57 percent) were in nurs- ing homes (American Health Care Association 1984). The 23,600 nursing homes in the United States employ 1,431,000 people (Human Resource Issues, n.d.); more than 70 percent of these employees are practical nurses or nurses' aides, ap- proximately 10 percent are registered nurses, and less than 2 percent are physicians. There is not one full-time board- certified psychiatrist in any of the 23,600 nursing homes in the United States. In spite of the tremendous need for mental health re- search in nursing homes, the National Institute of Mental Health (NIMH) has received very few applications for fund- ing such research. NIMH reports only six studies specific to care of the mentally ill aged in nursing homes between 1967 and 1980. Therefore, in October 1983, NIMH convened about 250 scholars, clinicians, data managers, researchers, health pro- viders, nursing home administrators, and practitioners to (1) identify and analyze some of the emerging issues, objec- tives, opportunities, and needs for mental health research in nursing homes; (2) identify the resources in nursing homes, community, and academia for mental health research; (3) identify specific research needs and topics; and (4) identify the barriers to research in nursing homes. ix Knowledge of emergent trends in the psychosocial processes of aging is essential for the planning, develop- ment, and implementation of measures that can improve the quality of life and prevent, postpone, reduce, or ameliorate emotional, behavioral, and mental disorders in the elderly-- as well as major age-related diseases. The 24 chapters in this volume cover such topics as epidemiology of mental illness in nursing homes, research issues and needs, polypharmacy research needs in the nurs- ing home, issues in assessment and evaluation, treatment modalities, outcomes of the conference on mental illness in nursing homes, recommendations for mental health research in nursing homes, and the underrepresentation of minorities in nursing homes. Many of the chapters are based on papers that were pre- sented at the First National Conference on Mental Illness in Nursing Homes; other chapters are commissioned papers or were written by the editor. Therefore this book represents a collaborative effort among scholars and individuals from academia, the nursing home industry, State and Federal Governments, nursing home org=~i-~tions, corporations, and institutes on aging. Thus, this book should serve as a standard reference--but a reference that is encyclopedic rather than dogmatic. Mary S. Harper, Ph.D., R.N., F.A.A.N. Editor Barry Lebowitz, Ph.D. Co-Editor References American Health Care Association. Facts in Brief on Long Term Health Care. Washington, D.C.: The Association, 1984. American Psychiatric Association. The Aged and Com- munity Mental Health: A Guide to Program Develop- ment. Group for the Advancement of Psychiatry, Vol. VIII, Report No. 81. Washington, D.C.: The Association, Nov. 1971. U.S. Department of Health, Education and Welfare. Human Resource Issues in the Field of Aging: The Nursing Home Industry (Revised). HEW Pub. No. (OHDS) 80-20093. Washington, D.C.: U.S. Govt. Print. Off., 1932. U.S. Bureau of the Census. America in Transition: An Aging Society, by Tauber, C.M. Series P23, No. 128. Washing- ton, D.C.: U.S. Govt. Print. Off., Sept. 1983. Xi ACKNOWLEDGMENTS We would like to acknowledge the invaluable contributions of time, knowledge, advice, experience, wisdom, and encour- agement from the many people who made the conference and this publication possible. This publication represents the major accomplishments of the first National Conference on Mental Illness in Nursing Homes. A unique feature of the conference was its being held in a nursing home, thereby affording an opportunity for both nursing home staff and residents to participate. We are grateful to the officials and staff of the Hebrew Home of Greater Washington: especially Mr. Samuel Roberts, execu- tive director; Mr. Carl Gershman, administrator; and Mrs. Shulamith Weisman, director of human services. We wish to acknowledge the observations, comments, and insights shared by the residents of the nursing home and to extend special appreciation to the resident who videotaped some of the conference sessions and showed the tape to other resi- dents confined to bed or the ward, soliciting their reactions and comments. We are indebted to the steering committee who reviewed and analyzed the state-of-the-art research in mental health/ mental illness in nursing homes. After their review, analysis, and evaluation, they identified essential topics and resource people to serve as presenters, discussants, and consultants. The steering committee also suggested the conference for- mat. The members of the steering committee are listed in appendix B. We wish to thank Dr. Carol Allen for her contributions in the scientific review and editing of this manuscript. All of the staff of the Mental Disorders of the Aging Research Branch provided valuable assistance in planning and conducting the conference. We also wish to acknowledge the role and contributions of other Federal agencies and nursing home organizations such as the National Coalition for Nursing Home Reform, the American Health Care Association, the American Associa- tion of Homes for the Aged, the American Association of Health Care Administrators, the National Council of Health Care Centers, the American Association of Retired Persons, the National Association of State Mental Hospital Directors, the National Institute on Aging, the Administration on Aging, the Veterans' Administration, the Division of Nursing of the Health Resources and Services Administration, the National xiii Institute on Alcohol Abuse and Alcoholism, the National Institute on Drug Abuse, and the Office of the Chief Nurse, U.S. Public Health Service. Mary S. Harper, Ph.D., R.N., F.A.A.N. Coordinator, Long-Term Care Programs and Barry D. Lebowitz, Ph.D. Chief, Mental Disorders of Aging Research Branch National Institute of Mental Health xiv CHAPTER 1 INTRODUCTION Mary S. Harper, Ph.D., R.N., F.A.A.N. Coordinator, Long-Term Care Programs Mental Disorders of Aging Research Branch National Institute of Mental Health Rockville, MD The issue of mental illness among the Nation's elderly population, long ignored by policymakers, caregivers, and researchers alike, has received growing attention in the past decade. In 1971, the U.S. Senate Special Committee on Aging published a landmark report, Mental Health and The Elderly: Shortcomings in Public Policy, which pointed out the magnitude of the problem of mental illness among the aging and the almost total lack of response directed to its solution. In the ensuing years, many positive developments have aimed at redressing the situation: a Secretariat-level committee was formed to make recommendations to Con- gress on ways to improve the mental health care of the Na- tion's elderly; a Presidential Commission on Mental Health with a task panel on the elderly was established; and a Men- tal Health Systems Act and Community Mental Health Center legislation with special provisions for care of the aging were enacted. Despite this growing focus on the mental health prob- lems of the elderly and some positive resulting actions, one segment of the aged population in need of mental health services remains singularly ignored--the estimated 750,000 elderly mentally ill who reside in the more than 23,600 nurs- ing homes in this country. According to a recent report of the National Institute of Mental Health (NIMH), nursing homes are now the largest single setting for the care of the mentally ill in this country, exceeding the number of mentally ill in State mental institutions by some 600,000 (USDHHS 1981). The dramatic shift in the care of the elderly mental ill from State mental hospitals to nursing homes, coupled with the tremendous growth in the nursing home population as a whole and an accompanying increase in the numbers of resi- dents with mental conditions, has found nursing homes al- most totally unprepared to deal with the magnitude of the problem. Indeed, few nursing homes provide any specialized mental health services to their residents. Who Are the Mentally Ill in Nursing Homes? One of the major problems in developing a national ap- proach to the care and treatment of the mentally ill in nurs- ing homes is the lack of precise knowledge about the size of the population in need and the prevalence of particular be- haviors and disorders. Few studies have been undertaken to try to determine the scope of the problems. Data from the most comprehensive survey of mental illness in nursing homes to date, the National Nursing Home Survey of 1977 published by the National Center for Health Statistics, has many shortcomings, primarily because it utilized broad and imprecise categories of mental disorders. Compounding this problem is the fact that few nursing homes conduct precise diagnostic assessments of the mental health status of their residents. Thus there is likely to be considerable underre- porting of mental illness among residents of nursing homes. The statistics that follow, drawn from the NCHS survey, are at best only approximations. Nevertheless, they give a broad indication of the magnitude of the problem. ° 750,000 nursing home residents (more than half of all the 1.3 million nursing home residents) have a primary or secondary diagnosis of mental illness. ® Of this total, 250,000 (or approximately | out of 5 nursing homes residents) have a primary diagnosis of mental disorder--e.g., depression, presenile and senile dementia, or psychosis. ° Another 100,000 residents may potentially have a primary diagnosis of mental disorder, although their medical records indicate another condition. ° An estimated 400,000 (or 30 percent of all nursing home residents) have senility without psychosis. The NCHS survey classifies the remaining 550,000 nurs- ing home residents as ostensively free of mental disorders. We have serious reason to doubt this conclusion. This group includes substantial numbers of individuals who are not af- flicted with diagnosable mental disorders, yet who experi- ence symptoms indicating mental distress--including emo- tional problems stemming directly from their nursing home placement. This group can reasonably be considered "at risk" of developing more serious emotional, cognitive, or behavioral problems unless appropriate care is undertaken. The Nonresponsiveness of the System We lack comprehensive national data on the extent to which nursing homes provide any, let alone appropriate, mental health services, but all existing evidence points to an almost total failure in this regard. It is the rare nursing home that provides any mental health oriented services to their residents. Why has the nursing home industry been so unresponsive to the needs of the mentally ill? A number of factors would seem to be at work: ® Nursing homes have lacked the financial resources and staff to handle the great influx of mental pa- tients that has resulted from the deinstitutionali- zation of the Nation's mental hospitals. ® Nursing homes lack staff, both professional and paraprofessional, specifically trained in the care of the mentally ill. Aides and orderlies provide an 80 to 90 percent of the care to the elderly in nurs- ing homes. Not one nursing home in the country has a full-time psychiatrist on staff. ° Many people believe that mental problems are a "normal" and irreversible facet of aging. Thus they view attempts at intervention as a waste of effort. ° Current reimbursement systems (Medicaid and Medicare) provide limited coverage for mental health services. Lack of assured reimbursement for mental health care discourages the assess- ment, diagnosis, and proper treatment of mental illness in nursing homes. ° State and Federal regulations do not require nurs- ing homes to provide mental health services. Homes are neither delicensed nor decertified for not providing psychiatric services to mentally ill residents. The Demographic Imperative The number of elderly persons requiring mental health services is expected to increase substantially in the years ahead. The average age of nursing home residents is ex- pected to be greater, suggesting an increased prevalence of serious physical and mental debilities. The continued growth of the aging population, the high prevalence of mental problems among the elderly, and the continuing anticipated growth of the number of elderly who will need nursing home care all point to an increase in the number of persons living in nursing homes who will have diagnosable mental disorders. Consider the following: ° Those at highest risk of requiring nursing home care are persons age 75 and over (and more par- ticularly those age 85 and over) and women living alone. The over-75 age group is the fastest grow- ing age group in the United States today (U.S. Bureau of the Census 1980). - In 1982, nearly 2.5 million persons were age 85 or over. By the year 2000, the number of persons age 85 or over will nearly double--to more than 5.1 million persons. - The number of older women who will spend part of their later years living alone is rising as the gap in life expectancy between women and men continues to increase. At age 75, about 7 out of 10 women are widows. Among persons age 75 and over, there are 185 women for every 100 men. Among persons age 85 and over, the difference increases to 250 women per 100 men. These statistics are significant because while only 5 percent of persons age 65 and over live in nursing homes, 10 percent of persons age 75 and over do so, and 20 percent of those 85 and older do. Moreover, women in nursing homes outnumber men by a ratio of more than 2.5 to 1. These statistics point to a continuing growth in the number of older persons--particularly women--who will need nursing home care. The growing number of very old people underscores further the predicted surge in the number of persons in nursing homes suffering from mental disorders. We know that among the community-dwelling elderly (i.e., those not in institutional care), the incidence of certain mental disorders (especially psychosis and the senile demen- tias) increases substantially with age. Depression also af- flicts substantial numbers of the elderly. Studies estimate that 10 percent of the noninstitutionalized elderly suffer from clinically diagnosable depression (U.S. Dept. of HEW 1980). Even more suffer from less serious manifestations of depression. As the elderly population continues to grow at its projected pace, new admissions to nursing homes will surely include an increasing number of elderly individuals with diagnosable mental disorders. The number of residents who develop an emotional or mental disorder during the course of their nursing home stay is also likely to rise. Meeting the Needs of the Mentally Ill in Nursing Homes: The Challenge Ahead Enhancing the quality of life of nursing home residents is an objective shared by many concerned persons. Whether this objective is achieved will depend largely on improving the quality of mental health services provided to nursing home residents. This will require a multifaceted approach encompassing the following: ° Gaining greater knowledge of the nature and ex- tent of the mental health problems of nursing home residents; ° Improving the capacity to accurately diagnose mental disorders in nursing home residents and selecting the most appropriate intervention; ® Improving the capacity of nursing home staffs to deliver such care; and ° Creating a nursing home environment which fosters positive mental health and optimal functioning. The key issue addressed by the papers in this volume is to identify what research is required to accomplish the goal of improving the quality of life of the Nation's nursing home residents through ensuring that their mental health needs will be more appropriately met. While we need to continue to seek appropriate alterna- tives to nursing home care, we believe that nursing homes will continue to be the focal point for the care of the el- derly who are mentally ill or at highest risk of becoming so. Thus we, as a humanitarian society, need to assure that this care is the best that our knowledge and efficient use of available resources will allow us to provide. References U.S. Bureau of the Census. Projections of the Population of the U.S. by Age, Sex and Race, 1983-2080. Current Popu- lation Reports, Series P-25, No. 952. Washington, D.C.: U.S. Govt. Print. Off., May 1980. U.S. Department of Health and Human Services. Care of the Mentally Ill in Nursing Homes. Addendum to National Plan for the Chronically Mentally Ill. DHHS Pub. No. (ADM)81-1077. Washington, D.C.: the Department, 1981. U.S. Department of Health, Education and Welfare. Mental Health and the Elderly, Recommendations for Action: The Reports of the President's Commission on Mental Health, Task Panel on the Elderly, and the Secretary's Committee on the Mental Health and Illness of the Elderly. Pub. No. (OHDS) 80-20960. Washington, D.C.: U.S. Govt. Print. Off., 1980. CHAPTER 2 TRENDS OF INSTITUTIONALIZATION AND PREVALENCE OF MENTAL DISORDERS IN NURSING HOMES Morton Kramer, Sc.D. Professor, Department of Mental Hygiene Johns Hopkins University School of Hygiene and Public Health Baltimore, MD This chapter discusses the following: (1) national data on the changes between 1950 and 1980 in the institutional population of the United States; (2) resultant changes in the patterns of use of mental health services; (3) the status of national data on numbers of persons in nursing homes by age, diagnosis, race, sex, sociodemographic variables, and length of stay; (4) a model for studying the population dy- namics of nursing homes; and (5) recommendations for ac- quiring data on the prevalence and incidence of specific mental disorders and associated physical conditions among patients in nursing homes. Trends in the Institutional Population, 1950-1980 It is instructive to review trends with respect to the total number of institutionalized persons for several rea- sons. First, factors affecting the use of any one type of institution (for example, mental institutions) can have both a direct and indirect effect on the use of other institutions (such as nursing homes and, in some instances, correctional institutions). Second, these trends reflect changes in the way a society uses the various institutions it has created. The population trends for institutions are governed by the rate at which persons are admitted to specific types of institutions as well as by their lengths of stay and the rates at which they are returned to the community or die while institutionalized. The following factors affect the population size of the various types of institutions: (1) social legislation that en- courages or mandates programs that affect the flow of people into and out of a specific type of institution; (2) discoveries for treatment of diseases that reduce or eliminate the need for institutional care or make possible shorter durations of stay in the institution; (3) demographic changes, particularly those that result in the creation of groups at high risk for institutional care; (4) skyrocketing costs of general hospital and domiciliary care that make it financially impossible to provide care for persons with chronic diseases in the community; (5) societal conditions and problems that are associated with high risk for mental disorders, crime, delinquency, and other types of psycho- social problems; (6) racist and other discriminatory prac- tices that influence who gets institutionalized in a specific type of facility; (7) insufficient and inadequate community programs that could reduce admissions to an institution or facilitate release of inmates to the community; and (8) inappropriate living arrangments in the community for per- sons with chronic and disabling conditions. These factors are discussed at some length in a recent paper by this author (Kramer 1977). Trends in the Specific Types of Institutional Populations Table | provides a breakdown of institutionalized per- sons and the corresponding rates of institutionalization per 100,000 population from 1950 to 1980 for three major types of institutions; mental institutions, homes for the aged and dependent, and correctional institutions. Collectively, these three types of institutions have housed 75 percent or more of the institutionalized popu- lation during this period. However, striking changes oc- curred in the rank order of these three types of institutions during this 30-year period. In 1950 mental institutions (in- cluding mental hospitals and residential treatment centers) accounted for the largest number of institutionalized per- sons (613,600 or 39 percent of the total), followed by homes for the aged and dependent (296,800, or 17 percent of the total). All other types of institutions combined accounted for 391,800 persons, or 25 percent of the total. By 1980 homes for the aged and dependent accounted for the largest number (1,426,400, or 57 percent of the total), followed by the correctional institutions (466,400, or 19 percent of the total), and mental institutions (255,300, or 10 percent of the total). All other institutions accounted for 344,000, or 14 percent of those in institutions. Table 2 shows the percentage change in utilization of these three major institutions and in the corresponding rates per 100,000 population. Between 1950 and 1980, the total population of the United States increased by 50 percent (from 151.3 million to 226.5 million). The institutional pop- ulation as a whole increased somewhat more rapidly, by 59 percent. However, the population in homes for the aged and Table 1. Distribution of institutionalized persons, 1950-1980 Type of institution and total population 1950 1960 1970 1980 of U.S. Number (000's) Mental institutions! 613.6 630.0 433.9 255.3 Homes for aged and dependent 296.8 469.7 927.5 1,426.4 Correctional institutions 264.6 346.0 328.0 466.4 All others 391.8 441.3 437.3 344.0 Total 1,566.8 1,887.0 2,126.7 2,492.1 Percentage Mental institutions! 39.2 33.4 20.4 10.2 Homes for aged and dependent 18.9 24.8 43.6 57.2 Correctional institutions 16.9 18.3 15.4 18.7 All others 25.0 23.5 20.6 13.9 Total 100.0 100.0 100.0 100.0 Number per 100,000 population of U.S. Mental institutions! 405.5 351.3 213.5 112.7 Homes for aged and dependent 196.1 261.9 456.4 629.7 Correctional institutions 174.8 193.0 161.4 205.9 All others 259.0 246.1 215.3 152.0 Total 1,035.4 1,052.3 1,046.6 1,100.3 Total population of U.S. 151,326 179,323 203,302 226,546 I"Mental institutions" include mental hospitals and residential treatment centers. Table 2. Percentage change in distribution of institutionalized persons, 1950-1980 Total population 1950 1960 1970 1950 of U.S. and type to to to to of institution 1960 1970 1980 1980 Percentage change in numbers Total population of U.S. 18.5 13.3 11.4 49.7 All institutions 20.4 12.7 17.2 59.1 Mental institutions! 26.8 -31.7 -41.2 -58.4 Homes for aged and dependent 58.3 97.5 53.8 380.6 Correctional institutions 30.8 -5.2 42.2 76.3 All others 12.6 -1.0 -21.3 -12.2 Percentage change in rates per 100,00 population All institutions 1.6 -0.5 5.1 6.3 Mental institutions! -13.4 -39.2 47.2 -72.2 Homes for aged and dependent 33.5 74.3 40.0 221.1 Correctional institutions 10.4 -16.4 27.6 17.8 All others -5.0 -12.5 -29.4 -41.3 I"Mental institutions" include mental hospitals and residential treatment centers. 10 dependent increased by 38 percent and that in correctional institutions increased by 75 percent, while the population of mental institutions decreased by 58 percent. The percentage change in the rates of institutionaliza- tion per 100,000 population during this period reflects the relative change in the population of the specific type of in- stitution compared to that of the total population of the United States. Thus, the ratio of the relative increase in the population of homes for the aged and dependent was 3.2 times that of the general population. Stated differently, the population of homes for the aged and dependent increased 22] percent faster than the general population while the population of correctional institutions increased about 18 percent faster than the general population. The population of mental institutions decreased by 58 percent compared to the 50 percent increase in the general population. This re- sulted in a 72 percent decrease in the population rate of mental institutions as compared to the general popula- tion--from 406 per 100,000 in 1950 to 113 per 100,000 in 1980. Changes in Locus of Care of Persons with Mental Disorders The striking decrease in the number of persons in men- tal institutions resulted from a series of actions that changed the primary locus of care of persons with mental disorders from the large State hospitals to community-based services (Kramer 1977; Regier and Taube 1981). These actions included the following: ® Federal and State legislation that mandated the development of community-based programs for diagnosis, treatment, and rehabilitation of persons with mental disorders; ° Development and expansion of outpatient psy- chiatric services, psychiatric units in general hospitals, and community mental health centers; ° Development and use of psychoactive drugs; ° Development of procedures to prevent inappro- priate placements of persons in State mental hospitals and other procedures to reduce length of stay of persons admitted to these hospitals; and ® Expansion of nursing homes and other facilities for the aged as a result of title 19 of the Social Security Act in 1965 (Medicaid) and the 1965 amendents to the act (Medicare). As a result of these and other actions, the number of persons in State mental hospitals dropped from a high of 11 559,000 in 1955 to 140,355 in 1979, a decrease of 75 percent (NIMH 1983, fig. 4). But while the mental hospital popula- tion was decreasing, the use of other mental health facili- ties was increasing. From 1955 to 1977, the number of patient care episodes in all facilities increased from 1.7 million to 6.9 million, an increase of 306 percent; the num- ber of episodes per 100,000 population increased by 188 per- cent--from 1,028 to 2,964 (NIMH 1980). Changes in Patterns of Care for the Aged Trends among persons 65 years and over in mental institutions. We are particularly interested in the changes that have occurred in the use of State mental hospitals by aged persons with mental disorders. In 1946 and 1955, rates for first admissions to State mental institutions reached a high of about 240 per 100,000 persons age 65 and over. By 1972, the admission rate for this age group dropped to about 75 per 100,000, 69 percent lower than in 1955, and to 40 per 20050 in 1975, 83 percent lower than in 1955 (Kramer 1956). Between 1965 and 1979, the number of elderly patients in State mental hospitals dropped from 773 per 100,000 to 164 per 100,000, a decrease of 79 percent (Kramer 1977; NIMH 1983). The decrease reflected not only reductions in first admissions, but increased placement of aged residents in nursing homes and the release of others to the community. Trends in the number of nursing care and related homes. From 1963 to 1976, the number of beds in nursing care and related homes increased from 568,560 to 1,406,778, an increase of 147 percent. These numbers include homes with nursing care, personal care homes (with or without nursing), and homes offering domiciliary care only.! Dur- ing the same period, the number of beds in State psychiatric hospitals decreased from 614,104 to 244,358. The number of beds in nursing care and related homes per 1,000 population increased 120 percent from 3.0 to 6.6, while the number of psychiatric beds decreased from 3.3 to 1.3 per 1,000 popu- lation, a decrease of 67 percent. As of 1976, the number of beds in nursing care and related care homes exceeded the number of beds in general medical and surgical hospitals (1,069,828). IFor definitions of the different types of nursing homes, refer to appendices II and IV of the 1977 National Nursing Home Survey (NCHS 1981). 12 Trends in the demographic characteristics of the resi- dents of nursing homes. The National Center for Health Statistics (NCHS) uses the terms nursing and related care homes and nursing homes interchangeably (NCHS 1983). We will use the term nursing homes in the remainder of this paper.2 NCHS has conducted several surveys that have provided data on the demographic characteristics of the residents of nursing homes. The number of nursing homes increased from about 13,0003 in 1963 to about 18,900 in 1977, a 45 percent increase. During the same period, the number of nursing home residents increased from 491,000 to 1,303,000, an increase of 165 percent (NCHS 1981; U.S. Bu- reau of the Census 1975). More recently, NCHS (1983) re- ported that in 1980 there were 23,065 nursing homes in the United States with 1,396,132 residents. These numbers rep- resent a 22 percent increase in the number of such homes and a 7 percent increase in the number of residents since 1977 (a 3-year period). Trends in nursing home utilization by race and sex: 1963-1977. For persons of all races combined, the number of persons in nursing home beds on an average day increased from 25.4 per 1,000 persons age 65 or over in 1963 to 47.9 in 1977, an increase of 89 percent. The rate for white persons increased from 26.6 per 1,000 persons age 65 and over in 1963 to 49.7 in 1977, an increase of 87 percent, while the corresponding rate for blacks and other races increased from 10.3 to 30.4 per 1,000, an increase of 195 percent. The nursing home utilization rate remained considerably higher for elderly white people than for blacks and other races. To illustrate, in 1963 the rate among elderly white people (26.6 per 1,000 persons 65 and older) was 2.6 times the rate for 2The NCHS definition of nursing homes has remained the same over the years of the National Master Facility In- ventory Surveys (NMFI). The definition states basically that a home must maintain three or more inpatient beds and pro- vide one or more personal care services (such as help with eating, walking, correspondence, shopping, dressing, bathing, or massage). While this definition has remained constant, the coverage of the NMFI has not. Due to changes in col- lection coverage starting in 1976, certain types of facilities have been added and others deleted. For more details, the reader is referred to NCHS Advance Data for August ll, 1983 (NCHS 1983). 3This number excludes 2,927 personal care homes without nursing and 688 domiciliary care homes. 13 nonwhites (10.3). As a result of the considerably greater relative increase between 1963 and 1977 in the use of nurs- ing homes by nonwhites, this ratio decreased to 1.6 in 1977 (for whites, 49.7; for blacks and others, 30.4). Despite the considerably increased use of nursing homes among blacks and other races, minorities still constitute only about 7 per- cent of nursing home residents age 65 and over. The preceding figures showing nursing home utilization for the entire population age 65 and over mask some much more dramatic increases for certain age subgroups within the 65-and-over age group. For example, as of 1977, 14.5 per 1,000 persons of all races aged 65-74 were in nursing homes, compared to 215.4 per 1,000 persons age 85 and over, a l5-fold difference. Among whites, the rates in- creased from 14.2 per 1,000 for persons age 65-74 to 229.0 for persons age 85 and over, a l6-fold difference. For the nonwhites, the corresponding rates from 16.8 per 1,000 to 102.0 per 1,000 (a six-fold difference). We also see sizable sex-specific differences in nursing home use, with elderly women considerably more likely than elderly men to end up in nursing homes. As of 1977, women age 65 and above were almost twice as likely as men that age to be in nursing homes (59.7 per 1,000 vs. 30.7 per 1,000 respectively). Moreover, this ratio increases with age. In the 65-74 age group, the female-to-male ratio is 1.25 in- creasing to 1.80 for the 85-and-over age group. Thus, in 1977, females accounted for 74 percent of the total nursing home population age 65 and over, while males accounted for 26 percent. The sex difference is also reflected in the marital sta- tus distributions of residents age 65 and over in nursing homes. Thus, 78 percent of the female residents in this age group are widowed as compared to 46 percent of the males. Variations in nursing home utilization among the regions of the country. NCHS has recently reported the distribution of nursing homes and nursing home beds in 1980 by regions of the country (NCHS 1983). Of the 23,065 nurs- ing homes, 8,252 (36 percent) were located in the North Central States; 5,745 (25 percent) in the Western States; 5,306 (23 percent) in the Southern States; and 3,762 (16 per- cent) in the Northeastern States. Comparing the number of nursing home beds per 1,000 population age 65 and over by region, the North Central region had the highest rate (78.0), followed by the West (63.4), the Northeast (53.1), and the South (49.6). The National Nursing Home Survey of 1977 (NCHS 1981) provided data on selected demographic characteristics 14 of nursing home residents in five States: California, Illi- nois, Massachusetts, New York, and Texas. In Massachu- setts, the State with the highest number of nursing home beds per capita (90 beds per 1,000 persons age 65 and over), about 7 percent of the elderly were in nursing homes. In New York, with about 50 beds, and California with about 60 beds per 1,000 population age 65 and over, about 5 percent of the elderly resided in nursing homes. In Texas and Illi- nois, each with about 80 beds per 1,000 population age 65 and over, about 6 percent of the elderly lived in nursing homes. The percentage of female residents varied from 77 percent in Massachusetts to 67 percent in Texas, while the percentage of white persons (not including Hispanics) varied from about 99 percent in Massachusetts to about 84 percent in Texas. Ownership of nursing homes. The vast majority of nursing homes are operated for profit (NCHS 1983). Of the 23,065 homes included in the 1980 survey, 81 percent were proprietary, 15 percent were owned and operated by non- profit organizations, and 4 percent were government oper- ated. Of the 1,537,338 nursing home beds, 70 percent were in proprietary homes, 22 percent in nonprofit homes, and 8 percent in government operated homes. Prevalence of Mental Disorders Among Residents of Nursing Homes The NCHS surveys of nursing homes provide very lim- ited data on the prevalence of mental disorders among nurs- ing home residents. To illustrate, the 1977 National Nursing Home Survey gives the number and percentage of residents who, at their last examination, had a primary diagnosis of mental disorder or senility without psychosis and the number and percentage of residents who had a mental disorder or senility without psychosis as a chronic condition (NCHS 1979). The primary diagnosis at last examination as reported in the survey was the condition reported by the nursing staff respondent as the major diagnosis recorded on the resident's medical record at the resident's last medical examination. Only one primary diagnosis was recorded for each patient. The conditions were based on the International Classifica- tion of Disaster--8th revision (ICD-8) adapted for use in the United States (NCHS 1968). The chronic conditions and im- pairments as reported in the surveyinclude the long-term physical and mental problems of the resident selected by the 15 nursing staff respondent from a list of 37 conditions and im- pairments (NCHS 1979). The respondent based the selection on knowledge of the resident's health and a check of the resident's medical record. More than one chronic condition or impairment could be recorded for one patient. As of 1977, about 20 percent of the residents of nursing homes were reported as having a primary diagnosis of men- tal disorder or senility without psychosis. Within this group of disorders, the leading diagnosis was chronic brain syn- drome, reported for 7.4 percent of the residents. Other psychosis (not specified) was the primary diagnosis for 4.4 percent, mental retardation for 3.3 percent, senile psychosis for 1.6 percent, alcoholism for 0.5 percent, and other men- tal disorders for 1.2 percent. Senility without psychosis was reported for 2.0 percent (see table 3). Among mental disor- ders reported as a chronic condition, chronic brain syndrome was reported for nearly one-fourth of the residents and seni- lity unspecified for about one-third of the residents. The National Nursing Home Survey of 1973-74 (NCHS 1977) reported that mental disorder was the most prevalent primary diagnosis of residents under 65 years. The primary diagnosis rate of mental disorders dropped dramatically as age increased, from 396 per 1,000 for persons under 65 years to 31 per 1,000 for persons 85 years and older. The 1977 survey also reported the frequency of specific behavioral problems (NCHS 1981). Nearly 66 percent of all nursing home residents exhibited some type of behavioral problem. The most frequent problem reported was de- pressed or withdrawn behavior (35 percent); followed by agitated, nervous, or hyperactive behavior (34% percent); abusive, aggressive, or disruptive behavior (17 percent); wandering (11 percent); and other behavioral problems (9 percent). Younger residents (under 65 years) exhibited behavioral problems more often than did older residents in all categories except depressed or withdrawn behavior and wandering. Expected Increase in Nursing Home Population and Its Implications We have already seen the very large increases in the population of nursing homes since 1963. The numbers of elderly persons requiring nursing home care will contribute to increase as the number of aged persons in the population increases during the next 25 years. We projected the nurs- ing home population for the year 2005 by applying the age-, 16 Table 3. Frequency of Mental Disorders and Senility Without Psychosis Among Nursing Home Residents Diagnosis at last examination chronic Diagnosis Primary condition Number of residents Total 266,100 Data not available (DNA) Mental illness (unspecified)? 148,300 Chronic brain syndrome 96,400 324,700 Senility (unspecified)? 416,400 Senile psychosis! 21,200 Senility without psychosis! 26,600 Other psychosis! 57,400 Mental retardation 42,400 79,800 Alcoholism 6,800 36,900 Drug addiction? % Other mental disorders! 15,300 Insomnia? 125,500 Percentage of 1,303,100 residents Total 20.4 Data not available (DNA) Mental illness (unspecified)? 11.4 Chronic brain syndrome 7.4 24.9 Senility (unspecified)? 32.0 Senile psychosis 1.6 Senility without psychosis! 2.0 Other psychosis b.4 Mental retardation 3.3 6.1 Alcoholism 0.5 2.8 Drug addiction? x Other mental disorders! 1.2 Insomnia? 9.6 Source: National Nursing Home Survey of 1977 (NCHS 1979), I This diagnostic term was used as a primary diagnosis but not as a chronic condition. 2This diagnostic term was used as a diagnosis of a chronic condition but not as a primary diagnosis. *Diagnosis of insufficient magnitude to record. 17 race-, and sex-specific rates for persons in nursing homes for the 1977 survey to the estimated age-, race-, and sex- specific distributions of the overall population of the United States. The results are shown in table 4. Table 4. Projected effect of population changes on number of residents of nursing homes Nursing Home Residents Black/ Year Total White Other 1980 1,413,331 1,308,583 104,748 2005 2,090,253 1,936,144 154,109 Increase 676,922 627,561 49,361 Increase (percentage) 49.9% 48.0% 47.1% We projected the number of nursing home residents would increase between 1980 and 2005 from 1,413,331 to 2,090,253, an increase of 48 percent. The number of white residents would increase from 1,308,583 to 1,936,144, and for blacks and other races from 104,748 to 154,109. Need for Essential Data on the Nursing Home Population The recent NIMH-sponsored conference "Mental Illness in Nursing Homes: An Agenda for Research" highlighted the many problems currently associated with the care of persons with mental disorders in nursing homes and the urgent need for providing better services to these persons. This chapter has also highlighted the limited data on the prevalence of mental disorders among these residents. These data consist of prevalence rates of broad categories of disorders based on a primary diagnosis of mental disorder at the last exam- ination and the proportion of patients having a mental dis- order as a chronic condition. The diagnostic data are very inadequate, providing only gross diagnostic categories. In addition, the diagnostic categories used to describe the dis- tribution of the primary diagnoses contain conditions for which there are no counterparts in the distribution of chronic conditions and vice versa. Such data are of very 18 limited use in planning treatment programs for patients with mental disorders. Moreover, we believe the reported data significantly underestimate the prevalence of mental disorders as a pri- mary or chronic condition among nursing home patients. One indication of this is the high proportion of patients receiving tranquilizers. Data from the 1977 National Nurs- ing Home Survey reported that about 36 percent of the 1,303,100 residents received tranquilizers in the week prior to data collection. More detailed data from the 1973-74 survey (NCHS 1981) reported that of 1,032,000 residents in that survey 890,000, or 86 percent, received medication the week prior to the survey. Of those receiving medication, almost half (48 percent) received tranquilizers (the most frequently prescribed medication). The projections we presented previously indicate that the number of mentally ill patients in nursing homes will certainly increase during the remainder of this century. Accordingly, appropriate data is urgently needed to assist administrators and planners in the development of programs to deal more effectively with the problems posed by nursing home residents with mental disorders. Some recommenda- tions for obtaining such data follow. Need for Data on Characteristics of New Admissions The data on the prevalence of mental disorders pro- vided by the National Nursing Home Surveys are based on the total resident population of nursing homes. Other data are provided for discharges and deaths. Such data are of relatively limited use in planning for inpatient services for persons with mental disorders. More important, these data do not provide information on the demographic and diagnos- tic characteristics of newly admitted patients. Data refer- ring specifically to new admissions to nursing homes are very important and long overdue. Need for Data Derived from Cohort Studies of New Admissions Distributions of age, sex, race, and diagnosis for all nursing home residents as of a single day can differ con- siderably from the corresponding distributions of age, sex, race, and diagnosis of first admissions during a year. The resident population is a residue population consisting of the survivors of cohorts of patients admitted from the date the institution opened to the date of the survey. It is a hetero- geneous mixture of the residues of various cohorts of pa- tients admitted over long periods of time and depleted 19 through release and death at differential rates specific for age, sex, diagnosis of the patient, and other factors that have influenced the inflow and outflow of patients during the history of the nursing home. To illustrate, the population enumerated in the 1977 National Nursing Home Survey consisted of patients who had been admitted at widely varying times prior to the date of the survey. Thus we find the following with respect to the 261,000 patients in that survey with a primary diagnosis of mental disorders (NCHS 1979): ° 18 percent had been in the nursing home for 6 months; ° 10 percent had been in the home for 6 to 12 months; ® 35 percent had been in the home for | to 3 years; and ° 37 percent had been in the home for 3 years or more. Thus, nearly three-fourths of the residents had been there for a year or more. As a result of the differential rates of release and deaths, the diagnostic distribution of nursing home residents on the survey date is heavily weighted with long-stay pa- tients (i.e., patients who have been in the nursing home for | year or more). Such distributions will be quite different from the diagnostic characteristics of first admissions to these homes. We can illustrate this concept with data comparing the diagnostic composition of the first admissions to State hos- pitals and of all patients in these hospitals as of 1950. For example, schizophrenics constituted 24 percent of the first admissions that year but 46 percent of all residents. Mental diseases of the senium constituted 26 percent of first ad- missions and 12 percent of all patients. The median age of schizophrenic first admissions was 32 years and of all schizophrenic residents 48 years, a difference of 16 years. The median age of the first admissions with diseases of the senium was 73 compared to 75 for all patients with such diseases. These differences are accounted for by the dif- ferential rates of release and retention of the admissions of these two groups of patients (Kramer et al. 1955). To throw greater light on the differential rates of re- tention, release, and death of patients admitted to mental hospitals, the National Institute of Mental Health developed a model reporting area for mental hospital statistics that required all States in a given area (1) to develop systematic, uniform data on first admissions, resident patients, releases, 20 and deaths, and (2) to carry out cohort studies of new admis- sions. The results of the cohort studies provide important new information that assists in the planning and evaluation of hospital services for the mentally ill and provides impor- tant new data for policy decisions and research. Recently, Liu and Manton (1983) carried out a cohort study of admissions to nursing homes. They studied the retention and discharges among a national cohort of 1,163,876 admissions in 1976. They constructed this cohort from the National Nursing Home Survey of residents in 1977 and the survey of discharges during 1976 (NCHS 1979) using a procedure they describe in considerable detail in the ar- ticle cited. From this sample of nursing home admissions, Liu and Manton determined the proportion of admissions during a 12-month period that were discharged during the same year. (The authors emphasize that these rates are not measures of the probability of a nursing home admission being discharged within 12 months. The latter type of probability requires following each member of a cohort of admissions for | full year or longer as was done in the model reporting area cohort studies of new admissions to mental hospitals.) Liu and Manton formulated the major results of their study as follows: Nursing homes are widely perceived to be long-term residential facilities for old people who have a multiplicity of chronic conditions requiring continuing nursing care. This percep- tion results in a large part from the assessment of the characteristics of the institutionalized population available from cross-sectional sur- veys. This method for collecting data on the institutionalized population over-represents the long stay patients, since short stay patients from prior admission cohorts have been selec- tively discharged. The view of nursing home patients derived from the annual cohort of new patients presents a very different perception of who is using nursing homes. In this paper, we presented data showing that an admission cohort contains high proportions of patients with characteristics normally associated with short lengths of stay. In fact, we found that a large proportion of the patients who were ad- mitted in 1976 were also discharged in the same year. As a consequence of their short-term use of nursing homes, the proportion of annual days 21 consumed by the admission cohorts is remark- ably small. The results of our analysis corrob- orate findings from previous studies (Keeler et al. 1981; Liu and Palesch 1981) that nursing homes are extensively used for short-term re- habilitative purposes as well as long-term resi- dential care. In the process, we have presented some preliminary estimates of the magnitude of the flow of short-term patients through the nursing home system. These results are similar to those derived from studies of mental hospitals in which resident patient data was found to provide an incomplete and misleading picture of the out- come of mental hospitalization. Just as cohort studies have provided valuable insights into the population dynamics of mental hospitals, they can provide new insights into the population dynamics of nursing homes. However, the question remains as to how to obtain reliable and valid diagnostic data on the flow of patients with the multitude of conditions found in nursing home pa- tients. Ideally, one would subject each patient being ad- mitted to a nursing home to a complete physical, mental, psychiatric, and neurological examination that would be carried out uniformly and consistently by each nursing home. However, such a procedure does not seem feasible at this time. Recommendations for Obtaining These Data To obtain the much-needed diagnostic data on nursing home residents, we recommend that a committee be ap- pointed by NIMH to accomplish the following: L. Explore the possibility of obtaining uniform, reli- able diagnostic data on all persons admitted to nursing homes so as to establish baseline data with respect to the diagnosis of physical and men- tal disorders presented by the patient at the time of admission and other relevant data specified in the long-term care minimum data set (National Committee on Vital and Health Statistics 1980); and 2. Explore the possibility of setting up a model re- porting area for nursing home statistics to en- courage the development of cohort studies of new admissions as well as the development of uniform cross-sectional tabulations of annual admissions, discharges, and deaths. 22 Recommendations for Other Types of Research Pathways to the Nursing Home We also need research that will provide more precise quantitative information concerning factors that lead to a person being admitted to a nursing home. The National Nursing Home Surveys provide data on residents of nursing homes specific for major demographic variables such as age, sex, race or ethnicity, marital status, prior living arrange- ments, primary reason for care, and primary source of pay- ment. However, comparable distributions are not available for new admissions to nursing homes at the time of admis- sion. Liu and Manton have provided a set of such data for admissions specific for age, sex, marital status, primary payment source, primary diagnosis, and disability. These baseline data also provided the basis for their cohort study of new admissions. Another source of data on admissions to nursing homes will be obtained from the surveys being carried out as part of NIMH's Epidemiological Catchment Area (ECA) studies (Eaton et al. 1981; Regier et al. forthcoming). Subjects in the ECA survey of sample households are interviewed twice with an interval of | year between interviews. This inter- lude provides an opportunity to obtain rates of admission to nursing homes for persons 65 years and over by various demographic variables, diagnosis of specific mental dis- order, living arrangements, use of various health services, social networks, Medicare, Medicaid, and other types of health insurance. This followup of cohorts consisting of a probability sample of aged persons living in the community provides an unusual opportunity to learn more about factors that lead to nursing home placement as well as factors that may prevent such placement. We recommend, therefore, that the following be done to generate data on new admissions to nursing homes and on factors that lead to nursing home placements: l. Make a concentrated effort to obtain for ad- missions to nursing homes data on age, sex, marital status, payment source, primary diag- nosis, associated chronic conditions, disabilities, and related information; and 2. Explore the possibilities of following up subjects in the probability samples of aged persons estab- lished in the ECA surveys to determine factors that lead to (or prevent) nursing home placements. 23 Differences in White and Nonwhite Rates of Utilization of Nursing Homes The National Nursing Home Surveys consistently show that the resident patient rate for blacks and other nonwhites is considerably lower than that for whites. One hypothesis to explain the lower rates of nursing home use among blacks and other nonwhites is the greater availability to them of informal home care (NCHS 1981). However, other factors may also be involved. Here again, the differences between the white and nonwhite rates are based on overall patient rates, which are a function of number of admissions and durations of stay. We lack information on differential ad- mission rates for whites and nonwhites and differential probabilities of release, death, or retention. We recommend that a major survey be undertaken to determine the factors that explain the differences between white and nonwhite resident patient rates in nursing homes. ECA Survey of Nursing Homes The Epidemiological Catchment Area studies are devel- oping data on the prevalence and incidence of specific men- tal disorders in a sample of nursing home patients as well as in households. The following paper, by Dr. Pearl German, discusses what specific information the ECA surveys will provide with respect to the prevalence of mental disorders in nursing homes and the needs of the residents for mental health services. References Eaton, W.W. et al. The epidemiologic catchment area program of the National Institute of Mental Health. Public Health Reports 96(4):319-326, 1981. Keeler, E.B.; Kane, R.L.; and Soloman, D.H. Short and long- term residents of nursing homes. Medical Care 12:363-370, 1981. Kramer, M. Application of life table methodology to the study of mental hospital populations. Psychiatric Re- search Reports 5:49-76, 1956. Kramer, M. Psychiatric Services and the Changing Institu- tional Scene, 1950-1985. DHEW Pub. No. (ADM) 77-433. Washington, D.C.: U.S. Govt. Print. Off., 1977. 24 Kramer, M.; Goldstein, H.; Israel, R.H.; and Johnson, N.A. A Historical Study of the Disposition of First Admissions in the Warren State Hospital 1950-1960. Public Health Monograph No. 32, Washington, D.C., PHS Pub. No. 445, U.S. Govt. Print. Off. Liu, K., and Manton, K.G. The characteristics and utiliza- tion pattern of an admission cohort of nursing home patients. Gerontologist 23(1):92-98, 1983. Liu, K., and Palesch, Y. The nursing home population: Dif- ferent perspectives and implications for policy. Health Care Financing Review 3:15-23, 1981. National Center for Health Statistics. Long Term Care: Minimum Data Set, DHHS Pub. No. (PHS) 80-1158. Hyattsville, Md.: Report of National Committee on Vital and Health Statistics. National Center for Health Statistics. International Classi- fication of Disease--8th Edition, DHHS Pub. No. (PHS) 1693. Washington, D.C.: U.S. Govt. Print. Off., 1967. National Center for Health Statistics. Characteristics, So- cial Contacts and Activities of Nursing Home Residents. Vital and Health Statistics, Series 13, No. 27. DHEW Pub. No. (HRA) 77-1778. Washington, D.C.: U.S. Govt. Print. Off., May 1977. National Center for Health Statistics. The National Nursing Home Survey. 1977 Summary. Vital and Health Statis- tics, Series 13, No. 43. DHEW Pub. No. (PHS) 79-1794. Washington, D.C.: U.S. Govt. Print. Off., 1979. National Center for Health Statistics. Characteristics of Nursing Home Residents, Health Status and Care Re- ceived. Vital and Health Statistics, Series 13, No. 51. DHHS Pub. No. 81-1712. Washington, D.C.: U.S. Govt. Print. Off., 1981. National Center for Health Statistics. An Overview of the 1980 National Master Facility Inventory Survey of Nursing and Related Care Homes by Sirrosco, A. Advance Data, No. 91. DHHS Pub. No. (PHS) 83-1250. Hyattsville, Md.: Public Health Service, 1983. National Institute of Mental Health. Model Reporting Area for Mental Health Statistics: Development, Purpose and Program. PHS Pub. No. 699, Washington, D.C U.S, Govt. Print. Off., 1962. National Institute of Mental Health. Mental Health, United States, 1983. Taube, C.A., and Barrett, S.A., eds. DHHS Pub. No. (ADM) 83-1275. Rockville, Md.: the Institute, 1983. 23 National Institute of Mental Health. Trends in Patient Care Episodes in Mental Health Facilities, 1955-1977, by Witkin, M.J. Mental Health Statistical Note No. 154. DHHS Pub. No. (ADM) 80-158. Rockville, Md.: 1980. Regier, D., et al. The De Facto Mental Health System. Archives of General Psychiatry, Vol. 35, 1978, pp. 685-693. Regier, D.A. "The NIMH Epidemiologic Program: Histori- cal Context, Major Objectives and Study Design." Sub- mitted to Archives of General Psychiatry (forthcoming). Regier, D.A., and Taube, C.A. The delivery of mental health services. In: Arieti, S., and Brodie, H.K.H., eds. American Handbook of Psychiatry. Vol. 7, 1981, pp. 715-733. U.S. Bureau of the Census. Projections of the Population of the United States: 1975-2050. Current Population Reports. Series P-25, No. 601. Washington, D.C.: U.S. Govt. Print. Off., 1975. 26 CHAPTER 3 NURSING HOME STUDY OF THE EASTERN BALTIMORE EPIDEMIOLOGICAL CATCHMENT AREA STUDY Pearl S. German, Sc.D. Associate Professor, School of Hygiene and Public Health Johns Hopkins University Sam Shapiro School of Hygiene and Public Health Johns Hopkins University Morton Kramer, Sc.D. Professor, School of Hygiene and Public Health Johns Hopkins University Baltimore, MD Dr. Kramer has provided a discussion of the unprece- dented increase over the past two decades in the number of residents in nursing homes, the most restrictive form of long-term care (Kramer 1983; NCHS 1979). In this chapter we discuss and analyze an important problem accompanying that increase--namely, mental morbidity among nursing home residents. We studied nursing home residents in the Baltimore area based on data from the Epidemiological Catchment Area (ECA) Study, a large, multisite study funded by the National Institute of Mental Health (NIMH). The NIMH study investigated the health and mental health of populations in five locations around the country and analyzed the institutions that served each community, in- cluding nursing homes. The data for this analysis of nursing home residents, one of three types of institutions included in the NIMH study, is unusual in that they represent all the nursing homes in the area, with very few exceptions, which serve the population being studied. Due to the nature and timing of the survey, we can be reasonably confident of the picture which emerges on the status of nursing home patients. In the course of our analy- sis, we draw comparisons based on cross-sectional informa- tion between short-stay and long-stay patients. Stronger findings will emerge when analysis is completed on a second wave of interviews with the same patients 1 year following the data reported here. The importance of understanding the demographics of nursing home residents, and the dearth of representative samples across nursing homes, warrants 27 this preliminary examination of elderly persons residing in nursing homes. Current Issues in Nursing Home Care The documented rise in the use of nursing homes for long-term care has resulted in numerous efforts to under- stand the structure and process of care in this setting and the characteristics of residents, costs, and financing (Morris 1981; Callahan and Wallack 1981). It is difficult to obtain systematic data on nursing homes, however, because of the many different types of nursing institutions. No central authority exists for nursing homes as it does for State men- tal institutions or correctional institutions (NCHS 1983), although regulations concerning third-party payments have, to some extent, standardized the categorization of nursing homes. The increased demand for nursing home care dic- tates the importance of securing accurate data from which to draw conclusions about various nursing care settings and how they affect patients. This need is reflected in plans for conducting another National Nursing Home Survey, now in the planning stage (NIMH 1983). Nursing homes receive substantial public expenditures for care of older people. Social Security retirement pay- ments represent the single largest public expenditure for the elderly; acute hospital care ranks second; and nursing home payments rank third (GAO 1982). The emergence of private nursing homes as a major resource for the elderly began with the Social Security Act provisions (1965), which barred pay- ment of Federal funds to individuals housed in public insti- tutions. This ruling was aimed specifically at the notorious poor farms and county homes in existence at that time. As a result, privately owned and operated facilities evolved to meet the needs of older individuals requiring continuous care (Scott 1981). The availability of Medicaid reimburse- ment for extended care also influenced the development of proprietary homes insofar as administrative regulations ac- companying Medicaid were more readily handled by large organizations. Intense and wide-ranging discussions have encompassed all aspects of nursing home care (U.S. Senate 1981; Firman 1983). Debate continues over what type of facility is better or cheaper or more or less humane (Vladeck 1980; GAO 1978; Chenitz 1983; Sabia et al. 1982; Ernst and West 1982). In all such discussions, the question of the mental health of the residents is pivotal. Mental morbidity has been variously 28 cited as the reason for admission, the result of admission, or a correlate to deterioration during extended residence at nursing homes. Despite the conviction that mental health is a key issue in nursing home care, relatively little hard data are available. Recurring questions concerning mental health and nurs- ing homes include the following: 1. How prevalent are different types of mental morbidity? 2. Can mental morbidity present at admission or in- cluded in reasons for admission be differentiated from that which develops following admission? 3. What are the discernible co-morbidities--that is, what physical conditions appear to be associated with and to play a role in mental morbidity? 4. What patient characteristics are associated with different patterns of mental morbidity? 3. What environmental factors, including the setting of care and the continued access to the outside world, are associated with different levels of mental morbidity? 6. What strategies for intervention at admission and during residence will decrease mental morbidity or make a patient's adjustment to a nursing facil- ity easier in the face of such morbidity? 7. Is a nursing home the appropriate setting for care of the elderly with mental morbidity, and what criteria should be used in answering this question? The answers to these questions have only begun to be formulated. The addition of a mental health component to the upcoming National Nursing Home Survey reflects a recognition of the importance of answering these questions; moreover, for the first time, nursing home patients them- selves will be interviewed as part of the survey. Relevant Results of the Eastern Baltimore ECA Study The following data relating to the issue of mental health in nursing homes are drawn from the NIMH-funded ECA study of nursing homes serving the population of about one-third of Baltimore City, MD. These data illustrate the advantages and drawbacks involved in gathering information directly from residents of nursing homes and from their families or close friends. The multisite Epidemiological Catchment Area (ECA) study referred to previously had the following objectives: 29 (1) to estimate the incidence and prevalence of specific psychiatric disorders; (2) to study characteristics associated with the presence or absence of these disorders; and (3) to obtain a clear picture of the health care services sought and received by those with and without disorders. The institu- tional surveys, which were a part of the overall ECA study and were carried out in all the epidemiological catchment area (ECA) sites, attempted to study the total institution- alized population and assumed that many individuals with mental morbidity would be located in nursing homes and correctional institutions, as well as in mental hospitals. The conceptual background and methods employed in the Baltimore Institutional Survey and in the other ECA sites around the country will be discussed in an extensive methodologic monograph to be published early next year. A pivotal part of the study was the use of the Diagnostic Inter- view Schedule (DIS), a structured instrument which gener- ates 13 Diagnostic and Statistical Manual (DSM) III diag- noses and a diagnosis of cognitive impairment. The DIS diagnoses can be either current (i.e., having occurred within the past 3 months) or past (i.e., having occurred at some earlier time). The Mini-Mental Status Examination was used to make a current diagnosis of cognitive impairment (as measured on a scale of 0-17), which is viewed in the study as the closest approximation to a diagnosis of organic brain syndrome. The DIS, the instrument used in the institutional surveys to gather diagnostic data, was administered by trained but nonprofessional personnel. A brief description of the procedures used in the insti- tutional survey follows. Nursing homes were identified in metropolitan Baltimore, both within and outside the bound- aries of the community being studied (the catchment area). Within the boundaries of the catchment area, two categories of nursing home patients were tagged: (1) those who had been admitted to the nursing home from a catchment area address within the past year, and (2) those who had resided at the nursing home for | year or longer regardless of the admission address. For nursing homes outside the catch- ment area, only those patients who had been admitted to the nursing home from a catchment area residence within the past year were included in the study. Table | gives a break- down of the Baltimore-area survey of nursing homes by size (number of beds) and location (inside or outside the catch- ment area). The catchment area itself had no large nursing homes (i.e., homes with more than 200 beds). One small nursing home within the catchment area (with an estimated 30 Table 1. Size and location of nursing homes Size of nursing home Inside Outside (number of beds) ECA ECA 1-50 1 4 51-100 2 2 101-150 1 6 151-200 2 3 201-450 0 6 Total number of nursing homes 6 21 eligible sample of 10 patients) refused to participate. All 21 institutions outside the catchment area participated. Table 2 shows the numbers of patients interviewed and the response rates by type of interview. The type of inter- view is an important element as most of the nursing home data are analyzed using this information. Table 2. Response rate of nursing home residents Inside Outside Type of interview Number Percent ECA ECA Full interview 148 38.6 90 58 Short with proxy 78 20.4 45 33 Proxy only 124 32.4 97 27 Refusals 33 8.6 30 3 Total eligible cases 383 100.0 262 121 Response rate 9l.u%* 88.5% 97.5% *Excluding the one facility that refused to participate, the response rate inside the ECA would be 92.1 percent and the overall rate would be 93.8 percent. About 35 percent of the interviews (disregarding the re- fusals) were proxy interviews only, i.e., all information came from someone other than the patient. The informants were usually family members with close ongoing contacts with the patient. About 42 percent were full interviews 31 with patients; in these cases, all the data came from the patient and the interviews included both the DIS and the Mini-Mental Status Examination. About 23 percent were a combination of both patient and proxy interviews (referred to as "short with proxy"). Short patient interviews were almost always limited to the Mini-Mental screening for cognitive impairment. Informants were then interviewed for the DIS and other sections of the survey. The type of interview upon which the data are based has implications when considering the survey results, par- ticularly those analyzing the mental health status of pa- tients. The DIS, the instrument used to indicate specific diagnoses, was administered to either patients or inform- ants, but data gathered about patients are not directly comparable to that gathered from patients. The Mini- Mental was not administered to informants since it relies on direct answers of subjects reflecting current awareness of themselves and the environment. The proportion of full patient interviews was higher in nursing homes outside the ECA--about #48 percent--compared to about 35 percent within the ECA. This reflects the higher proportion of patients within the catchment area who had been institu- tionalized for longer periods of time and thus were more likely to be sicker, either physically or mentally. Proxy interviews were not used when a patient refused to be interviewed, but in situations in which the patient was either physically or mentally unable to respond to questioning. For these patients, information on cognitive impair- ment was abstracted from records using admission diagnoses in lieu of the Mini-Mental Examination. It was assumed that diagnoses at the time of admission would be somewhat uni- form and less distorted by the wide differences in informa- tion available from different nursing homes. Before moving on to observations of mental morbidity and interpretation of the data which suggest development of mental morbidity during institutionalization, we will look at the sociodemographic and other variables used to describe the patients surveyed. The variables for which information was collected were chosen for their potential association with adjustment to the nursing home and possible deteriora- tion of mental or physical conditions. Table 3 shows the age, sex, and race of those individuals included in the Baltimore ECA survey who had been in nurs- ing homes for less than | year, while table 4 shows these data for those in residence for | year or more. The charac- terization of nursing homes as primarily elderly persons’ 32 Table 3. Age, race, and sex of nursing home residents: Length of stay less than | year Total Resi- Male dent's and Male Female Age Female Total White Nonwhite Total White Nonwhite 100.0 30.7 (192) (59) 18-44 2.6 6.8 45-64 13.0 18.6 65-74 21.9 30.5 75-84 33.3 30.5 35+ 29.2 13.6 71.2 42) 28.8 (17) 69.3 (133) (114) 85.7 14.3 (19) 0.0 31.6 15.8 21.1 31.6 NOTE: Ratios in weighted data with parentheses. this and all subsequent tables are nonweighted frequencies shown Table 4. Age, race, and sex of nursing home residents: Length of stay | year or more in Total Resi- Male dent's and Male Female Age Female Total White Nonwhite Total White Nonwhite 100.0 27.8 (158) (44) 18-44 4.4 4.5 45-64 7.6 9.1 65-74 12.0 18.2 75-84 3l.6 34.1 85+ 44.3 34.1 77.3 (34) 5.9 5.9 8.8 35.3 44.1 22.7 (10) 0.0 20.0 50.0 30.0 0.0 72.2 (114) 88.6 (ro) ~~ (13) “WN = 00 00 ON. fF wi NO OO 11.4 N = — Won NNN ec ¢ oe oo — NF NN 33 residences is borne out by these local data. Almost 85 per- cent of the short-term nursing home residents (table 3) and 88 percent of the longer-term residents (table 4) were age 65 and over. We also see a preponderance of females: al- most 70 percent of the short-term nursing home residents were female (table 3), as were 72 percent of the longer- term residents (table 4). The racial distribution of nursing home residents is also interesting. In the accompanying survey of households in the Baltimore ECA, 20 percent of the elderly (age 65 and up) were black. This is similar to the racial breakdown of the local nursing home population, which runs counter to past national data. In both nursing home populations, i.e., those more recently institutionalized and those in residence for longer periods, the proportion of black males is about double that of black females in the nursing homes surveyed. White women are much more likely than white men to enter nursing homes, thereby making them an overrepresented group in these institutions. This is not the case, however, for black women, at least in this study. Table 5 examines selected characteristics of the nurs- ing home residents included in the survey. Our first observa- tion is the uniformity among descriptors for patients with different lengths of stay at the nursing homes. With the exception of their anticipated return to the households from which they were admitted, we see little difference in the other variables between short-stay and long-stay patients. Approximately 4 percent of the longer stay patients ex- pected to return to their previous households compared with 14 percent of shorter stay patients. However, according to the patients' confidants, 60 percent of the longer stay pa- tients and 70 percent of the shorter stay patients were ex- pected to return to the community--a much higher number for both groups of patients. Close to a third of the surveyed residents had lived alone before admission to the nursing home, which parallels national data for the ambulatory elderly. About 10 percent of them reported a previous mental health hospitalization--a high proportion compared to the general population. We see a high degree of continuing connection with families. Over three-fourths of the residents had had at least one visit from family members in the preceding 6 months, and the great majority had more frequent visits than this. This finding, together with the high proportion of residents re- porting confidants (60-70 percent), tends to confirm growing evidence that challenges past perceptions characterizing the elderly as abandoned when they become institutionalized. 34 Table 5. Characteristics of nursing home residents by length of stay Length of stay Less than I year Characteristic I year or more (183) (152) Lived alone before admission 34.7 30.3 Expects to return to former residence in community 13.5 3.8 Widowed 55.6 58.6 Had 0-8 years of education 66.7 63.7 Ever had nervous condition 33.1 34.5 Ever had inpatient mental health admission 9.4 9.7 Had visitors in past 6 months From relative 78.9 From friends 45.9 38.0 Has confidants 69.9 In discussing findings on the mental health and mental morbidity of the nursing home population, we categorize patients by length of stay throughout. Although length of stay identifies different populations of patients, we use it here as a method of characterizing the mental health status of those in continued residence compared to those in shorter residence. Examining these different populations at a point in time can suggest possible effects on mental health of continued residence in nursing homes. Table 6 shows current selected DIS diagnoses, including cognitive impairment. Note that more than one condition could be diagnosed for a single patient in this survey. The purpose is to give an overview of existing conditions rather than overall mental status. Cognitive impairment is re- ported only for those patients who were administered the Mini-Mental test. Those with shorter stays have a higher proportion of DIS diagnoses, especially phobias and affective disorders. 35 Table 6. Current DIS diagnosis by length of stay in nursing home Length of stay Less than I year Current diagnosis 1 year or more (174-181)% (104-144)* Schizophrenia 0.6 0.7 Affective disorders 6.8 2.1 Phobias 11.6 2.1 Substance abuse or dependence 0.6 0.0 Antisocial personality 0.7 0.0 Other DIS disorders 3.3 0.7 Any DIS diagnosis 41.1 25.3 Cognitive impairment+ 24.0 21.5 *These numbers represent the range of individuals for any single diagnosis. Certain diagnoses could not be made be- cause of lack of information. Individuals could have more than one diagnosis however. +Cognitive impairment here is based on the Mini-Mental test administered to patients. It does not include chart diagnoses. Table 7 gives more details of the DIS findings in the nursing home population. It shows the number of patients having any DIS diagnosis and those with any diagnosis ex- cluding organic brain syndrome (as identified through cogni- tive impairment). The source of information (i.e., type of interview) is also included. Among longer stay residents, the presence of any current diagnosis is uniformly highest for "short with proxy" interviews. This is accounted for by several factors. First, cognitive impairment is included in this category of current diagnosis, and "short with proxy" interviews usually took place because of the patient's in- ability to understand and deal with the content of the full interview. Such patients were given the short interview, which consisted of the Mini-Mental test only. Thus the diagnosis of cognitive impairment is higher for longer stay patients because the "short with proxy" interview was more likely to occur with this population. 36 Table 7. Mental status of patients by type of interview and length of stay in nursing home Short with proxy Full interview interview Proxy only Length of stay Length of stay Length of stay Less than lor Less than | or Less than | or Current DIS | year more | year more | year more diagnosis years years years (83) (63) 51) (29) (58) (66) Any current DIS diagnosis 45.8 36.5 60.8 51.7 *17.2 *3.0 Any current DIS diagnosis excluding cognitive impairment 18.1 6.3 15.7 0.0 17.2 3.0 Cognitive impairment only 27.7 30.2 45.0 5.7 Fm Hn *Mini-Mental examination not administered. Because of the different types of information and the lack of information in a moderate proportion of cases, we attempted to find other methods of examining individuals for whom information concerning cognitive impairment was missing. Table 8 presents data for only those patients de- fined as suffering from cognitive impairment as an indicator of organic brain syndrome, including information drawn from patients' charts in the nursing homes. We discussed the diagnoses appearing from chart reviews with the clini- cians on the ECA study in an attempt to identify those diag- noses most likely to reflect cognitive impairment among patients for whom information was not available through the survey. We examined the data in table & in order to throw some light on the history of organic brain syndrome. Among the patients with cognitive impairment, about #44 percent of those with shorter stays had been admitted with such a diagnosis, compared to 60 percent of those with longer stays. About 10 to 15 percent of the patients diagnosed at 37 Table 8. Source of diagnosis of cognitive impairment for patients by length of stay in nursing home Less than I year Source of diagnosis l year or more Any diagnosis of cognitive impairment 100.0 100.0 From chart* and/or Mini-Mental (68) (63) No admission diagnosis, Mini-Mental positive 56.2 39.7 Admission diagnosis, no Mini-Mental administered 20.5 34.9 Admission diagnosis, Mini-Mental normal 13.1 11.1 Admission diagnosis, Mini-Mental positive 10.2 14.3 *Admission diagnosis only admission to have cognitive impairment were diagnosed as normal by the Mini-Mental administered as part of the study. In the case of the shorter stay group, the Mini- Mental was given at some point during the year following admission; for the longer stay group, it was administered at least | year after admission. For the remaining 34 to 50 percent of shorter stay and longer stay patients respec- tively, either the Mini-Mental test failed to identify cognitive impairment or the individual was unable to be examined, often the result of extreme mental confusion. Discussion We must view the ECA study data with care since the quality of the information is mixed and comes from differ- ent sources. However, these data do suggest that about 56 percent of the shorter stay patients and 40 percent of the longer stay patients developed some form of cognitive 38 impairment following admission. This is based on patients who had no admission diagnosis suggesting cognitive impair- ment, but tested positive on the Mini-Mental. Of course, attrition in the short-stay groups makes the long-stay group a selected population. However, the importance of these data make such speculation reasonable and may indicate a fruitful topic for future investigation. We will reexamine this speculation and other suggestive observations using followup data which should give us added insight into this problem. The thrust of our analysis has been to demonstrate what can be learned from nursing home patients that throw light on their long-term care in terms of the extent and nature of patients' mental morbidity and characteristics that may be associated with different lengths of stay of patients. Future analysis based on additional data will augment this analysis and further sharpen our insights. This, in turn, may lead to efforts to ameliorate the mental health status of nursing home residents. For example, should nursing homes attempt to differentiate among different types of diagnosis at admis- sion which indicate cognitive impairment and associated dementias? How should families be involved if, as our data indicate, many continue to have contact with patients? Use of nursing homes is predicted to increase, and health professionals have a serious responsibility both to make these facilities as healthful as possible for the indi- viduals requiring their services and to help the staff and administration of nursing homes offer efficient and high quality care. References Callahan, J.J., and Wallack, S.S. Reforming the Long Term Care System. Lexington, Mass.: Lexington Books, 1981. Chenitz, W.C. Entry into a nursing home as status passage: A theory to guide nursing practice. Geriatric Nursing (4)2:238-240, 1983. Ernst, N.S., and West, H.L. Nursing Home Staff Develop- ment. New York: Springer Publishing, 1982. Firman, J. Reforming community care for the elderly and disabled. Health Affairs 2(1):84-89, 1983. General Accounting Office. Home Health Care: The Need for a National Policy. Comptroller General's Report to Congress. HRD-78-19. Washington, D.C.: U.S. Govt. Print. Off., 1978. 39 General Accounting Office. Report to the Chairman of the Committee on Labor and Human Resources of the U.S. Senate. Washington, D.C.: U.S. Govt. Print. Off., Dec. 1982. Kramer, M. Trends in institutionalization and prevalence of mental disorders in nursing homes. Proceedings of Na- tional Conference on Mental Illness in Nursing Homes. Rockville, Md.: National Institute of Mental Health, Oct. 5-7, 1983. Morris, R. Allocating Health Resources for the Aged and Disabled. Lexington, Mass.: Lexington Books, 1981. National Center for Health Statistics. The National Nursin Home Survey: 1977 Summary. DHEW Pub. No. PHY 79-1794. Washington, D.C.: U.S. Govt. Print. Off., July 1979. National Center for Health Statistics. An Overview of the 1980 National Master Facility Inventory Survey of Nursing and Related Care Homes, by Sirrocco, A. Advance Data for Vital and Health Statistics. No. 91. DHHS Pub. No. (PHS) 83-1250. Washington, D.C.: U.S. Govt. Print. Off., Aug. 11, 1983. National Institute of Mental Health. Supporting Statement for Standard Form 83, 1984 National Nursing Home Sur- vey, Rockville, Md., 1983. Sabin, T.D.; Vitug, A; and Mark, V. Are nursing home diagnosis and treatment inadequate? Journal of the American Medical Association 242(3):1234-1237, 1982. Scott, R. Reform movements and organization. In: March, J., ed. Aging: Social Change. New York: Academic Press, 1981, pp. 54-64. U.S. Senate. Report of the Special Committee on Aging. Developments in Aging. Washington, D.C.: U.S. Govt. Print. Off., 1981. Vladeck, B. Unloving Care: The Nursing Home Tragedy. New York: Basic Books, 1980. 40 CHAPTER 4 MAJOR MENTAL DISORDERS/PROBLEMS IN NURSING HOMES: IMPLICATIONS FOR RESEARCH AND PUBLIC POLICY Benjamin Liptzin, M.D. Director of Geriatric Psychiatry McLean Hospital Belmont, MA and Assistant Professor of Psychiatry Harvard Medical School Cambridge, MA Why is the subject of mental illness in nursing homes of interest? First, in the last 30 years, nursing homes have become a major resource for residential care of the men- tally ill, especially the elderly mentally ill (Sherwood and Mor 1980). Historically, this is a result of several factors. Until the 1800s, communities provided homes or detention facilities for their poor. These homes gradually became a place to house the insane. In the 1800s, States began to assume responsibility for the mentally ill and built State asylums or mental hospitals. Many communities still retained public old age homes. Proprietary nursing homes received three big boosts from the Federal government (Stotsky 1970). The Social Security Act of 1935 provided funds to otherwise indigent people enabling them to pay for private accommodations in what were mostly boarding homes. By 1939 1,200 such homes with 25,000 residents had been established. As their residents became increasingly disabled, many of these homes added nursing services. In the early 1950s, the Fed- eral government made loan funds available to construct and renovate proprietary nursing homes. By 1961 there were 9,582 private nursing homes with 330,981 beds. In 1965, the passage of Medicare and, even more importantly, Medicaid stimulated another boom in the nursing home industry so that by 1980 there were 23,065 nursing homes with 1,537,338 beds and 1,396,132 residents (NCHS 1983). The growth of nursing homes was accom- panied by a marked decrease in the resident population of State and county mental hospitals from 558,922 in 1955 to 193,436 in 1975 (American Psychiatric Assn. 1978). We have no precise figures on how many of the discharged mental 41 nospital residents were sent to nursing homes, but it is likely that many were "transinstitutionalized" rather than "deinsti- tutionalized." According to a 1971 study by the National Institute of Mental Health (NIMH), 40 percent of patients 65 and older discharged from State and county mental hospitals in 1969 were referred to nursing homes. Of the 1,075,800 residents in nursing homes in 1973-74, 84,600 or 8 percent were admitted from a mental hospital or other long-term specialty hospital (NCHS 1977). Furthermore, State mental hospital admission policies became more restrictive, espe- cially for the elderly, so that many persons with mental illness who might formerly have been admitted were sent directly to nursing homes instead. Of the 1,117,500 dis- charges from nursing homes in the United States in 1976, 125,700 or 11 percent had a primary diagnosis at admission of mental disorders or senility without psychosis. Irrespec- tive of admission diagnosis, 64,600 of the discharges had mental illness as a chronic condition, 206,300 had chronic brain syndrome, and 226,600 had senility (NCHS 1981). A second reason for the interest in mental illness in nursing homes is that these facilities have frequently been criticized for a variety of deficiencies including their lack of psychiatric care (U.S. Senate 1976). The major deficien- cies cited by the Subcommittee on Long-Term Care of the Special Committee on Aging of the U.S. Senate include lack of human dignity, lack of activities, untrained and inade- quate staffing levels, ineffective inspections and enforce- ment, profiteering, lack of control on drugs, unsanitary con- ditions, poor food, and poor fire protection. Other defi- ciencies cited are unnecessary or unauthorized use of re- straints, negligence leading to death or injury, theft, lack of psychiatric care, untrained administrators, discrimination against minority groups, reprisals against those who com- plain, lack of dental care, advance notice of State inspec- tions, and false advertising. The subcommittee described nursing home care generally as a "failure in public policy" (U.S. Senate 1974). Thus, it behooves us to see whether this indictment is still valid and, if so, whether psychiatric services in nursing homes can be improved or whether pro- grams in alternate facilities need to be developed. A third reason for being interested is that despite all the criticisms and rhetoric, very little is known about men- tal illness in nursing homes. I will summarize some of the studies that have been done, but clearly a great deal more needs to be learned. Despite this lack of knowledge, the Task Panel on the Elderly of the President's Commission on Mental Health in its report of February 15, 1978, hardly 42 mentions nursing homes as an area for further investigation (Federal Council on Aging 1980). Similarly, the Report of the Secretary's Committee on Mental Health and Illness of the Elderly (Federal Council on the Aging 1980) says little about the lack of knowledge in this area, although it recom- mends that mental health services in long-term care facili- ties be improved. A recent development that will surely improve our knowledge base is the affiliation of academic institutions with nursing homes for the purpose of develop- ing teaching and research programs based in "teaching nurs- ing homes." The National Institute on Aging has funded several such programs, which primarily focus on dementia and not on other mental disorders. As more academic de- partments of psychiatry develop programs in geriatric psy- chiatry, more research efforts will likely focus on mental illness in nursing homes. Areas of Research Interest Nursing Home Characteristics and Epidemiology Understanding the basic characteristics of nursing homes is a prerequisite for the study of mental illness there. The basic source of data is the National Master Facility Inventory Survey of nursing and related care homes conducted by the National Center for Health Statistics (NCHS 1983). The NCHS definition of nursing homes or nursing and related care homes states that a home must maintain three or more inpatient beds and must provide one or more personal care services (such as help with eating, walking, correspondence, shopping, dressing, bathing, or massage). In the 1980 survey (NCHS 1983), data collection was expanded to include more than 2,500 adult foster care homes in Michigan and 1,000 residential community care facilities in California. Such facilities provide similar types of care as do those certified as skilled nursing facilities (SNFs) or intermediate care facilities (ICFs). All these facilities are eligible for Medicaid or Medicare reimburse- ment and are usually thought of as nursing homes. NCHS has not published data on the prevalence of diag- nosed mental disorder by facility size or certification. Such data are of interest for several reasons. Medicaid regula- tions specify that not more than 50 percent of the residents of an intermediate care facility may have mental disorders or, by definition, the facility becomes "an institution for mental diseases." Anecodotal experience suggests that 43 many ICFs do in fact have a majority of mentally ill pa- tients, but the Medicaid restriction as well as low reim- bursement has inhibited the development of specialized psychiatric programs in such facilities. In order to study mental illness in nursing homes, it would also be useful to know which types of homes to focus on. Specifically, half of all nursing homes have less than 50 beds and almost one- quarter have less than 10 beds. However, these homes ac- count for only 12 percent and 2 percent respectively of all beds. In contrast, one-quarter of the nursing homes have 100 beds or more, and this group accounts for over 60 per- cent of all beds. At this point, we do not know whether mentally ill persons are more likely to be in the large (presumably more institutional) facilities or the small (presumably more homelike) facilities. The National Nursing Home Surveys conducted to date have used poorly defined and overly general categories for primary diagnoses at admission. These include senile psy- chosis, other psychosis, chronic brain syndrome, senility without psychosis, mental retardation, and alcoholism or other mental disorders. The list of chronic conditions and impairments includes drug addiction and insomnia in addi- tion to the preceding categories of primary diagnosis. The use of these terms in such a survey reflects in part the im- precise diagnoses or assessments received by persons ad- mitted to nursing homes (Sabin et al. 1982). It also reflects the poor recordkeeping in these homes; many ICFs have patient records showing little or no past history. Even patients admitted directly from a hospital may not have a discharge summary included in their nursing home record. Even if NIMH updates diagnostic categories used in the next National Nursing Home Survey form to reflect current diag- nostic terminology and knowledge, the problems of record- keeping and inadequate assessment by nursing home per- sonnel will limit the precision possible. The basic data in these surveys are nevertheless invaluable in understanding the characteristics of nursing home residents. This is best illustrated by the 1973-74 Na- tional Nursing Home Survey, which also compared nursing home residents with the entire U.S. population aged 65 years and over (NCHS 1977). It showed that women were over- represented among nursing home residents (72 percent compared to 59 percent among the total aged population). Nursing home residents were also older than the noninstitu- tionalized elderly (83 percent of residents were 75 or older compared to 37 percent of the nonresident aged). The sur- vey also revealed a striking difference in marital status. uy While 54 percent of the noninstitutionalized elderly popu- lation were married, only 12 percent of the elderly nursing home residents were married. About 37 percent of the noninstitutionalized elderly population were widowed in contrast to 69 percent of the nursing home population. Approximately 6 percent of the noninstitutionalized group had never been married compared to 15 percent of the nursing home residents. These data are consistent with the idea that lack of an able and willing caregiver is a major reason for admission to and continued stay in a nursing home. More research is needed on these and other factors that lead to nursing home admission since Gurland et al. (1983) have shown that twice as many severely disabled elderly reside in the community as in long-term care facil- ities. Policymakers who hope to reduce the number of people admitted to long-term care facilities, thereby re- ducing the costs of institutionalization, must taken this fact into consideration. These large-scale national surveys need to be supple- mented by indepth epidemiological investigations using standardized psychiatric interviews administered by trained interviewers. Such studies have been included as part of the NIMH-funded Epidemiological Catchment Area surveys in New Haven, CT, and Baltimore, MD. The results of these studies will provide a community-wide perspective as to the prevalence of various mental disorders in institutional set- tings. Gurland and associates (1983) have published a crossnational comparison of the institutionalized elderly in New York and London. This study showed comparable severity of disabilities among the elderly in long-term care facilities in the two cities. However, there were notably fewer markedly dependent elderly in the community sam- pled in London than in New York. We need more such cross-national studies if we are to distinguish disability and illness-related factors in institutionalization from organiza- tional, financing, and social system factors. In looking at mental illness in nursing homes, several distinct groups of patients need to be examined separately. The first is a group with chronic problems. An American Psychiatric Association report fitted "The Chronic Mental Patient" (1978) describes three distinct but overlapping chronic populations: the chronic mentally ill, the chronic mentally disabled, and chronic mental patients. The chronic mentally ill have a variety of psychiatric diagnoses including schizophrenia, manic-depressive illness, alcoholism, organic brain syndromes, mental retardation, and certain drug addictions and personality disorders. The chronic mentally 45 disabled are a subgroup of the chronic mentally ill charac- terized by partial or total impairment of instrumental (usu- ally vocational or homemaking) role performance. The ex- tent of disability is also related to the degree of social inadequacy, the extent of symptomatic impairment, and the need for external structure, support, or treatment. Another subgroup of the chronic mentally ill are chronic mental pa- tients, usually defined in terms of repeated or prolonged hospitalizations. Considerable attention has been focused on this latter group in recent years because of concern about the policy of deinstitutionalization. We summarize several relevant studies in the next section. Another group of patients requiring further study are those who have experienced a relatively recent onset of psychiatric disturbance, but have developed significant disability and are admitted to a nursing home because they lack adequate supports to return home. This group merits further study because their primary psychiatric problem may be reversible. Examples of such situations are patients suffering acute confusion following a serious physical illness or surgery and patients with inadequately treated depres- sions. In these examples, a marked recovery to baseline levels of functioning could be compatible with a return to the previous living situation with some additional supports. Policymakers hope that careful screening for such cases and the return of such patients to less intensive levels of care could reduce nursing home expenditures. Such patients are at risk for recurrence, however, and may relapse quickly if removed from a supportive structured environment. Pa- tients who need some level of long-term care are not likely to do well if bounced around every time their level of need changes. Unfortunately, most States are currently carrying out such level-of-care screening under pressure from the Federal government to reduce Medicaid expenditures. Careful followup of this group of reclassified and transfer- red patients is needed for a better informed public policy. Another group of patients to consider are those who are admitted to nursing homes because of medical problems or physical disability but who develop psychiatric disturbances while in the nursing home. For many in this group, the psy- chiatric disturbance is a dementing illness which cannot be reversed but which needs to be recognized so that the staff can provide optimum management. Other patients in this group may develop depression and, if treated, may improve their functioning as well as their mood although they are likely to still require the nursing care that led to their orig- inal placement. Careful studies in a sample of nursing 46 homes should attempt to determine how many depressed patients there are and assess their response to treatment. In community studies such as Gurland et al. (1983), aged depressed patients have been found to receive little in the way of specific antidepressant treatment although they see their doctors repeatedly and are given other psychotropic medications, usually benzodiazepines. This finding is con- sistent with that of Keller et al. (1982), who studied the treatment of depressed patients of all ages. What is true for depressed patients in the community is even more likely for depressed nursing home residents. In studying this prob- lem, it would be interesting to determine whether underly- ing depression is a contributing factor in admission to a nursing home or whether certain residents exposed to cer- tain aspects of nursing home life develop clinical depressions. A study by Teeter et al. (1976) touches on some of these last issues. They studied 74 patients at two nursing homes in a Midwestern city. They interviewed patients, relatives, and staff and reviewed patients' medical records. The mean age of the patients was 81.2 and they averaged almost five medical diagnoses each. Nearly a third of the patients had histories of significant mental or emotional disorders, including schizophrenia, depression, or alcohol- ism. The investigators gave 63 patients, or 85 percent of the total sample, a primary psychiatric diagnosis. Of these, 34 had chronic brain syndrome, 19 had depression (including 3 with psychotic depression), 5 had schizophrenia, 2 had paranoid psychosis, | had anxiety neurosis, and 2 had per- sonality disorder. Thirty-nine patients of the total sample were given a secondary diagnosis, with depression being most common. Overall, 37 patients had a primary or sec- ondary diagnosis of depression. We don't know whether this finding would be replicated using the Diagnostic Statistical Manual (DSM-III) diagnostic criteria, but the Federal Coun- cil on the Aging studies referred to earlier will provide some data. Teeter's researchers also noted that in 45 patients, one or more psychiatric diagnoses were missed although they found only five cases in which incorrect diagnoses were assigned (chronic brain syndrome). Another interesting find- ing was that only 13 patients received psychotropic medica- tion on a daily basis while 30 patients received these medi- cations "as needed." The investigators made no judgment as to the adequacy or appropriateness of the specific psycho- tropic drug treatment. More studies like this are needed to identify cases of mental disorders among nursing home residents and to evaluate the adequacy of their treatment. 47 An earlier pioneering study by Goldfarb (1952) differed from the Teeter study in that the earlier study focused on the high prevalence of chronic brain syndrome. Eighty- seven percent of the patients in the nursing homes Goldfarb surveyed in New York were so diagnosed. Studies of mental disorder in nursing home residents may provide useful infor- mation about the development or course of these disorders generally. Chronic Mental Patients in Nursing Homes A number of useful studies have looked at what happens when chronic mental patients are discharged to nursing homes. We will review a few of the most significant of these studies. Stotsky and his research associates conducted a series of controlled and clinical studies from 1964 to 1966 to an- swer a number of questions about chronic mental patients and nursing homes (1970). They found that nursing homes had become a significant resource for elderly mental pa- tients. Over a 4-year period, 699 patients from Boston State Hospital, a mental institution, were placed in nursing homes. Of these, 383 had been hospitalized continuously for | year or more and 150 of these for 10 years or more. Their study also indicated that 90 percent of nursing home admin- istrators said they would accept incontinent, depressed, withdrawn, confused, disoriented, hypochondriacal patients, even those unable to feed or dress themselves. On the other hand, a majority of administrators said they would not ac- cept patients who were suicidal, hostile, aggressive, assaul- tive, destructive, or boisterous, as well as those who wan- dered excessively, smoked in bed, or had severe alcohol or drug problems. Nursing home staff tended to fear patients who were assaultive, threatening, destructive, noisy, nega- tivistic, or wandering, and such patients were returned to the mental hospital when their behavior outbursts became unmanageable. Stotsky et al. concluded that such patients should not be placed in nursing homes unless these behaviors had subsided for more than 6 months. The key factor, according to this study, in a successful nursing home placement was the absence of severe psychi- atric disturbance. Mode of treatment, nursing home charac- teristics, casework activity, patients’ relationships with their families, attitudes of the staff toward the mentally ill, and other social variables were much less important. This finding is of considerable importance for administrators planning aftercare and followup services, as well as for those who criticize the lack of followup. It may be that 48 very disturbed patients do poorly and less disturbed patients do well irrespective of followup. Mental patients placed in nursing homes did no worse than a matched group that re- mained in the mental hospital over a 6-month followup period. In comparison with matched patients from the same mental hospital wards, the patients placed in nursing homes exhibited significantly less excitement, hostility, perceptual distortion, tension, motor retardation, thought disorder, im- pairment in social relationships, impairment in basic self- care activities, disorientation, and nocturnal disturbance. The study further found no reliable pattern of nursing home characteristics that related to successful placement of mental patients. No clear relationship between attitudes of nursing home staff toward the mentally ill and successful placement could be established. The researchers found sig- nificant overlap in behaviors of the mental patients with a matched group of patients placed in nursing homes from general hospitals or the community. The latter group had more physical symptoms and somatic complaints associated with depression. Compared to patients placed from general hospitals, successfully placed mental patients were better prepared, more frequently liked the nursing home and their roommates, had special friends, and were more active dur- ing the day. Nurses regarded mental patients as more dis- turbed than other patients and characterized their behavior significantly more often as confused, disoriented, destruc- tive, assaultive, and withdrawn. The nurses' attitudes were somewhat at variance with the mental patients' actual be- havior and reflected some negative bias toward the mentally ill and overgeneralization from the behavior of poorly ad- justed mental patients. These unfavorable attitudes may at times have led to unfavorable dispositions. A study like this should be replicated since many more mental patients and perhaps more difficult ones have been placed in nursing homes in the 20 years since this study was carried out. Furthermore, readmission to state hospitals is sometimes more difficult to accomplish today than it was then. Another major study of the mentally ill elderly in nurs- ing homes was done by Glasscote and Beigel (1976). The authors surveyed all State hospitals and a large sample of federally supported community mental health centers concerning their policies and services for the elderly men- tally ill. In addition, they visited 60 nursing homes and 3l board-and-care homes and carried out interviews with ad- ministrators, nursing directors, and other patient care per- sonnel. All these homes had received patients from one of the psychiatric facilities in different parts of the United 49 States. While the survey had some limitations, the authors concluded that the majority of facilities provided a good physical setting, an evidently caring staff, good and ade- quate food, and a reasonable range of activities. Despite this overall positive assessment, the authors identified several problems: ® Aides, who represent the most sizable group of patient care personnel, are largely if not totally ignorant of the particulars of caring for sick old people and receive little or no training. ® Medical care is provided almost exclusively by general practitioners, few of whom have any for- mal preparation for working with the elderly. They rarely request consultation from internists or psychiatrists. ° Geriatric patients in State mental hospitals are notoriously neglected, with a very high ratio of patients per doctor, with the least able psychi- atrists assigned to them, and with the unit head often a nonpsychiatric physician. Glasscote and Beigel also found large numbers of nurs- ing home patients displaying symptoms of full-blown clinical depression. To address this problem, they recommended more frequent and more adequate psychiatric consultations. The extent of treatable or at least diagnosable major de- pression in nursing home residents should be studied. The Epidemiological Catchment Area studies will provide some information on this, but better instruments may need to be developed for identifying depression in the elderly, espe- cially among the cognitively impaired. The effectiveness of psychiatric consultations in nursing home settings should also be studied. A potential methodological problem is that nursing homes that are not already requesting such consulta- tions are unlikely to be responsive to the recommendations of such a study. In contrast to the generally positive findings in the previous two studies, Schmidt et al. raised serious questions about the reliance on nursing homes for the care of psychi- atric patients (1977). The authors studied records on 1,155 Medicaid patients in nursing homes in Utah with Interna- tional Classification of Diseases (ICD) psychiatric diagnoses and compared them to patients identified as mentally re- tarded or to "other" patients with a wide variety of physical problems or diagnoses. Overall, one-third of the nursing home patients had been given a psychiatric diagnosis. One-third of this group came directly from a State hospital and of these, 79 percent were classified as psychotic. The 50 authors questioned mixing younger psychotic patients and older physically incapacitated patients. (The mean age of psychotic patients in intermediate and personal care homes was 58.5 years.) They found that most patients received more medication and became less active over time. Without specific data on how much medication patients were actu- ally taking, the researchers speculated that overmedication might be used to achieve a more docile and compliant clien- tele. Similarly, they suggested that nursing homes may en- courage low activity levels to maintain order. Behavioral Problems and Their Management The foregoing studies have generally looked at nursing home residents with psychiatric diagnoses or with previous psychiatric institutionalization. While more specific and careful psychiatric diagnoses of nursing home residents would be useful, the behavioral problems that nursing home staff are concerned about may not fit nearly into DSM-III categories. For example, the study by Schmidt et al. (1977) found that patients with "other" and mentally retarded diagnoses received significantly more psychoactive medi- cation than those patients with psychotic and nonpsychotic diagnoses. The authors wondered if the nonpsychiatric pa- tients were receiving tranquilizers for appropriate target behaviors. In the studies by Stotsky (1970), for example, 9 of 10 "nonpsychiatric" patients showed serious behavioral disturbance. Two approaches have been used to study specific behavioral problems. The first approach, exemplified by a study by Barnes et al. (1982), uses any of a variety of behav- ior rating scales to measure improvement on specific items or on overall ratings. The second approach examines a spe- cific problem behavior in depth. This is exemplified in a study of wandering conducted by Snyder et al. Snyder et al. (1978) compared eight randomly selected nursing home residents described as wanderers with eight nonwanderers. The residents were matched on the basis of sex, level of care, nursing unit, length of stay at the current level of care, mode of ambulation, vision, hearing, and men- tal status. Using a time-in-motion study, the researchers showed that the wanderers did indeed move about more frequently and move further distances than the nonwan- derers. The wanderers engaged in significantly greater "nonsocial" behavior, behavior that occurs alone and is not directly or indirectly oriented to others. The wanderers also tended more frequently to exhibit behavior such as calling out and screaming than the nonwanderers. 51 There were no differences between the two groups as to age, sex, marital status, or diagnosis of heart disease or stroke. Wanderers had lower scores on the Kahn-Goldfarb Mental Status Questionnaire and were more likely to be diagnosed as having organic brain syndrome. There was no difference in length of stay in the patient's present room; therefore, newness or unfamiliarity was not the cause of wandering. The authors identified three types of wandering behav- ior: (1) overtly goal-directed/searching behavior, (2) overtly goal-directed/industrious behavior, and (3) apparently non- goal-directed behavior. In addition, they suggested that three psychosocial factors may influence the tendency to wander: (1) life-long patterns of coping with stress, (2) pre- vious work roles, and (3) a search for security. The authors recommended various approaches for dealing with the wandering behavior: rehabilitation ap- proaches, compensatory approaches, and management inter- ventions. Rehabilitation approaches include efforts to orient the person, to visit previous reference points in the community, to provide a vigorous schedule of physical and social activities, and to relieve anxiety. Compensatory approaches, on the other hand, include the use of environ- mental cues (such as signs) and environmental design (such as sheltered courts). The authors also discussed a variety of management implications including the need for care plans and staff meetings to heighten staff awareness of the prob- lem; charting of the resident's nonverbal behavior, mood, and time of wandering; the special problem of how to deal with wandering away from the facility; and finally the im- plications of drug use and restraints. Snyder et al. recommended a number of alternatives for working with various types of wandering behavior and re- ported that wandering subsided to a minimal level after certain changes in policy and staff responses. Such an in- depth study of a particular problem behavior provides a wealth of information on the nature of the problem and how to deal with it. More such descriptive studies of wandering, as well as of assaultiveness or of calling out and screaming behavior, would be useful. In addition, management inter- ventions should be studied further. Snyder et al. were quite negative about the use of physical restraints such as belts or geriatric wheelchairs. They did not address, nor am I aware of other studies that address, how wanderers behaved in a locked facility as opposed to an unlocked facility. Such a study could also lead to a more informed public policy on licensing of facilities. In my opinion, some wanderers would 52 be less disturbed and less disturbing if they could be placed in a locked facility, but there is at present no alternative to a locked psychiatric ward. Further exploration of these issues is needed. As indicated earlier, another type of study examines the effects of a particular intervention (be it reality orien- tation or psychotropic drugs) on particular behaviors. Thus Snyder et al. argued that "drugging should not be used as the first and only response to wandering since [it] complicate[s] and obscure[s] the causes and consequent approaches to intervention." More research is needed on this topic. A recent study by Barnes et al. on this topic compared the effectiveness of thioridazine, loxapine, and a placebo in the treatment of behavioral disturbances in nursing home pa- tients with dementia. Each subject had at least three be- havioral symptoms, including irritability, hostility, agita- tion, anxiety, depressed mood, sleep disturbance, delusions, or hallucinations. Neuroleptic medications seemed to be effective for the specific behavioral problems of anxiety, excitement, emotional instability, and uncooperativeness. A few patients appeared to benefit greatly from active treat- ment, but the majority of patients maintained on active medication did not demonstrate marked or even moderate improvement at the endpoint. As indicated in earlier studies of neuroleptic medication in institutionalized dementia patients, there was a prominent placebo effect. Sedation, extrapyramidal symptoms, and orthostatic hypotension were common side effects among patients treated with the active drugs, and this may have limited their effectiveness. Barnes et al. also emphasized the importance of searching for possible social and environ- mental solutions for behavioral disturbances to avoid the use of medication if possible. Summary and Recommendations There is a great need for research on mental illness and behavioral problems in nursing homes. This chapter has pre- sented some of the reasons for this and has reviewed previous studies. I suggest the following areas for further investigation: ® The epidemiology of mental illness in nursing homes, including basic descriptive data from na- tional surveys, more focused investigations in in- dividual communities, cross-national comparisons, 53 and prevalence data on specific behavioral disturbances; ® The adequacy of diagnosis and recordkeeping in nursing homes; ® Specific studies of chronic mental patients in nursing homes; and ® Studies of specific management interventions such as psychotropic medications or psychosocial treatments. Finally, I would recommend the development of pro- grams by a small number of university-affiliated teaching/ research nursing homes focusing on behavioral and mental disorders. Such programs would be similar to those funded by the National Institute on Aging, but would provide data more relevant to the issues discussed in the chapter. These facilities could also provide useful information for policy- makers on issues related to licensing (e.g., locked versus unlocked doors) and reimbursement (level-of-care deter- minations). I hope there will be substantially more research to discuss at the next National Conference on Mental Illness in Nursing Homes. References American Psychiatric Association. Ad Hoc Committee on the Chronic Mental Patient. The Chronic Mental Patient. Washington, D.C.: the Association, 1978. Barnes, R.; Veith, R.; and Okimoto, J. Efficacy of antipsy- chotic medications in behaviorally disturbed dementia patients. American Journal of Psychiatry 139:1170-1174, 1982. Federal Council on the Aging. Mental Health and the Elderly: Recommendations for Action. DHEW Pub. No. (OHDS) 80-20960. Washington, D.C.: U.S. Govt. Print. Off., 1980. Glasscote, R.M., Beigel, A., and Butterfield, A. Old Folks at Homes. Washington, D.C.: Joint Information Service of the American Psychiatric Association and the National Association for Mental Health, 1976. Goldfarb, A.l. Prevalence of psychiatric disorders in metro- politan old age and nursing homes. Journal of the Ameri- can Geriatric Society 10:77-84, 1962. Gurland, B.J.; Copeland, J.R.M.; and Kuriansky, J. The Mind and Mood of Aging: Mental Health Problems of the Community Elderly in New York and London. New York: Haworth Press, 1983. 54 Keller, M.B.; Klerman, G.L.; and Lavori, P.W. Treatment received by depressed patients. Journal of the Ameri- can Medical Association 248:1848-1855, 1982. National Center for Health Statistics. Characteristics, Social Contacts, and Activities of Nursing Home Resi- dents, by Zappolo, A. Vital and Health Statistics, Series 13, No. 27. DHEW Pub. No. (HRA) 77-1778. Washington, D.C.: U.S. Govt. Print. Off., 1977. National Center for Health Statistics. Discharges from Nursing Homes, by Zappolo, A. Vital and Health Statis- tics, Series 13, No. 54. DHHS Pub. No. (PHS) 81-1715. Hyattsville, Md.: Public Health Service, Aug. 1981. National Center for Health Statistics. An Overview of the 1980 National Master Facility Inventory Survey of Nursing and Related Care Homes, by Sirrocco, A. Vital and Health Statistics, No. 91. DHHS Pub. No. (PHS) 83-1250. Hyattsville, Md.: Public Health Service, Aug. 11, 1983. Sabin, T.D.; Vitug, A.J.; and Mark, V.H. Are nursing home diagnosis and treatment inadequate? Journal of the American Medical Association 248:321-322, 1982. Schmidt, L.J.; Reinhardt, A.M.; and Kane, R.L. The men- tally ill in nursing homes: New back wards in the commu- nity. Archives of General Psychiatry 34:687-691, 1977. Sherwood, S., and Mor, V. Mental health institutions and the elderly. In: Birren, J.E., and Sloane, R.B., eds. Handbook of Mental Health and Aging. Englewood Cliffs, N.J.: Prentice-Hall, 1980. pp. 854-884. Snyder, L.H.; Rupprecht, P.; and Pyrek, J. Wandering. Gerontologist 18:272-280, 1978. Stotsky, B.A. The Nursing Home and the Aged Psychiatric Patient. New York: Appleton-Century-Crofts, 1970. Teeter, R.B.; Garetz, F.K.; and Miller, W.R. Psychiatric disturbance of aged patients in skilled nursing homes. American Journal of Psychiatry 133:1430-1434, 1976. U.S. Senate. Subcommittee on Long-Term Care, Special Committee on Aging. Nursing Home Care in the U.S.: Failure in Public Policy. Supporting paper no. I. Washington, D.C.: U.S. Govt. Print. Off., 1974. U.S. Senate. Subcommittee on Long-Term Care, Special Committee on Aging. The Role of Nursing Homes in Car- ing for Discharged Mental Patients (and the Birth of a For-Profit Boarding Home Industry). Supporting paper no. 7. Washington, D.C.: U.S. Govt. Print. Off., March 1976. 55 CHAPTER 5 MAJOR MENTAL HEALTH PROBLEMS IN THE NURSING HOME: A MEDICAL DIRECTOR S PERSPECTIVE Charles N. Still, M.D., Director C.M. Tucker, Jr. Human Resources Center Columbia, SC South Carolina has a long history of care and concern for the mentally ill, beginning with public support for the in- digent mentally ill in the late 17th century. The first public mental hospital south of Virginia opened its doors in 1828 to patients from the Carolinas, Florida, Georgia, Mississippi, and Tennessee after authorization by the South Carolina General Assembly in 1821. By 1950, mentally ill persons of all races were admitted regardless of ability to pay. Large- ly from tradition, hospital care became the prevailing stand- ard of care for the mentally ill in South Carolina (Kempson 1973). The South Carolina Department of Mental Health (SCDMH), the first comprehensive mental health center, was reorganized in 1964. The institutionalized mentally ill were separated on the basis of age; those patients over 55 are now cared for in a large geropsychiatric hospital in a quasi-rural setting. In response to the increasingly urgent need to provide cost-effective long-term institutional care, the C.M. Tucker Jr. Human Resources Center was established in 1970. Since that time, the center has evolved into a 608-bed long-term care facility designated as the teaching nursing home of the SCDMH. Patients accepted for admission at the Tucker Center need skilled or intermediate nursing care under med- ical supervision. Patient care plans emphasize treatment of physical and functional disabilities associated with medical or neuropsychiatric disorders, particularly mental disorders which became manifest as behavioral expressions of under- lying neurologic disorders. Patients with a primary diagno- sis of mental disorder are admitted only if their behavior does not endanger others. The author gratefully acknowledges valuable contributions to this paper by Frederick G. Hobbs and Geraldine C. Sligh of the South Carolina Department of Mental Health. 57 The Tucker Center more closely resembles a typical wrsing home than a State mental hospital both in staffing and in physical facilities. The explanation is not surprising; revenue sources determine operational structure. The cen- ter's annual budget is just over $9 million, with about half this amount provided by State appropriations. The remain- der comes from billing for services rendered. Based on an overall collection rate of 92 percent, Medicaid contributed 85.6 percent of the center's revenues during fiscal year 1982-83. Massive Federal support provided through titles XVIII, XIX, and XX of the Social Security Act is now the lifeline for many of this country's long-term care facilities. These facilities have grown from 15,700 nursing homes with 1,177,300 patients in 1974 to 23,000 nursing homes with 1.4 million patients today. Moreover, the number of elderly persons who need nursing home care is expected to increase to 1.6 million by 1990, requiring 259,000 new nursing home beds during the current decade. More than 50 percent of nursing home patients are mentally impaired; the majority apparently suffer from senile dementia (Pegels 1981). From 1965 to 1980, annual expenditures for nursing home care increased from $2.1 billion to $20.7 billion. Pro- jections indicate a fourfold increase to $81.9 billion by 1990. Most of the burden will have to be carried by Medi- caid, barring the restructuring of health care system financ- ing (Pegels 1981; Manard 1981; National Council of Health Centers 1982). Until recently, South Carolina's Medicaid program did not provide reimbursement for psychiatric care in nursing homes, despite heroic efforts to move elderly patients from State hospitals into less costly nursing homes or community facilities. Moreover, to further limit the growth of institu- tional long-term care, South Carolina not only declared a moratorium on new nursing home facilities, but also imple- mented a statewide Community Long-Term Care (CLTC) Case Management System in January 1983. The system was modeled after the Monroe County Long-Term Care Program based in Rochester, NY (Eggert et al. 1980). Based on pre- liminary data on 800 control and experimental subjects, the South Carolina CLTC Case Management System effected a 40 percent reduction in nursing home bed use due to avail- ability of community alternatives (Nocks et al. 1982). The CLTC Case Management System currently has ultimate authority for all Medicaid payments to nursing homes in South Carolina. In June 1983, South Carolina's Medicaid plan was revised to provide for the development of the first 58 Institution for Mental Diseases (IMD). Tucker Center was not included in this program. Methods and Results In February 1983, Tucker Center opened the Frank L. Roddey Pavilion, a 308-bed intermediate care facility (ICF), as part of an effort to develop full funding for multiple levels of institutional care for the mentally ill. Built at a cost of $10 million, the Roddey Pavilion replaced 308 beds in older State Hospital facilities, with all operational sup- port (funding and personnel) provided by the transfer of State hospital resources to Tucker Center. However, this innovative effort was seriously affected by the CLTC Case Management System's determination that 40 percent of the initial group of geropsychiatric hospital patients required "less than ICF" care. To qualify for admission to a nursing home in South Carolina, aged indigent mentally ill persons must have a chronic handicapping physical condition which limits their daily living activities so that independence is lost. During fiscal year 1982-83, Tucker Center recorded 339 admissions, 165 discharges, 25 deaths, and 125,850 patient- days of care. The average monthly census rose from 293 in January 1983 to 491 in June 1983, an increase of 68 per- cent. However, total staffing increased only 46 percent during the same period, causing the staff-to-patient ratio to fall to 0.75. This is appreciably lower than the 1.0 to 1.5 ratio recommended for psychiatric facilities. Nevertheless, 70 percent of the 339 admissions were former geropsychiat- ric hospital patients who had a primary diagnosis of mental disorder upon admission to Tucker Center. About 18 per- cent of this group were returned to hospitals because of un- controllable or violent behavior. Based on the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), we identified the 10 diagnostic categories recorded most fre- quently for patients from January through June 1983. These 10 groups accounted for three-fourths of the 773 principal diagnoses (see table 1). Although the Tucker Center medical staff included one full-time psychiatrist and two psychiatric consultants, we found that six recorded diagnoses of affective and unspeci- fied mental disorder approximated that of five cases of Huntington's disease (Wright et al. 1981). These findings are especially remarkable in view of the rapid influx of a large 59 Table 1. Frequency of recorded diagnoses: January-June 1983 C.M. Tucker, Jr. Human Resources Center Rank Diagnosis Number % 1 Alzheimer's disease 152 19.7 2 Cardiovascular disease 104 13.4 3 Cerebrovascular disease 102 13.2 4 Diabetes mellitus 59 7.6 5 Pulmonary disease 57 74 6 Seizure disorders 33 4.3 7 Bone fractures 26 3.4 8 Hypertension 21 2.7 9 Arthropathy--Arthritis 16 2.0 10 Parkinsonism 14 1.8 Cumulative subtotal 584 75.5 Actual total 773 100.0 number of elderly patients from a geropsychiatric hospital during the study. Apparently, the attending physicians viewed manifestations of depression, paranoid ideation, delusions, and hallucinations as symptoms rather than as di- agnostic labels. Discussion and Recommendations The foregoing findings are difficult to explain without considering the influence of revenue sources on the diagnos- tic perception of the caregivers. In compliance with Federal regulations authorized by the Health Care Financing Administration (HCFA), Tucker Center operates strictly as a nursing home rather than as a psychiatric facility or an institution for mental diseases (IMD). The State Medicaid manual issued by HCFA in December 1982 contains explicit guidelines for identifying nursing homes as IMDs, thereby terminating their Medicaid revenues (HCFA 1982). An IMD is defined as "an institution that is primarily engaged in providing diagnosis, treatment, or care of persons with mental disease, including medical attention, nursing care, and related services." The 60 regulations further provide that an institution is an IMD if its overall character is that of a facility established and maintained primarily for the care and treatment of indi- viduals with mental diseases. Additional HCFA guidelines for identifying a nursing home as an IMD follow. A facility is an IMD if it is-- l. licensed as a psychiatric facility for the care and treatment of individuals with mental disease; 2. advertised as a facility for the care and treat- ment of individuals with mental disease; 3. accredited as a psychiatric facility by the Joint Commission on Accreditation of Hospitals; 4. specialized in providing psychiatric care and treatment; 5. under jurisdiction of the State's mental health authority; 6. more than 50 percent occupied by patients with mental diseases which require inpatient treatment according to the patients' medical records; 7. found to have a large proportion of patients who have been transferred from a State mental insti- tution for continuing treatment of their mental disorders; 8. found by independent professional review teams to have a preponderance of mental illness in the diagnoses of the patients in the facility; 9. characterized as having an average patient age that is significantly lower than that of a typical nursing home; or 10. partly or totally composed of locked wards. The National Association of State Mental Health Pro- gram Directors (NASMHPD) has strongly criticized these HCFA guidelines, claiming that Congress intended IMDs to include only State mental hospitals and free-standing pri- vate psychiatric hospitals. NASMHPD maintains that while nursing homes should not be classified as IMDs under any circumstances, HCFA should adopt the following modifica- tions to its original guidelines: ® Guidelines 1, 2, and 3 should be designated as priority guidelines in determining whether a facil- ity is an IMD. ° Final determination that a facility is an IMD should require conformity with a majority of the 10 HCFA guidelines, including at least one of the priority guidelines above. ° Guideline 4 should be limited to facilities that are "specialized in providing active psychiatric 61 treatment which can reasonably be expected to improve the condition of patients with mental diseases as reflected by review of the patients’ records." » Guideline 5 should be limited to facilities that are "operated by the State's mental health authority." ® Guideline 6 should be amended to include only those facilities in which "a majority of the pa- tients are in the facility for the primary purpose of receiving psychiatric inpatient treatment for mental disease, according to the patients' medical records." ° Guideline 7 should be amended to include only those facilities in which "a majority of the pa- tients in the facility have been transferred from a State mental institution for continuing active treatment of their mental disease." Guideline 8 should be entirely deleted. Guideline 9 should remain unchanged. Guideline 10 should remain unchanged. One new guideline should be added for clarifica- tion. This would define an IMD as a facility in which "a majority of the patients have been invol- untarily committed or voluntarily admitted to the facility pursuant to the mental health code of the State in which the facility is located for the pri- mary purpose of providing total care for the pa- tient's mental diseases." Moreover, NASMHPD insists that in applying guidelines 4 and 6, the State survey team should have at least one physician or other member familiar with the care of mental- ly ill individuals. NASMHPD agrees that senile and prese- nile organic psychotic conditions, alcoholic psychoses, drug psychoses, mental retardation, transient and organic psy- chotic conditions, neurotic disorders, personality disorders, and other nonpsychotic mental disorders should not be con- sidered mental diseases for the purpose of IMD classifi- cation, whereas schizophrenia, affective and paranoid dis- orders, childhood psychoses, and other nonorganic psychoses should be characteristic of the IMD. Finally, NASMHPD urges HCFA to exclude physically impaired patients whose mental disorder is not in itself severe enough to warrant nursing home care in designating a facility as an IMD (Schnibbe and Praschil 1983). I concur with NASMHPD and offer the following recom- mendations as national goals for implementation by 1990: 62 Recommendation I. HCFA should seriously consider the foregoing NASMHPD recommendations, especially dele- tion of guideline 8 which bases IMD status on a preponder- ance of mental illness in a facility. In addition, HCFA should consult with the National Institute of Mental Health, the Institute of Medicine, the National Academy of Sci- ences, and other appropriate agencies to determine whether rigid fiscal and clinical distinctions between IMDs and nursing homes best serve the public interest, especially in view of demographic projections which indicate 1.8 million frail elderly nursing home patients by the year 2000. Recommendation 2. Patient needs should come first in planning and in providing services, especially for the aged. The traditional designations "skilled care facility" and "intermediate care facility" should be broadened to include specialized mental health care, hyperalimentation, pros- thetics, and rehabilitation services. Intensive care units in skilled or intermediate care facilities should be supported by adequate Medicaid-Medicare funding whenever cost- effective intervention can be demonstrated. Elderly pa- tients present a complex array of biomedical and psycho- social problems which are essentially inseparable. Research on the dynamic interdependence of mental and physical ill- ness should be given higher priority than in the past. Recommendation 3. Senile dementia of the Alz- heimer type (SDAT) is cited as the fourth leading cause of death in the United States (Butler 1981). NIMH and affili- ated Federal agencies should accordingly give first priority to research efforts on dementing disorders, specifically to Alzheimer's disease, the most prevalent diagnostic category among patients in nursing homes. While searching for primary causes and for effective treatment, research on caregiver support systems should not be neglected. Recommendation 4. Who will train enough geriatri- cians to care for 1.8 million nursing home patients by the year 2000? In 1977, U.S. nursing homes employed only 800 full-time physicians, supplemented by about 14,000 part- time physicians. To overcome the traditional inertia which retards new curricula in professional schools, NIMH and other Federal grant-awarding agencies should require all research/training grant applicants in geriatrics or gerontol- ogy to submit a letter of assurance that their institutions of higher education are fully committed to the ongoing devel- opment of an affiliated teaching nursing home by July I, 1985. The teaching nursing home concept originally pro- posed by Butler (1981) should be actively set in operation in all accredited medical and nursing schools in the United 63 States by 1990. Since psychiatrists, behavioral and social scientists and other disciplines may be expected to make key contributions toward improving the effectiveness of pa- tient care teams in long-term care facilities, NIMH should give special attention to developing selected teaching nurs- ing homes as regional centers of excellence, research, and training during the next 5 years. References Butler, R.N. The teaching nursing home. Journal of the American Medical Association 245:1435-1437, 1981. Eggert, G.M.; Bowlyow, J.E.; and Nichols, C.W. Gaining control of the long-term care system: first returns from the ACCESS experiment. Gerontologist 20(3):356-363, 1980. Health Care Financing Administration. Service to Individ- uals Age 65 or Older in Institutions for Mental Diseases (IMDs). State Medicaid Manual, Part 4: Service Trans- mittal No. 3. HCFA Publication 45-4. Washington, D.C.: Department of Health and Human Services, 1982. Kempson, J.0., Healing with concern: 150 years. Psychi- atric Forum 4(1):5-7, 1973. Manard, B., ed. Working Papers on Long-term Care. Wash- ington, D.C.: Office of the Assistant Secretary for Plan- ning and Evaluation, Department of Health and Human Services, 1981. National Council of Health Centers. Nursing Home Facts in Brief. Washington, D.C.: the Council, 1982. Nocks, B.C.; Learner, R.M.; and Brown, T.E., Jr. The ef- fects of community-based long term care project on nurs- ing home utilization. Gerontologist 22(5):179, 1982. Pegels, C.C. Health Care and the Elderly. Rockville, Md.: Aspen Systems Corp., pp. 79-129, 1981. Schnibbe, H.C., and Praschil, R.E., eds. Nursing Homes Are Not "Mental Hospitals": 10 Specific Recommendations Drafted by NASMHPD's "Patient Care" Committee and Ratified by the NASMHPD Membership Are Submitted to HHS. Washington, D.C.: National Association of State Mental Health Program Directors, Aug. 29, 1983. Wright, H.H.; Still, C.N.; and Abramson, R.K. Huntington's disease in Black kindreds in South Carolina. Archives of Neurology 38:412-414, 1981. 64 CHAPTER 6 INTERFACE OF EMOTIONAL AND BEHAVIORAL CONDITIONS WITH PHYSICAL DISORDERS IN NURSING HOMES Kenneth Sakauye, M.D. Northwestern Memorial Hospital Chicago, IL The elusive interrelationship between the mind and body is especially important in nursing homes where physical and emotional problems are many, and the need for defining treatment approaches for multiple problems grows. A Na- tional Nursing Home Survey undertaken in 1977 by the Office of Health Research of 18,900 nursing homes which treat 1.3 million residents noted the high prevalence of psychiatric and physical disorders among nursing home residents. It found a primary diagnosis of mental disorders and senility in one-third of the residents and a major phys- ical impairment or disorder in more than three-fourths of them (NCHS 1979). Statistically valid incidence or pre- valence data from such surveys is questionable (Sabin 1982), and the figures may underreport mental disorders or the high degree of coexistence of physical and psychiatric dis- orders. A survey by Teeter et al. found that as many as 85 percent of 74 patients in two skilled care facilities had significant psychiatric disorders in addition to serious phys- ical illnesses, and that almost two-thirds of the psychiatric disturbances had not been diagnosed (Teeter et al. 1976). The close relationship between physical symptoms and psychopathology in the elderly requires a renewed effort to understand the possible psychosomatic factors in physical and emotional illness in this group and to provide more ef- fective diagnosis and treatment. Continuing semantic difficulties exist in defining the scope of the field of psychosomatic medicine (Lipowski 1984). In an attempt to create a useful distinction for orga- nizing various studies of psychosomatic disorders in the el- derly, we will classify the studies into four categories: (1) "classical" psychosomatic disorders (psychogenic illness), (2) somatizing responses (conversion, affect equivalents, chronic pain, factitious illness, and disability syndromes), (3) physical illness causing psychiatric symptoms (dementia, delirium, organic psychosis, or depression), and (4) psycho- logical responses to illness. 65 Since explanatory models for the relationship between effects of the mind and emotions over the body, and vice versa, have not been specifically studied in nursing home populations, this chapter will provide a selective and illus- trative review of the literature rather than an exhaustive one. It will cover the body of literature on psychosomatic medicine and the general relationships between illness and psychopathology, giving specific attention to the types of problems that are most prevalent within a nursing home setting. “Classical” Psychosomatic Disorders Historically, psychosomatic disease was seen as a distinct group of illnesses with presumed psychogenic causes. Franz Alexander et al. (1968) formulated many of the core assumptions of psychosomatic medicine from this vantage point. His group postulated seven psychosomatic disorders (asthma, hypertension, rheumatoid arthritis, ulcer- ative colitis, thyrotoxicosis, neurodermatitis, and peptic ulcer), in which a specific dynamic conflict underlies a spe- cific psychosomatic disorder. They theorized that a preci- pitating onset situation was needed to mobilize an earlier established central conflict which would lead to a break- down in the individual's primary defenses against it. They further postulated that particular zonal fixation points were associated with specific developmental conflicts, so the re- vival of the conflict affects the vulnerable organ. Their widely quoted study attempted to demonstrate a statis- tically valid linkage between specific personality and psy- chological constellations and specific diseases, but was not conclusive (Alexander et al. 1968; Nemiah 1982). The idea of distinct psychosomatic illness groups proved disappointing, especially when the efficacy of psychotherapy based on the theory did not materialize. In the elderly, evi- dence for late onset of psychosomatic diseases seems even less conclusive. The new occurrence of the major psycho- somatic diseases defined by Alexander et al. are, in fact, rare in the elderly (with the exception of essential hyper- tension), and the incidence of exacerbations of long-standing (early onset) diseases of this type does not seem to increase (Hunter 1982). The seeming decrease in such disorders is difficult to explain under this theory, unless one postulates a decrease in specific conflict or stressors, an absence of or- gan vulnerability, or the existence of higher processes of symbolic representations and expression of affect which 66 would protect against psychophysiologic changes to stress. These differences have not been tested. The general stress hypothesis has been posited in oppo- sition to the specificity hypothesis. This view stresses the common features of all psychosomatic patients and the non- specific nature of the stresses and mechanisms underlying psychosomatic symptoms (e.g., infantile personalities seem to characterize all psychosomatic patients where "organ language" is used to express affects and drives). The argu- ment about specificity has never been adequately resolved, and the hypothesis has not been widely studied (Nemiah 1982), although it remains important in explaining individual differences to stress. The current research in psychosoma- tic medicine has shifted in emphasis toward the more phys- iological, neurobiological, and endocrinological mechanisms mediating psychosomatic illness (Lipowski 1977). At present, the study of individual differences in vul- nerability to stress and onset of illness can be approached from several vantage points. Psychobiology of the Stress Response The neurophysiological, neuroendocrine, and immune- mediating mechanisms brought about by general stress re- sponses have been widely studied (Hamburg 1982; Strain 1981). Lipowski (1977) has reviewed studies showing a rela- tively specific response in levels of cortisol, adrenaline, noradrenaline, thyroxine, insulin, and testosterone to emotion-arousing stimuli. Further study of the hypothalamic regulation of adrenal and other peripheral hormones has clarified the mechanics of how stress affects the immune system (Bieliauskas 1981). The neuroendocrine axis seems to be the major mediator in the varied immune changes and organ effects that research- ers have observed in patients experiencing stress. For ex- ample, laboratory and in-vitro studies have demonstrated depressed humoral immune function and depressed lympho- cyte stimulation under stressful conditions. These functions have been linked to the decrease in growth hormone under stress and a reduction of its immunoenhancing effects and to the immunosuppressive effects of cortisol and sympa- thetic agents (Strain 1981). Improvements in fluorimetric, enzymatic, gas chromato- graphic, mass spectrometric, and radioimmunologic tech- niques have allowed researchers to identify and study increasing numbers of neuroactive substances, their pre- cursors and metabolic products, and their basic regulatory functions. The studies have extended to in-vitro and 67 animal models to explore different areas of mentation on the cellular and molecular levels to help generate con- ceptual models for a variety of affects and stress-related symptoms. For example, through a series of experiments on aplasia, the shared molecular components of chronic and anticipatory anxiety have been studied (Kandel 1983). The role of serotonin and cyclic adenosine monophosphate in prolonging the action potential and enhancing calcium influx into the sensory neuron terminals has been shown to vary with different stimuli, providing the basis for differing be- havioral responses. Also, morphologic changes have been demonstrated under chronic stress within synaptic terminals by electron microscopy. Such studies suggest possible phar- macologic intervention for many stress-related responses in the future. Adrenocorticotropic hormone has been of special inter- est in stress research, and has recently been linked to endorphin secretion, which even shares a common pre- cursor. They may be closely related as mediators of stress response, pain tolerance, and mobilization against stress (Hamburg et al. 1982; Cohen et al. 1983). Individual Differences in Vulnerability to Stress Differences in the psychobiology of responses seem to vary with age and general health, and researchers have long noted their marked individual variability. The differences in response may be due to a number of factors including intrin- sic, genetically determined factors, learned responses, or differing perceptual attentions. Researchers have given particular attention to per- sonality factors that may lead to an increased pathogenic effect on specific neuroendocrine mechanisms. The concept of the coronary-prone, Type A behavior pattern (competi- tive, aggressive, restless, impatient, hurried, achievement- oriented, dedicated to work) has demonstrated that self- induced stress and autonomic overresponsiveness to the en- vironment increase the probability of developing coronary heart disease (Jenkins 1976). Shipko has described a behavioral syndrome of alexi- thymia which is characterized by an inability to describe feelings and by an absence of fantasies that normally ex- press inner feelings and drives (Lesser and Lesser 1983). Alexithymia has been observed in patients who suffer from a variety of psychosomatic diseases and somatizing disorders. This concept is similar to earlier observations of the asso- ciation of a "psychosomatic personality" with verbal traits centered around dependency needs and with difficulties in 68 capacity for symbolization {Shipko 1982). Although the data are inconclusive (Taylor 1984), this might have particular relevance to nursing home populations where a number of conditions, including cognitive impairments, may increase alexithymic states while constraining social situations such as regimentation, crowding, understaffing, or other factors may escalate tension. Identification of individual differences in reactivity due to key personality traits (e.g., alexithymia or Type A) is im- portant in identifying predisposing features in the onset of illness under stress and in determining directions for treat- ment. We also need to clarify the factors underlying the development of these personality traits. Psychosocial Factors Empirical observations of the effects of such events as natural disasters, bereavement, retirement, and relocation on health has led to attempts to explain the variability of response based on the nature of the external stressor. The most extensive studies in this area have been undertaken by the Rahe, Holmes, Masuda school as reviewed by Minter and Kimball (1978). These studies have identified both cumula- tive stresses and specific events that require individuals to adapt and have a timely association with the onset of an illness. Their scales incorporate many life events which are often more common to younger adults than to the elderly. The stress scores are also weighted according to perceived stress by relatively young populations. When applied to the elderly, the scale sensitivity decreases markedly (Uhlenhuth et al. 1978), and these have not been used to any degree in nursing home studies. Nevertheless, such studies have expli- citly shown a low-level relationship between life change (stress) and illness and may eventually help better define the key events in onset of illness. Despite methodological limitations, similar studies could be used among nursing home residents to explore the relationship between various life changes and somatic com- plaints provided a more relevant life-events scale were de- veloped. With the narrower range of experiences in the institutionalized patient's life, the assessment of stressors must take on a different character. Often-overlooked precipitants (e.g., room changes or staff changes) may be major events leading to general stress responses and ulti- mately illness, while other apparent upheavals may be non- stressful and growth enhancing. 69 Perception, Coping Strategies, and Patterns of Decisionmaking Identifying an event itself as the primary measure of stress is limited since it omits the cognitive mediators of events. Individuals appraise and endow information with subjective meaning which is then reacted to by specific responses (cognitive, emotional, behavioral, and physio- logical). For example, the timing and predictability of even such a major event as the death of a loved one influence how stressful the event is perceived to be (Neugarten 1984). An individual's personal experiences, ego strength, degree of appropriate external supports, and perceived level of control will also influence how stressful an event is felt to be (Lazarus 1977). Measures enabling a more objective assessment of the cognitive mediators of stress must be developed for nursing home residents. Horowitz et al. (1977) has modified how the life-events scale is administered by asking respondents to assess the stressfulness of events experienced through sub- jective reports. Also, a number of approaches to testing the accuracy of perceptions or sensations, obtaining measurable physiological changes, or looking for perceptual cues or spe- cificity of attention has been widely used in experimental settings (Pennebaker 1982). We need to selectively apply many of these measures within the nursing home population to clarify cognitive patterns of response. Somatizing Responses The psychoanalytic concepts of conversion, somatiza- tion, hypochondriasis, fictitious illness, chronic pain, and disability syndromes are often thought of as psychosomatic symptoms although they imply no actual link with a physio- logical problem. Somatization is the expression of emotion- al discomfort and stress in the form of bodily symptoms. The cause of the somatizing reactions may relate to intra- psychic conflicts, interpersonal relationships, and social or environmental problems (Ford 1983). Despite the diversity of their presentations, the common origin of the symptoms is to relieve an emotional tension in a symbolic way. It of- ten represents a displacement of unconscious forces or conflicts (aggressive, sexual, or oral drives) into a physical symptom, a symbolic communication of an idea or emotion (e.g., weakness as a way to communicate feelings of help- lessness), or a means to compel attention or obtain some secondary gain (Barsky and Klerman 1983). 70 The relationship between the various forms of soma- tization disorders is not known, and somatization occurs in a number of psychiatric disorders. In addition, if the disorders are somatic representations of repressed mental elements or stress, as in "classical" psychosomatic diseases, the differ- ence in presentation and physiological effects must be ex- plainable. Alexander postulated that the major difference between neurotic somatization disorders and psychosomatic diseases was the presence of the higher psychic processes of symbolic representation and expression of affects in the neurotic disorders (as evidenced in fantasies). These theoretical considerations must be tested more fully. The true incidence of somatic disturbances is difficult to ascertain. In any general medical practice, the most common single diagnosis is "nonsickness"; "the worried well" account for as many as 38 percent of all visits to the doctor (Ford 1983). The prevalence of somatization is also quite high within a general hospital, comprising 5 percent of psy- chiatric consultations (Folks et al. 1984). Several factors may be involved in the seeming increase in somatic disorders in the elderly. Consideration must be given to Verwoerdt's hypothesis that such defenses in the el- derly are "energy conserving defenses" rather than active defenses, and thus increase as age and disability increase (Verwoerdt 1982). Also, given the higher incidence of phys- ical illness in the elderly, somatization may reflect a hypervigilance, heightened arousal, or selective monitoring over real health concerns (Pennebaker 1982). Finally, the tendency to express emotional distress in bodily terms may be culturally or socially determined by fostering the expres- sion of certain bodily complaints and discouraging other symptoms (Barsky and Klerman 1983). This seems especially true of certain immigrant groups and among people of lower socioeconomic status or education, who constitute a high proportion of many nursing home populations. Identification of somatization becomes more difficult among nursing home residents because psychiatric and phys- ical conditions so frequently coexist. For example, urinary incontinence may be due to structural or neurological causes (e.g., spinal cord disease or bladder disease), iatrogenic causes (e.g., medications), or transient causes (e.g., urinary tract infections or acute illness); but psychological factors are often important in causing or perpetuating the problem in nursing home patients. Incontinence may help fulfill needs for dependency or may serve as a means of symboli- cally expressing hostility or anger (Ouslander 1981). A detailed history, physical examination, and urologic or 71 radiologic study are required to determine the cause, but even these may be inconclusive. Basic research needs to be undertaken to lead to a better understanding of the dyna- mics underlying such somatic behaviors. Another example of this problem relates to atypical depression in the elderly. Elderly patients with depression often present with physical complaints (masked depression) or gross confusion which mimics dementia (pseudodemen- tia). These expressions of depression have received consid- erable attention due to their prevalence among the elderly in nursing homes. The difficulty in differentiating such presentations from organic conditions remains an ongoing concern. The major factors that differentiate somatization from a mood disorder are presumably sociocultural and a lack of psychic activity (Ford 1983). Lower social class and lack of education, family or social networks that are receptive to the use of the sick role as an expression of emotional illness, and alexithymia have all been correlated with atypical de- pression. An absence of medical findings or a disability in "excess" of the physical findings may lead to presumptive evidence for depression. Confirmation of the diagnosis is often based on the patient's response to somatic therapies for depression, which has significant limitations due to rela- tively high nonresponse rates to antidepressants even in clearcut depressive illnesses. A more recently studied syndrome, pseudodementia, has been described as a depression-induced organic mental dis- order (McAllister 1983). The picture of dementia is pre- sented, but the course of the illness is not compatible with the diagnosis of dementia. In the absence of clear diag- nostic criteria, Wells, (1982) original criteria for diagnosing pseudodementia by specific patterns of errors rather than specific scores on cognitive tests have been widely accepted (with minor modifications) as a preliminary screening measure (Jarvik 1981). Social withdrawal, global errors of omission, a patient's pointing out errors rather than hiding them, acuteness of onset, and past psychiatric history (which have not been well EM all suggest the presence of a depressive pseudodementia. The problem is still more difficult since we know that learned dependent responses can be engendered as a nega- tive effect of institutional life. Withdrawal and passivity may not be signs of either illness or depression in a nursing home setting. Thus the addition of converging objective measures to assist in the diagnosis is often required. 72 Neuropsychological test batteries, computerized axial tomo- grams (CAT scans), positron emission tomograms (PET scans), nuclear magnetic resonance (NMR) scans, spectral analysis of electroencephalograms (EEGs), average evoked potential EEGs, and a variety of metabolic studies may be used to rule out reversible dementias. The diagnosis of pseudodementia is generally made by exclusion when no major organic findings are discerned, but may represent atypical presentations of affective symptoms in patients with neurological disease (McAllister 1983). As in other somatization states, pseudodementia is often explained on the basis of primitive psychological defenses (gross denial and withdrawal) and with difficulties in verbal and symbolic expression. However, from clinical experience, there is often no apparent explanation for such severe regression either in terms of a clear precipitant (the presence of "an early organic brain syndrome") or in terms of past social and personal development. The high incidence of pseudodementia among nursing home residents may allow more detailed studies of this disorder. Organic Causes of Psychological Symptoms Physical illness and dysfunction in almost every organ system can directly affect brain function and, although not specific to the aged, is more prevalent among the aged. Potentially reversible conditions are often overlooked or merely pharmacologically "controlled" due to a lack of awareness of the pathophysiologic mechanisms underlying many behaviors (Levenson and Hall 1981; Sabin et al. 1982). The etiologic mechanisms are well known in many areas such as in cardiovascular or pulmonary disease which act through decreased cerebral perfusion or hypoxia, drug ef- fects, certain endocrine dysfunctions, and direct central nervous system (CNS) effects of diseases. The etiologic mechanisms of other areas, such as the anxiety, agitation, impulsivity, psychosis, or depression which have been noted in many cases of dementia, are less clear. The current DSM III classifications (APA 1980) have labeled the concomitant occurrences of psychiatric symp- toms and dementia as "organic delusional syndromes" or "organic personality syndromes," implying a causal rela- tionship. However, the onset and mechanisms for such symptoms are poorly predicted and only occur in a fraction of individuals with dementia. Such symptoms often have multiple origins, and studies on neurobehavioral syndromes 73 need to be examined closely to determine the pathophysio- logic mechanisms for disturbances and the associated fac- tors in the development of symptoms. One well-understood example of such effects is seen in studies on hypoxia. The major determinants of cerebral blood flow are the cardiac output, the perfusion pressure at the level of the brain, and the resistance of the cerebro- vascular bed. The elderly have a much smaller margin between easily tolerable levels of hypoxemia and hypoxia due to age-dependent decreases in PO, a relatively fixed cardiac output, and frequent arteriosclerotic vascular dis- ease in selected end organs. Any condition causing a fall in oxygen tension often brings the cerebral blood flow to the steep phase of the hemoglobin dissociation curve (lowering oxygen saturation), which the elderly person cannot compen- sate for. Shunting of blood within the brain to subcortical regions under this condition is often a secondary manifesta- tion which increases the cognitive disturbances of the elder- ly. Symptoms are often heralded by delirium, paranoia, or agitation (Hall 1980). The varied psychiatric disturbances observed in Alz- heimer's dementia are not as well understood. The selective degeneration and changes in cholinergic cortical neurons provide an excellent opportunity to study functional locali- zation, the neurobiology of memory and cognition, and learning strategies through various interventions in behav- ioral disturbances. The primary effects of the disorder can be separated from an impaired individual's inappropriate re- actions to the psychosocial environment through careful multidimensional clinical assessments and basic research in controlled laboratory studies of the neurobiology of the dis- order. The core issues are (l) the degree to which the change in function is due to a shift in the mixture of cell types as opposed to a change in the functioning of individual cells, (2) the pharmacologic interventions which can mitigate these changes, and (3) the types of environmental changes that can reduce stress in the affected individual. Psychiatric Effects of Illness Illness can herald marked changes in self-concept, body concept, and interpersonal relationships, can increase fears of death or of permanent dependency, and can precipitate depression, anxiety reactions, paranoid responses, or other psychiatric disturbances. Such problems may be increased within a nursing home setting, not only because of the 74 severity and frequency of patients' physical problems, but because of limitations in psychosocial supports, active coping styles, and cognitive limitations in the residents. Physical illness and disease have very personal meanings to individuals. Different diseases have their own special impacts (such as disfiguration, colostomy, and re- strictive diets) which may cause a major change in an individual's lifestyle and require retraining or rehabilita- tion. However, external factors such as the acuteness of an illness, the degree of discontinuity in lifestyle, and attitudes of family or the degree of social network supports can influ- ence how threatening an illness seems. A patient's affec- tive response to the trauma of illness is partly determined by the cognitive aspects of integration. In many instances, there may be clear reactive typol- ogies based on the premorbid personality style of the patient which could aid in the selection of therapeutic interven- tions, although such assumptions have not been widely tested. Typical reactions to the stress of illness have been summarized for different personality types (Groves and Kucharshi 1978). Horowitz (1976) elaborated on three per- sonality styles (hysterical, obsessional, and narcissistic) to demonstrate the variety of information processing and cop- ing styles under stress and their impact on symptom forma- tion. He demonstrated that an obsessional personality views a stress such as an illness as a loss of control or as punish- ment for not taking care of something. This type of person engages in active problemsolving, but it typically involves endless rumination without reaching decisions; moreover an obsessive person's perceptions are often detailed but iso- lated from emotions. Selective attentiveness is another common trait. Treatment approaches in such a case would emphasize making the patient a partner in the proposed treatment, providing detailed information about the illness and the treatment, and focusing interventions on making meaningful connections between ideas and their emotional impact. In looking at each personality style, we can make in- ferences about the level of conflict, the most likely psycho- logical reactions, and effective management approaches. However, therapy is still often difficult due to the crisis nature of the problems, difficulty in maintaining neutrality and an objective framework for therapy (so that therapy of- ten loses its focus), and frequent denial of psychological themes by the patient. Among nursing home residents, lack of motivation or cognitive impairment may decrease the effectiveness of traditional therapeutic interventions. Thus 75 we need a better understanding of how the elderly react to serious life events, as well as varying strategies for preven- tion of illness onset and intervention geared toward the special circumstances of the elderly. Interventions In addition to the specific medical and pharmacologic treatments for the physical basis of disease, the develop- ment and testing of clinical intervention models have taken several directions. Stress reduction has been attempted through cognitive therapies and psychotherapy to overcome perceptual distortions and to facilitate decisionmaking. A reduction of physiologic responsiveness to stress has been attempted through relaxation measures, other behavioral modification techniques, and pharmacotherapy (Hamburg et al. 1982; Lipowski 1977). However, effectiveness of such techniques in the long-term reduction of symptoms has not yet been documented. An outstanding example of the effects of stress on ill- ness or mortality among residents of institutions involves relocation. After early studies demonstrated a high rate of mortality and morbidity following institutional moves, a number of more recent studies have shown quite variable outcomes due to differences in intervention strategies and risk factors in the moves (Coffman 1983; Nirenberg 1983). Clinical studies involving patient interviews or testing have suggested that the effects of relocation can be mediated by factors that decrease the perceived threat of the move. En- vironmental quality (congruence between the person and environment) and personal management strategies that showed a high degree of coping effort, high level of cog- nitive restructuring (integration), and a felt degree of mas- tery over the relocation led to the best outcomes (Lieber- man and Tobin 1983). Personality variables and social sup- ports have shown inconsistent relationships to adjustment following relocation. Engel's biopsychosocial model for the study and care of a patient provides one construct for understanding these variable effects. He postulates a hierarchy of natural sys- tems (personal, social, and biological) which interact to produce the observed behavior or appearance (Engel 1980). Engel's model is difficult to define operationally, but has broad clinical implications and has been used as a heuristic teaching model. Although the effects of stress are multi- variate, an intervention affects every level of the system; this implies that an intervention at one segment of the chain 76 may stop a "negative outcome." Specifying the appropriate "level of intervention" and its impact on the biopsychosocial system can be looked at in developing and testing treatment strategies. Agenda for Research The complex problem of the interface between emo- tional and behavioral conditions with physical disorders in the elderly has been described along four main areas: psy- chogenesis of illness, somatizing disorders, physical illnesses which lead to psychiatric symptoms, and psychiatric reac- tions to illness and disability. A large body of knowledge already exists in these areas but has not been expanded into selective populations such as nursing home residents. Future research would be particu- larly relevant in the following areas: 1. Basic epidemiological studies e Prevalence and incidence of various disorders and personality traits within nursing homes with careful attention to methodological issues and identification of the range of disorders e Prospective and longitudinal studies that follow the course of individuals prior to and following a number of stressors eo Natural history, course, outcome, and costs of psychosomatic and somatizing disorders 2. Research on impact of psychosocial factors eo Development of age- and environment-specific stress scales eo Clarification of mediating effects of synthetic ego functions 1. Perception studies (accuracy of perception, perceptual schemas, correlates of report- ing and memory, and situational variability of performance) 2. Effect of various levels of cognitive impairment eo Determination of a possible hierarchy of influences eo Test of applicability of major hypotheses to nursing home populations 2 Neuroendocrine /Neurobiological research eo Relationship between age differences and effects of chronic disease 77 6. Cellular and molecular research Neuroregulator functions Mediating role of neurotransmitter systems Genetic factors eo Pharmacologic interventions Personality features and related reactive styles in relation to psychosomatic disorders (giving special consideration to alexithymia) Elaboration of coping strategies and tasks (with range of responses artificially limited to reflect the nature of institutional settings) Organic causes of psychological symptoms e Description of the range of presentations of different conditions e Pathophysiology of effects ("atypical presen- tations" suggesting different pathophysiologic mechanisms) eo Localization of effects Elaboration of psychiatric presentations of physical illness eo Stress response syndromes eo Personal factors influencing the meaning of illness e Sociocultural factors influencing the impact of illness Development and evaluation of new treatment models aimed at (1) stress reduction, (2) methods to alter coping strategies, and (3) level of intervention (Engel) eo Relaxation measures e Behavior modifying techniques ® ® Verbal psychotherapies Cognitive/learning therapy approaches eo Milieu intervention strategies Development of improved psychopharmacologic interventions for stress reactions. 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Stress and psycho- pathology in the aged. In: Jarvik, L.F., and Small, G.W., eds. Psychiatric Clinics of North America: Aging. Vol. 5, No. l. Philadelphia: W.B. Saunders, 1982. pp. 131-144, 82 CHAPTER 7 ALZHEIMER'S DISEASE IN NURSING HOMES: CURRENT PRACTICE AND IMPLICATIONS FOR RESEARCH Burton V. Reifler, M.D., M.P.H. Associate Professor Director, Alzheimer's Research Program Department of Psychiatry and Behavioral Sciences University of Washington Seattle, WA With high hopes, millions of friends and family members of Alzheimer's disease victims follow the daily news. Along with those of us who are concerned with Alzheimer's disease in our work, they are particularly alert to research on two issues: learning the cause and finding a cure. I shall not dwell on these goals because the history of medical discovery suggests they are unlikely to occur soon. Unless we have almost unprecedented good fortune, the search for a cause (or causes) will progress slowly, with each advance present- ing a new series of questions, and improved treatment will be measured by preservation of cognitive and functional skills rather than full recovery. Therefore, I will spend little time on the topics which generate the most excite- ment (such as acetylcholine, physostigmine, naloxone, and aluminum), emphasizing instead what I consider to be the fundamental issues--the most important of these being ac- curate diagnosis of Alzheimer's disease. Let us briefly consider a few other chronic diseases to see if we have learned the etiology and means of prevention or cure. The search for cancer's cause has led in many di- rections including genetic factors, exposure to toxic sub- stances, and infectious agents. Some forms of cancer can be prevented or cured; others are thought of in terms of improved 5-year survival; some are so severe that there are no 5-year survivors. There are numerous forms of heart disease, with atherosclerosis and hypertension the most common causes, but we are far from a precise understanding of why they occur, and treatment success is measured by reduction in symptoms and sequelae, not cure. Parkinson's disease is frequently mentioned as a model for improved understanding and treatment of Alzheimer's; the possible similarity is the identification of a specific chemical de- ficiency and treatment through supplying this missing sub- stance. However, the result of 15 years of clinical a3 experience with raising brain levels of dopamine is that Parkinson's sufferers have been helped but not cured. Learning the cause and cure of Alzheimer's disease is indeed our goal, but we have not yet accomplished this with other major chronic diseases. The opportunities for research on Alzheimer's disease are extraordinary, partly because so little has been done, even on the most fundamental aspects of the problem. Imagine for a moment that in individuals over 65, cancer was not considered a disease, but "senile deterioration"-- despite the fact that it did not occur in most old people, that it seemed to occur in several forms, that it was mani- fested by distinct pathologic changes, and that in younger individuals it was identified correctly as an illness. Imagine that despite overwhelming evidence that cancer was a dis- ease, many people including health professionals, regarded it as part of growing old. This is not a farfetched analogy when it is applied to Alzheimer's disease. In a study by Barnes and Raskind (1981), 64 patients from three different nursing homes and under the care of a total of 20 physicians were evaluated. The patients were selected because they met accepted cri- teria for dementia. When investigators applied additional well-established criteria to make a more precise determina- tion, over 90 percent could be given a specific diagnosis, usually Alzheimer's disease. On the exiting charts of these patients, 69 percent contained either no diagnosis related to dementia or only a nonspecific diagnosis such as organic brain syndrome or senility. This is analogous to 69 percent of cancer patients in nursing homes remaining either undiag- nosed or with only the general diagnosis of malignancy, with no additional details such as primary location, presence of metastases, or degree of differentiation on microscopic examination. A recent Journal of the American Medical Association commentary further explored the adequacy of nursing home diagnoses (Sabin et al. 1982). In this report, the investiga- tors confirmed a diagnosis of dementia in 132 nursing home patients. As in the study by Barnes and Raskind, the pa- tients were drawn from several nursing homes and had many different physicians. However, upon reviewing the charts, the researchers found that "two thirds ... had diagnoses such as senility, chronic brain syndrome, or schizophrenia, . « « the others had general medical diagnoses that made no mention of a neurological or psychiatric ailment." In my judgment, these two studies are representative of the state of the art with respect to the diagnosis of 84 Alzheimer's disease in the nursing home; it is usually done carelessly or not at all. We don't need additional research to document this; any further studies on recognition of Alzheimer's disease in nursing homes should have some other focus, such as the effectiveness of educational or consulting programs in improving the detection rate. There are several reasons for the failure to diagnose Alzheimer's disease. One is the frequently mentioned nihilistic view of cognitive impairment in the elderly: "Why bother making a diagnosis you can't do much about?" If this argument is valid, it should also be applied to illnesses such as carcinoma of the pancreas and severe forms of emphy- sema and cardiomyopathy. Obviously, I do not suggest this, but offer it to illustrate the peculiar perspective that many physicians have toward dementia, which allows them to justify ignoring it. With cancer and heart disease, in order that we can learn more and improve treatment, we place great emphasis, and rightly so, on its detection and classi- fication. The same need exists with Alzheimer's disease. I would also like to interject that the premise "nothing can be done" is simply false. Research that my colleague Eric Larson and I did indicates that between one-quarter and one-half of Alzheimer's patients will show improvement in cognitive or physical ability, or in "activities of daily liv- ing," when treated for coexisting medical illness-or certain psychiatric symptoms (Reifler et al. 1981; Larson et al. in press). Examples of treatable illnesses or symptoms include depression, Parkinson's disease, overmedication, hypothy- roidism, congestive heart failure, and paranoia. These out- patient findings can be tested in nursing home patients. Recognition and treatment of coexisting problems require no new technology or knowledge and will lead to improved cognition and functioning in many nursing home patients. Perhaps the overemphasis on finding completely reversible causes of dementia has delayed investigation of how often there are treatable components or symptoms in irreversible dementia. Another reason for inadequate diagnosis may be the confusing terminology in the literature on Alzheimer's disease. We have the terms Alzheimer's disease (sometimes modified by the adjective senile or presenile), dementia of the Alzheimer's type (DAT), senile dementia of the Alz- heimer's type (SDAT), primary neuronal degeneration (PND), and senile dementia (SD). There is obviously room for sim- plification; perhaps the time is right for the professional community, with the assistance and support of the National Institute of Mental Health (NIMH) and the Mental Disorders 85 of Aging Research Branch (MDARB), to suggest a uniform terminology. Lack of payment for medical services related to Alz- heimer's disease, particularly by Medicare, is another factor in not diagnosing it. Payment is inconsistent and seems to depend on the interpretation of the specific Medicare car- rier. Many families of patients with Alzheimer's disease have shown me denial-of-payment forms which explain that Medicare does not reimburse for counseling related to cop- ing with the normal aging process--a statement that these families find ironic, irritating, and sometimes demoralizing. I recall a situation where a couple, patient and spouse, felt so defeated by Medicare's contention that the patient was not suffering from a disease that they gave up on getting any further evaluation or help. To continue the cancer analogy, these rejections of benefits would be similar to refusing payment for cancer treatment for the elderly on the grounds that such services were only to help people cope with the physical changes of normal aging. The need for Medicare to pay for basic psychiatric services for Alz- heimer's disease patients, indeed for all mental illness in the aged, does not require proof by additional research; it is a matter of common sense. I have intentionally dwelt on what I consider needless barriers to accurate diagnosis because there are so many implications for treatment and research. I will move on now to some real diagnostic issues, which are difficult enough without the complications of indifference or denial. Two important diagnostic issues that need additional study concern the stages of Alzheimer's disease and iden- tification of diagnostic subtypes. Among others, Reisberg and coworkers (1982) and Hughes and coworkers (1982) have developed staging criteria which could prove useful in devel- oping baseline data on the rate of progression in order that the effectiveness of various treatments can be compared. The related issue of diagnostic subtypes was addressed in part in an editorial by Wells (1982), which urged that we characterize demented patients not only by cognition, but by behavior and affect as well. For example, a report by Ron and coworkers (1979) suggests that there may be a group of patients with combined cognitive and affective symptoms who do not show the progressive decline expected with Alzheimer's disease. In addition, my colleagues and I share a clinical impression, not yet tested, that agitation is an indicator of poor prognosis in Alzheimer's disease. (Per- haps these patients have coexisting Parkinson's disease.) Other obvious possibilities for subcategories of Alzheimer's 86 disease are family history of the disease and coexisting medical illness. My own area of research (Reifler et al. 1981), the rela- tionship between dementia and depression, illustrates one diagnostic intricacy. I believe there are at least three cate- gories of combined cognitive impairment and depression: cognitive impairment due solely to depression, depression superimposed on an irreversible dementia (usually Alz- heimer's), and a nonprogressive cognitive and affective disorder that is still poorly understood. My recommendation for research related to staging the disease and identifying diagnostic subtypes is similar to my recommendation regarding terminology. I think it is time for the scientific community to attempt to develop both uniform staging criteria and to suggest diagnostic subcate- gories. Any results will inevitably be flawed, but the at- tempt could serve the dual purposes of highlighting the need for accurate diagnosis in nursing homes and facilitating research efforts, perhaps even collaborative efforts involv- ing many nursing homes. Again, MDARB might provide the impetus for developing staging criteria and suggesting diag- nostic subtypes. The final consideration related to accurate diagnosis may be the most crucial. I refer to clinical-pathologic cor- relations. In a recent prospective study from Finland by Sulkava and coworkers (1983), 18 percent of a group of pa- tients who had been carefully diagnosed as having primary degenerative dementia did not show the pathologic changes characteristic of Alzheimer's disease. In retrospective studies, or those using less rigorous criteria, the rate of diagnostic error could be expected to be even greater. It is imperative to make a neuropathological diagnosis whenever possible; studies that make this correlation should be given added priority. I have made a number of suggestions related to diag- nosis. They are as follows: i. We don't need additional studies showing the lack of recognition of Alzheimer's disease in nursing homes. We do need studies to show how to im- prove its recognition. 2. We need research to examine to what extent nurs- ing home residents with Alzheimer's disease can improve when coexisting illnesses are identified and treated. 3. With the assistance and support of NIMH and MDARB, we need to attempt to develop a uniform terminology regarding Alzheimer's disease, along 87 with suggestions for staging the disorder and iden- tifying diagnostic subcategories. 4. Research that includes neuropathological correla- tions should be encouraged and given priority. While my primary objective here is to discuss our fail- ure to diagnose Alzheimer's disease in the nursing home and to suggest ways to improve this, let me set forth some other issues that are important and worthy of investigation. This list is a sampler; it is not complete. The issues I have chosen to discuss are these: l. Investigations of the potential cost savings in the care of Alzheimer patients, with two specific examples: eo Mental health consultation to newly admitted nursing home residents, and e® Improved use of so-called little ticket items in nursing home care; 2. Epidemiologic studies; 3. An investigation into the relationship between nutrition and cognition; and 4, Therapeutic trials. An intriguing study by Levitan and Kornfeld (1981) ex- plored the clinical and cost benefits of routine psychiatric consultation to a group of elderly patients who were ad- mitted to the hospital for surgical treatment of fractured femurs. The findings are impressive. Compared to a con- trol group who did not receive psychiatric consultation, the treatment group had a significantly shorter length of stay (30 vs. 42 days) and twice as many patients in the treatment group returned home rather than being discharged to a nurs- ing home. The interventions included treating postoperative delirium, recognizing and treating depression, and advising hospital staff and patients' families, particularly to correct their misimpressions that such patients would have a poor prognosis. This idea could be tested in nursing homes. Newly ad- mitted residents could be randomly assigned to receive or not receive psychiatric evaluation; both groups could then be followed for selected outcome measures such as cogni- tive status, degree of nursing care required for behavioral problems, and even rate of discharge back into the commu- nity. The intervention need not be limited to psychiatric consultation, but could be broadened to include geriatric mental health consultation available through mental health centers. It would also be encouraging if such consultation led to improved detection of mental illness in nursing home 88 residents who were not seen by the consultant, thus demon- strating an educational side effect. The other area of cost-related research I mentioned is "little ticket" items. As described by Moloney and Rogers (1979), this term refers to tests, procedures, and items that are used frequently and individually cost little. A study by Larson and coworkers (1983) showed that at one hospital inadequate medical orders regarding intravenous fluids amounted to an estimated $138,000 per year in wasted material and labor. This type of cost saving is well suited to nursing homes in that it deals more with labor costs and relatively less ex- pensive items than with expensive, sophisticated medical technology. For example, what are the potential savings from a bladder training program for incontinent Alzheimer's patients? The cost of the staff time for the bladder training of one group could be compared to the costs of catheter, bag, urinary tract infections, and nursing care for a control group. These two cost issues (consultation and "little ticket" items) highlight the enormous potential savings from even the smallest gains in treating Alzheimer's disease. If the cost of nursing home care is around $2,000 a month, any treatment that prolongs independent living for 6 months saves $12,000 for one patient. For the estimated half million Alzheimer's patients already in nursing homes, this would have meant a total savings of $6 billion. Even post- poning admission to a nursing home by 6 months in only 10 percent of the cases would have saved $600 million. In addition, once in the nursing home, even modest gains in treating Alzheimer's disease through mental health consul- tation and improved use of "little ticket" items might result in savings of hundreds of millions of dollars. Given the ex- tent and expense of Alzheimer's disease, the cost-benefit potential of successful research in these areas is great. Epidemiologic studies on Alzheimer's disease are also urgently needed. So far, the only risk factor we have iden- tified is family history (Heston et al. 1981); it remains con- troversial whether women are at greater risk. Some established leads that await further epidemiologic investigation are history of head trauma (Rudelli et al 1982), maternal age at birth (Cohen et al. 1982), and cases of Down's syndrome in the family (Heston et al. 1981). Other possible associations to explore include, but are not limited to, history of smoking and alcohol use, occupational hazards, use of aluminum-containing aerosols, personality traits, ethnic background, and diet. 89 Apart from any possible dietary role in the cause of Alzheimer's is the issue of whether proper diet can improve, or delay worsening of, cognitive function in the patient with Alzheimer's. So far, supplements of lecithin and choline have not been proven to help, but these have been findings from generally short-term studies looking for improvement, not for maintaining cognitive ability or slowing the decline. A recent report by Goodwin and associates (1983) suggests an association between decreased cognitive function and low levels of specific nutrients in healthy, noninstitutionalized elderly persons. In nursing home patients, we need prospec- tive studies that include not only cognitive improvement, but also slowing of deterioration as an outcome measure. Again, we must remember that even small gains can lead to huge savings. Assume the cost difference between the lowest level of care and the intermediate level for a resi- dent in a given nursing home is $300 per month (a conserva- tive estimate). If dietary interventions could delay the transfer to intermediate-level care for a little over 3 months in only 10 percent of the estimated half-million nursing home residents with Alzheimer's disease, the savings would be $50 million ($1,000 X 50,000). The final area of research I will mention is therapeutic trials of pharmacologic agents. Consistent replication of finding a deficiency of acetylcholine in the brains of Alz- heimer's victims (Coyle et al. 1983) is by far the most exciting development of the past decade, and many investi- gators are studying ways to augment cholinergic function with drugs. Presynaptic enhancement through dietary lecithin and choline, intrasynaptic augmentation with physostigmine or tetrahydra aminoacridine (THA) and postsynaptic stimulation with acetylcholine all merit further study as ways to improve the function of cholinergic neu- rons. We now know that lecithin and choline will not im- prove cognitive function in most Alzheimer's patients; we do not know if they will lead to improvement, perhaps in combination with other agents, in certain diagnostic sub- types, or if they can help delay cognitive decline. We also await other studies in progress, such as those investigating the usefulness of agents that block intestinal absorption of aluminum (which may play a role in the loss of cholinergic neurons) and use of the narcotic antagonist naloxone, which is being tested on the theory that endog- enous opiate-like substances interfere with cognitive func- tion (Roberts 1981). Even the humble cup of coffee may be worth testing, as it has been reported to have a naloxone- like effect, even in decaffeinated form (Boublik et al. 1983). 90 I share my colleagues' enthusiasm for continued clinical trials, but I put it last because I think it has enough momen- tum to continue to grow. The potential role of the nursing home in conducting clinical trials is obvious, but for the most part, is undeveloped. Upon reviewing my comments, many important ques- tions concerning Alzheimer's disease are conspicuous by their absence, but time does not permit me to address them. Among the remaining questions are these: ° What are the most effective ways of keeping victims of Alzheimer's disease out of nursing homes? ° Should we make payments directly to families who care for these patients at home? ° What is the minimal acceptable standard of cog- nitive assessment upon admission to a nursing home? ° What is the most efficient and effective approach to the workup of Alzheimer's? ® How can we effectively treat such troublesome complications as belligerence and wandering? ® What form of staff training is best? ° Can a rotating bed system be established to give families of Alzheimer's patients respite? ® Can we develop accurate predictions on how many new nursing home beds we are likely to need as the elderly population increases? Each of these issues is worthy of the full-time attention of many investigators. It has been my privilege to have the chance of calling attention to some of the issues involving Alzheimer's dis- ease and the nursing home. It is our shared opportunity to think of additional questions and to find the answers. References Barnes, R.F., and Raskind, M.A. DSM III criteria and the clinical diagnosis of dementia: A nursing home study. Journal of Gerontology 36:20-27, 1981. Boublik, J.H.; Quinn, M.J.; Clements, J.A.; Herington, A.C.; Wynne, K.N.; and Funder, J.W. Coffee contains potent opiate receptor binding activity. Nature 301:246-243, 1983. Cohen, D.; Eisdorfer, C.; and Leverenz, J. Alzheimer's disease and maternal age. Journal of the American Geriatrics Society 30:656-659, 1982. 91 Coyle, J.T.; Price, D.L.; and Delong, M.R. Alzheimer's disease: A disorder of cortical cholinergic innervation. Science 219:1184-1190, 1983. Goodwin, J.S.; Goodwin, J.M.; and Garry, P.J. Association between nutritional status and cognitive functioning in a healthy elderly population. Journal of the American Medical Association 249:2917-2921, 1983. Heston, L.L.; Mastri, A.R.; Anderson, E.; and White, J. Dementia of the Alzheimer type: Clinical genetics, natural history, and associated conditions. Archives of General Psychiatry 38:1085-1090, 1981. Hughes, C.P.; Berg, L.; Danziger, W.L.; Coben, L.A.; and Martin, R.L. A new clinical scale for the staging of dementia. British Journal of Psychiatry 140:566-572, 1982. Larson, E.B.; Reifler, B.V.; Featherstone, H.J.; and English, D.R. A prospective study of dementia in elderly outpatients. Annals of International Medicine, in press. Larson, E.B.; Scott, D.H.; and Kaplan, H.G. Inadequate medical order writing: A source of confusion and increased costs. Western Journal of Medicine 139:50-54, 1983. Levitan, S.J., and Kornfeld, D.S. Clinical and cost benefits of liaison psychiatry. American Journal of Psychiatry 138:790-793, 1981. Moloney, T.W., and Rogers, D.E. Medical technology--A different view of the contentious debate over costs. New England Journal of Medicine 301:1413-1419, 1979. Reifler, B.V.; Larson, E.; Cox, G.; and Featherstone, H. Treatment results at a multi-specialty clinic for the impaired elderly and their families. Journal of the American Geriatrics Society 29:579-582, 1981. Reifler, B.V.; Larson, E.; and Hanley, R. Coexistence of cognitive impairment and depression in geriatric outpatients. American Journal of Psychiatry 139:623-626, 1982. Reisberg, B.; Ferris, S.H.; and Crook, T. Signs, symptoms, and course of age-associated cognitive decline. In: Corkin, S.; Davis, K.L.; Growdon, J.H.; and Wurtzman, R.J., eds. Alzheimer's Disease: A Report of Progress. New York: Raven Press, 1982, pp. 178-179. Roberts, E. A speculative consideration on the neurobiology and treatment of senile dementia. In: Crook, T., and Gershon, S., eds. Strategies for the Development of an Effective Treatment for Senile Dementia. New Canaan, Conn.: Mark Powley Associates, 1981, pp. 247-320. 92 Ron, M.A.; Toone, B.K.; Garralda, M.E.; and Lishman, W.A. Diagnostic accuracy in presenile dementia. British Journal of Psychiatry 134:161-168, 1979. Rudelli, R.; Strom, J.O.; Welch, P.T.; and Ambler, M.W. Posttraumatic premature Alzheimer's disease: Neuro- pathologic findings and pathogenetic considerations. Archives of Neurology 39:570-575, 1982. Sabin, T.D.; Vitug, A.J.; and Mark, V.H. Are nursing home diagnosis and treatment inadequate? Journal of the American Medical Association 248:321-322, 1982. Sulkava, R.; Haltia, M.; Paetau, A.; Wikstrom, J.; and Palo, J. Accuracy of clinical diagnosis in primary de- generative dementia: Correlation with neuropathological findings. Journal of Neurology, Neurosurgery, and Psychiatry 46:9-13, 1983. Wells, C.E. Refinements in the diagnosis of dementia. American Journal of Psychiatry 139:621-622, 1982. 93 CHAPTER 8 ASSESSMENT AND TREATMENT IN NURSING HOMES: IMPLICATIONS FOR RESEARCH Richard R. Bootzin, Ph.D. Northwestern University Evanston, IL and William R. Shadish, Jr., Ph.D. Memphis State University Memphis, TN As a consequence of the deinstitutionalization move- ment, the length of stays and number of residents in mental hospitals have been markedly reduced. The responsibility for long-term care for former mental patients has fallen largely to nursing homes. For example, in 1977, over $2 bil- lion were paid to nursing homes for mental health services (Kiesler 1980). Thus, nursing homes now occupy a central role in mental health policy. Since former mental patients do not typically require intensive nursing care, they are more likely to reside in intermediate care facilities (ICFs) than in skilled nursing facilities (SNFs). In our research in Chicago, we found that 65 percent of intermediate care residents were former men- tal patients (Shadish et al. 1981b). Similar findings of a high proportion of former mental patients residing in ICFs have been found in studies in Utah (Schmidt et al. 1977), Massa- chusetts (Phillips 1978), and Texas (Dittmar and Franklin 1980a, 1980b). ICFs and board and care homes constitute the two long-term care settings in which most former men- tal patients reside. While this volume focuses on the mentally impaired elderly in nursing homes, we might note that not all nursing home residents are elderly. This is particularly true of resi- dents in ICFs. The average age of residents in our research was 48, and only 25 percent of our sample was older than 62 (Bootzin and Shadish 1983). Similarly, in a random sample of mental patients discharged to nursing homes between 1975 and 1977 in Texas, 28.5 percent were under 60 (Ditt- mar and Franklin 1980a). And in another report, the majority of mental patients discharged to nursing homes after 1975 were younger than 65 (Barnett 1978). Issues regarding the assessment and treatment of men- tal disorders within nursing homes must consider two very different populations. The first consists of geriatric 95 residents who may be receiving adequate physical care but whose mental and emotional needs are unmet because they are unrecognized. The problem of undiagnosed mental dis- orders in geriatric nursing home residents is the focus of many of the chapters of this book. The second consists of the large numbers of former mental patients who reside in ICFs as long-term care residents. Since many readers may be unfamiliar with this second category of residents, we will present a brief overview of our findings. This will provide a context for our research recommendations which are pre- sented in the next section. Nursing Homes and Chronic Mental Patients Between 1977 and 1982, we engaged in a longitudinal study of 163 chronic mental patients in 12 Chicago-area nursing homes (Bootzin and Shadish 1983). As mentioned earlier, the average age of the patients was 48. The aver- age period of mental hospitalization was 57.5 months or almost 5 years. The group was composed 59 percent of women and 41 percent of men; 82 percent were Caucasian, 13 percent black, and 5 percent other races. Only 5 percent of the group were currently married and 61 percent had never been married. Most of the sample, 67 percent, had no physical diagnosis despite their admission to a nursing home, whereas 90 percent were on psychotropic medication. Although patients were drawn into the study from both SNFs and ICFs, the vast majority of the patients resided in ICFs. The ICFs tended to be large facilities housed in older buildings resembling the so-called total institution (Goffman 1961) in which residents eat, sleep, and spend most of their time in the home. Residents thus depend upon the nursing home for the basic social activities of everyday life. Since there are many views as to what constitutes success in a long-term care facility, we solicited the views of various groups having an interest in nursing homes (Sha- dish et al. 1982). As a first step, we sent a survey to aca- demics, Federal program managers, legislators, nursing home administrators and staff, and nursing home residents and their relatives. We asked each respondent to rank order the following 18 criteria of successful community care facilities: Il. The staff are interested in the patients. 2. Former mental patients are housed separately from other patients. 3. The facility is clean. 96 F The facility residents are actively involved with local community members. 5. The patients do not "act out" aggressively. 6. The facility has an activity program. 7. Staff like their jobs and do not quit often. 8. The food is adequate and nutritious. 9. The staff cooperate with outside agencies. 10. The staff have special training in dealing with former mental patients. 11. There is a high ratio of staff to residents. 12. The residents are neat and clean. 13. Patient care plans are initiated at admission and updated appropriately. 14. Patients have private bedrooms. 15. There is an active program to move residents into independent community living. 16. Sufficient care is provided so residents can stay out of the hospital. 17. There is an active program to decrease patients’ inappropriate behavior or psychiatric symptoms. 18. There are many therapeutic and rehabilitation programs. One hundred and eight respondents completed the sur- vey. Using a multivariate scaling procedure, we were able to locate the various groups of respondents and the 18 criteria in the same two-dimensional space. The results indicated that there were substantial differences in em- phasis between different interest groups. On the one hand, Federal program managers and academics put greater stress on treatment and rehabilitation (criteria 10, 13, 15, 16, 17, and 18) than did other groups. On the other hand, residents and their relatives, nursing home staff and administrators, and legislators put more emphasis on the quality of the resi- dential care (criteria 3, 6, 8, and 12). These results reinforce the need to assess multiple measures of success. In particular, variables reflecting the custodial and asylum functions of the institution (such as quality of life and subjective well-being) have not received the same degree of attention as have measures of treatment effectiveness (such as recidivism, psychopathology, and social integration). We conclude that policymakers have something to learn from those who live and work in nursing homes. Mental health policy must be informed by a broader range of considerations than just those dealing with effec- tiveness of treatment. As will be seen, this conclusion has been reinforced by our longitudinal findings. For the most part, the treatments 97 received by former mental patients residing in nursing homes consist of drugs and activity therapy. Residents receive little individual or group psychotherapy. Moreover, the longer residents stay in the nursing home, the less therapy they receive. Research by other investigators has indicated that it is not always the most expensive settings providing the most intensive psychotherapy that are the most effective. For example, in one study, chronic schizophrenics, upon release from full-time hospitalization, were randomly assigned either to drug treatment alone or to drug treatment com- bined with day treatment. Of the 10 day treatment centers involved, 6 were more effective than drug treatment alone in preventing rehospitalization. Those six were low-cost centers that focused primarily on offering a "sustained non- threatening environment" and favored occupational therapy over psychotherapy (Lin et al. 1979). The nursing homes in our study had a similarly good record with respect to rehospitalization. Only 15 to 29 percent of the patients in our sample were rehospitalized during a 1-year period following admission to a nursing home (Bootzin and Shadish 1983). The 29 percent figure includes rehospitalizations in general medical hospitals for other than psychiatric reasons, so the recidivism rate is likely to be somewhere in the midrange between 15 and 29 percent. Thus nursing homes appear to do a good job of preventing return to the mental hospital when compared to the 40 to 50 percent figures reported in a review of psychiatric rehabili- tation programs (Anthony et al. 1972). Very few mental patients, however, leave the nursing home for independent living in the year after admission. Nursing homes are clearly not transitional facilities that assist mental patients in moving from the mental hospital to the community. We also saw little change in social integration during the year after admission (Shadish and Bootzin, in press). Mental patients in nursing homes are largely unemployed, and they control and spend relatively little money. This is also true of most mental patients who are in inpatient wards and those who are treated on an outpatient basis at local community mental health centers (Shadish and Bootzin, in press). The former mental patients housed in nursing homes showed substantial stability of psychiatric symptomatology over the l-year period (Bootzin and Shadish 1983). They also showed increased psychomotor retardation and de- creased personal neatness, although this did not appear to 98 be a consequence of continuing to reside in the nursing home, as even patients who left the nursing home showed similar changes over the l-year period. Mental patients in nursing homes are a relatively unhappy group of people as indicated by measures of sub- jective well-being (Bootzin and Shadish 1983). However, they are not substantially less happy than other disadvan- taged groups in society--the poor, the unemployed, or chronic mental patients. Moreover, the majority of patients reported that they preferred to live in the nursing home when compared to the place that they lived last, unless they had last lived independently. Thus, of the variety of cus- todial care placements they had experienced, the residents preferred nursing homes. Our research suggests that nursing homes serve pri- marily custodial care functions in the mental health system. They provide little rehabilitative treatment and little rehabilitative outcome is accomplished. For the most part, patients are not returned to community living and their symptomatology is not beneficially affected. Nursing homes, on the other hand, do prevent return to the mental hospital. Services are provided that serve to maintain the patient in the home. Nursing homes have become the new "total" institution of mental health policy. That is, they are very much like the institutions that the deinstitutionaliza- tion movement was intended to eliminate. The success of nursing homes in becoming the centerpiece of mental health policy for chronic mental patients suggests that the impor- tance of custody and asylum functions of institutions has been underestimated. Research Recommendations lI. Develop norms for standard diagnostic assessment instruments for the elderly and for nursing home residents. The technology for assessment already exists. Whether the researcher is interested in assessing patient variables, fa- cility characteristics, community variables, or treatment effectiveness, many measures are already available. How- ever, this is not the case for appropriate normative data. Although it has been widely recognized that normative data for standard psychological testing of the elderly are lacking (e.g., Lewinsohn and Teri 1983; Santos and VandenBos 1982), remarkably little has been done to correct the problem. Normative data are particularly important because of the increased heterogeneity of performance of the elderly 929 (Schaie and Geiwitz 1982). Too often stereotypical views of the elderly are maintained on the basis of incomplete data from subgroups of the elderly. Thus, providing an improved data base for the elderly should be among the highest research priorities. Although the inadequacy of normative information regarding the elderly has been widely commented upon, the same problems, with less commentary, exist for other nursing home residents. For example, a substantial portion of nursing home residents have mental or emotional dis- turbances. Although comprehensive surveys of the mental health of nursing home residents have been conducted, such as the National Nursing Home Surveys (NCHS 1977), norma- tive data for nursing home residents and the elderly against which to compare such findings are sparse. 2. Evaluate the changes in reliability and validity when instruments developed for other populations are used with nursing home residents. During the past decade, the evalu- ations of mental health programs in applied settings such as nursing homes have increased. As a result, we need to have reliable and valid instruments available to measure con- structs of interest. Evaluators must often adapt a measure for use in a setting that differs greatly from the setting in which it was originally developed. Many authors have warned about the reliability and validity problems that follow from such adaptations (e.g., Cronbach et al. 1972; Nunnally 1978). One cannot assume that an instrument that is reliable and valid in a particular setting with a specific population will be equally reliable and valid in other settings with other populations. Researchers can, however, take steps to identify mea- sures that are likely to be reliable and valid in a novel set- ting (Shadish et al. 1981a). First, before research is begun, they can search out instruments developed in settings similar to the new one. Second, they should examine the specific items on the scale to assess their fit with the con- struct to be measured. The title of a scale cannot be taken as a serious indicator of the construct it measures. Third, the researchers must determine whether the items reflect phenomena that occur with any frequency in the new set- ting. Many of the scale items may refer to behavior that is more adaptive or more impoverished than is typically seen in the new setting. Fourth, the researchers can use multiple measures of the same construct, particularly in the initial stages of a project. Measures that do not reach acceptable levels of reliability and validity can be dropped from later stages of the research. Fifth, and most important, the 100 researchers should conduct a preliminary study that evalu- ates the reliability and validity of the measures in the new setting. An illustration of the fifth recommendation can be seen in our evaluation of chronic mental patients in nursing homes. In seeking a measure of symptomatology, we selected four behavior rating scales: the Inpatient Scale of Minimal Functioning (ISMF) (Paul et al. 1976), the Nurses Observational Scale for Inpatient Evaluation (NOSIE-30) (Honigfeld et al. 1966), the MACC Behavioral Adjustment Scale (Ellsworth 1971), and the Psychotic Inpatient Profile (PIP) (Lorr and Vestre 1968). None of the four scales was designed for use with both our population (chronic mental patients) and our setting (nursing homes). We conducted a reliability study (Shadish, et al. 1981a) in which three observers rated 85 residents on each of the four scales. We found decreased interrater reliability and validity coefficients for all of the measures when compared to the coefficients reported in the test manuals. For our particular setting and population, the NOSIE-30 had the highest aggregate reliability, and its validity coefficients were also acceptably high. =~ Although we selected the NOSIE-30 for use in our longitudinal study, there is of course no single measure that is best for all settings and populations. Instead, investigators must evaluate reliability and validity, and hence the suitability, of measures for their particular setting and population. 3. Develop assessment methodologies that are sensitive to the problems of degradation of data when the data have administrative and financial consequences. This is a most serious problem for policymaking, program management, and conducting research in nursing homes. Since the finan- cial viability of a nursing home may depend upon third-party reimbursement, researchers should expect corruption of any data that have financial consequences (Cochran 1978). For example, according to some interpretations of Medicaid regulations, nursing homes receiving Medicaid reimburse- ment are prohibited from having a majority of patients with a primary psychiatric diagnosis. If more than half of the residents have a psychiatric diagnosis, the institution would be classified as a psychiatric hospital with a different set of reimbursement procedures and different agencies respon- sible for reimbursement. Many nursing homes underreport the number of patients with primary psychiatric diagnoses in order to avoid any problems with reimbursement (Still 1983). This has resulted in considerable misinformation about the extent of mental illness among nursing home 101 residents. Since many intermediate care facilities have a substantial number of former mental patients as residents, they may feel particularly threatened that their financial circumstances will be adversely affected if diagnoses are reported accurately. Solutions to this problem may vary depending upon the nature of the research. In descriptive and survey research, it may be necessary to employ independent interviews, ratings, or observation as alternatives to relying upon nursing home records. Audits and random checks may also help identify corrupted data. In any case, researchers should attempt to identify the data most subject to degradation so that research findings are not compromised. 4. Engage in more research on the diverse needs and goals of all groups having an interest in the delivery of nursing home care; i.e., residents, relatives, staff, admini- strators, legislators, bureaucrats, academics, and the general public. This recommendation has two purposes. First, it will help researchers ask more informed questions about nursing home care for the chronically mentally ill by deliberately soliciting multiple perspectives. Since no single group has a monopoly on understanding the needs and goals of nursing home care, reliance on just one or two such groups will limit research that directly addresses many important issues related to care in this setting. Second, by soliciting and taking seriously the input of various interest groups, researchers increase the chances that each group will have a stake in the research and will use the research results to help foster policies that will respond to their needs. Many methods are available to accomplish this task. One method--a survey followed by a multivariate statistical analysis--was presented earlier (Shadish, et al. 1982). Other multivariate techniques are also available (Cook, et al. 1984), as are simple interviews, participant observation, and techniques taken from the needs assessment literature. 5. Employ a multiconstruct research strategy by including variables such as cost and quality of life in addition to more traditional variables such as recidivism and psychopathology. This recommendation follows directly from the previous recommendation which recognizes that different constituencies have different goals. For example, as we noted previously, we found that Federal program managers and academics valued highly the treatment and rehabilitation aspects of the nursing home while residents, relatives, staff, and legislators placed much greater em- phasis on variables reflecting the quality of the home as a 102 residence (Shadish, et al. 1982). Research on nursing homes must reflect this heterogeneity of goals and include mea- sures of, for example, recidivism, psychopathology, social integration, subjective well-being, quality of life, and cost. Two variables deserve particular attention. Factors af- fecting the quality of life in nursing homes have been neglected despite their perceived importance to many constituencies. This set of variables, in particular, may provide a lever to improve nursing home programs signi- ficantly. Cost/benefit analyses are also important because they often lead to financial policies that have a major im- pact on other variables. In addition, policymakers and managers are likely to take action when data have impli- cations for their budgets (Hendricks 1984). 6. Engage in more research on the custodial and asylum functions of nursing homes. Most mental health research has focused on model programs that emphasize rehabili- tation and treatment (Bachrach 1980b; Stein and Test 1978), whereas little research has focused on the types of facilities that receive the bulk of the mental health dollar and pri- marily provide custodial care and asylum--i.e., intermediate care nursing homes and board and care homes. This reflects the biases of many academics and Federal policymakers as we indicated in our discussion of recommendation 5. How- ever, institutions dealing with chronic mental patients must provide custodial care and asylum, as well as treatment (Bachrach 1979; Shadish and Bootzin, 1981a, 1981b). Model programs have been unable to meet the needs of chronic mental patients in the community during the past 25 years partly because they have attended insufficiently to these more mundane functions. Nursing and board and care homes are practical for chronic mental patients in part because they do fulfill these functions. As such, substantially more research should focus on the custodial and asylum functions of nursing homes. 7. Identify model nursing homes thought to be exceptionally successful. Such models can generate hypo- theses about innovations that can be evaluated in other homes. The literature on mental health policy often refers to such innovative projects as Fairweather's Lodge (Fair- weather 1980) or Test and Stein's (1978) Training in Com- munity Living project. These are exceptionally worthy programs that help policymakers understand the feasibility and advantages of innovative ways of providing care (Bach- rach 1980b). But despite the substantial role of nursing homes in mental health policy, nursing homes have not been 103 the site of model programs for the care and treatment of chronic mental patients. Two strategies would seem useful for studying model nursing homes or innovative practices. The first is the demonstration project; i.e., implementation of a novel idea in one or more nursing homes to study its feasibility and advantages. The second is the search among the existing practices of nursing homes for innovative ways of providing successful care that might be transferred to other homes. This could be accomplished using such techniques as nomi- nation of innovative nursing home practices by experts or local practitioners and examination of case studies, archival records, or existing research (Cook et al. 1984). At this early stage, it would be better to err by including inter- ventions that might later prove not to be generally ap- plicable than to set too stringent a criterion. 8. Design more research on the dissemination and implementation of robust innovations. Policy researchers are often disappointed by the failure of apparently suc- cessful practices to transfer with the same effectiveness to another setting. But this failure to transfer should not be surprising. Any study at a single location will necessarily be confounded with many unique characteristics of that setting such as a particularly charismatic director or staff member, a benign owner who allows profits to be used to improve the home, or the selection of patients for admission to the home who are the least disturbed and most likely to succeed. Thus the apparent success of an innovative approach in any particular setting might be due to any of several spurious and idiosyncratic causes. This is especially true when the techniques for identifying innovations (case studies, expert nomination, or the examination of records) are unable to confirm an innovation's effectiveness and robustness. These techniques can be quickly implemented and will often pro- vide excellent information about innovations, but they will yield many false leads that must be weeded out at a later stage of the research. After potentially successful innovations have been identified, the researchers will need to study the effec- tiveness and robustness of the innovations with high quality techniques. To study effectiveness, the randomized ex- periment will likely be the method of choice, although high quality quasi-experiments, such as time-series, regression- discontinuity, and linear structural modeling techniques, can often be useful when randomized experiments are not feasible. 104 To study robustness, researchers should follow two recommendations. First, if possible, they should construct ideas about a potentially successful innovation on the basis of already existing data from multiple settings in which the innovation has been implemented. The settings should be as heterogeneous as possible with respect to the many irrele- vant variables that might yield spurious findings--e.g., the size of the home, urban or rural location, and so forth. A random sample of homes will yield the best results. How- ever, heterogeneous homes can deliberately be chosen in lieu of random sampling (Cook and Campbell 1979). An alternative to reviewing data from multiple homes is the selection of innovations based on a review of the research literature. Quantitative synthesis techniques such as meta- analysis would prove useful here. The second way to foster robustness is to conduct high quality studies of effectiveness in multiple settings rather than in a single setting. Even the addition of a single site over the original site will provide some information about the robustness of the innovation. Investigators who develop innovations will have to take a more active role in research on dissemination and implementation if they hope to see their innovation widely adopted. 9. Design and implement financial policy research. Financial policies may have dramatic effects on the delivery of mental health services within nursing homes. In our discussion of recommendation 3, we pointed out that data may be degraded in response to financial consequences. Similarly, the quality of care and the resident mix can be substantially influenced by financial policy. More research on the consequences of financial policy changes on the delivery of care is needed. Regional experiments evaluating different financial strategies should be used to inform policy. Vladeck (1980), for example, discusses Federal and State changes in reimbursement practices that might im- prove nursing home quality and provide alternative settings for those elderly who do not need nursing home care. 10. More research is needed that anticipates emerging issues in the future of nursing home care. Policymakers and policy researchers have often been accused of responding to crises in the mental health care system rather than anti- cipating needs that might arise in the future. Crises must be addressed, of course; but a crisis mentality often miti- gates against thoughtful, high quality research that neces- sarily takes time to execute. Therefore, we need to anti- cipate the forthcoming issues of importance in nursing home 105 care for the mentally ill and to begin to conduct research now about ways to address future crises. We can easily anticipate what some of these future crises might be (Shadish, in press). For example, with an increasingly elderly population, Medicare and Medicaid costs associated with nursing home care can only increase. Policymakers will undoubtedly feel pressure to reduce costs by tightening eligibility requirements for the care of mental patients in such settings. Where will the ineligible patients go? Will they go to board and care homes, back to their families, or to the street? What research questions can be investigated now that may help improve the alternatives available to such individuals? Certainly it is advantageous to pose such questions now rather than to wait until a crisis is upon us. Another emerging issue is the extension of legislation and court decisions concerning patient rights in nursing homes (Barnett 1978). The legal system has intervened in mental hospital care over the past two decades increasing the salience of such matters as predicting a patient's dan- erousness (Stone 1976), the type of treatment provided Bernard 1977), and least restrictive environments (Bachrach 1980a). Barnett (1978) suggests how these legal matters might apply to nursing home care for mental patients as well. How will nursing homes cope with these new aspects of the care they must provide? Attending to such matters may increase their costs and decrease their profits. Some homes may close rather than spend additional money to comply. Researchers must begin to anticipate such strains on the nursing home system and must evaluate potential solutions so that the rights of mental patients can be met while maintaining a viable mental health delivery system. Conclusion In summary, nursing homes are an important component of our current national policy for providing care and treat- ment to the chronically mentally ill. A guiding principle of our research and recommendations has been to be realistic. Thus, we must recognize that the long-term care of chronic mental patients requires the existence of institutions such as nursing homes that can provide asylum and custody. In this regard, an increased emphasis on neglected variables such as the quality of life within the nursing home is long overdue. If we are to have an effective national mental health policy, mental health must focus on nursing homes 106 and on the financial and practical constraints under which they operate. 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Hospital and Community Psychiatry 31: 255-259, 1980b. 107 Ellsworth, R.B. Manual: The MACC Adjustment Scale (Revised). Beverly Hills, Calif.: Western Psychological Services, 1971. Fairweather, G.W., ed. The Fairweather Lodge: A Twenty- Five Year Retrospective. San Francisco: Jossey-Bass, 1980. Goffman, E. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. New York: Double- day Anchor, 1961. Hendricks, M. Dollar decisions. Evaluation News 5:108-111, 1984. Honigfeld, G.; Gillis, R.D.; and Klett, C.J. NOSIE-30: A treatment-sensitive ward behavior scale. Psychological Reports 19:180-182, 1966. Kiesler, C.A. Mental health policy as a field of inquiry for psychology. American Psychologist 35:1066-1080, 1980. Lewinsohn, P.M., and Teri, L., eds. Clinical Geropsychology: New Directions in Assessment and Treatment. New York: Pergamon Press, 1983. Lin, M.W.; Caffey, E.M.; Klett, C.J.; Hogarty, G.E.; and Lamb, H.R. 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In Stein, L.L, and Test, M.A., eds. Alternatives to Mental Hospital Treatment. New York: Plenum Press, 1978. Vladeck, B.C. Unloving Care: The Nursing Home Tragedy. New York: Basic Books, 1980. 109 CHAPTER 9 BEHAVIORAL APPROACHES FOR ENHANCING MENTAL HEALTH IN THE NURSING HOME Carol J. Dye, Ph.D. Department of Psychology and Geriatric Research Education and Clinical Center St. Louis Veterans' Administration Medical Center St. Louis, MO Behavioral approaches to mental health involve more than simply applying learning principles to the therapeutic setting. While this is where behavior therapies began, today we can rely upon any of the findings of the psychology lab- oratory and other research settings regarding the antece- dents and consequents of behavior (both overt behavior and thought patterns). These findings can be implemented using the most effective methods for behavior change, whether they come from studies of social, physiological, or psycho- logical behavior. Their focus can be on the individual or- ganism, groups, or the larger environments within which behavior occurs. Thus behavior therapies include not only the traditional behavior modification approaches that have dealt so effectively with phobias, anxieties, etc., but bio- feedback, modeling, and cognitive behavioral procedures as well. Contrary to stereotyped perceptions, behavior therapies are not mechanistic procedures involving a therapist "pulling strings" or "pushing buttons" without a humanistic or em- pathic relationship with the patient (Franks et al. 1982). Behavioral approaches are flexibly applied with the thera- pist intensively involved in determining the best method to meet each patient's unique needs and situation in life. This philosophy is reflected in a statement by Davison and Stuart (1974) as to the goals and focus of behavior therapy--namely, the alleviation of human suffering and the enhancement of human potential; and improved functioning as indicated by increased skill, independence, and satisfaction of the client. These goals are sought within the context of a contract between the client and therapist in which the goals and techniques of therapy are mutually agreed upon. These same standards hold for research involving behavior therapies. 111 Among therapeutic approaches that can enhance the mental health of the elderly in nursing homes behavioral approaches are often chosen. From the perspective of the older adult client, behavioral approaches are appealing and fruitful. They provide easily understood conceptualizations for the solution of mental health problems focusing on spe- cific behaviors, and they are problem-oriented without em- phasizing the negative diagnoses often applied to older adults. As a result, they give the client greater control over, and greater hope for, the therapeutic process (Thorenson and Mahoney 1974; Davison and Wilson 1979; Cautela 1969). Additionally, behavior therapists tend to be more active than therapists of other orientations. Thus older adults may perceive them as more supportive (Rechtschaffen 1959). Behavioral approaches are also conducive to research efforts because they are already data oriented and scien- tifically based. These therapies require gathering baseline data for behavior, forming hypotheses regarding the ante- cedents and consequents of behavior, and selecting the best method for testing the behavioral change hypothesis when the contingencies are rearranged by the gathering of data. Applications of Behavior Therapy to Mental Health Problems in the Nursing Home Behavior therapy has been applied to two main classes of symptoms within elderly populations (Richards and Thorpe 1978). One class of symptoms involves socially significant behaviors: i.e., incontinence, inability to feed oneself, inability or refusal to engage in the so-called activities of daily living, and lack of socialization. These behaviors are usually those brought to the attention of ad- ministrators, supervisors, or consultants by the staffs that work with the elderly. They are usually seen as manage- ment problems for the staff, rather than problems of which older adults themselves complain. Yet they are important mental health problems for older adults in nursing homes. Anyone who has worked with an older adult who experiences the physical and mental decline leading to incontinence knows that the mental health of that elderly person also declines in the process. For older adults who remain cog- nitively aware of themselves, the loss of bowel and bladder control, loss of fastidiousness in feeding themselves, etc., are devastating occurrences. Behavior therapies have been successfully applied to these problems in nursing home 112 populations. While not all the issues have been resolved, the behavioral perspective offers some solid results and con- tributions toward resolving problems involving socially sig- nificant behaviors. We refer the reader to two excellent reviews of the results of numerous studies that provide guidelines for the application of behavioral therapies to these areas (Richards and Thorpe 1978; Patterson and Jackson 1980). The other class of symptom problems to which be- havioral therapy has been applied is the clinically significant behaviors (Richards and Thorpe 1978) such as depression, anxiety, paranoia, and psychologically based physical symp- toms. These are conditions that give older adults a great deal of emotional discomfort. In nursing home settings, they often underlie and give rise to somatic complaints when they are not, or cannot be, expressed directly. Even more than the socially significant behaviors, these clinically significant symptoms and behaviors are central problems of mental health for elderly persons in nursing homes. Behavioral intervention in this area should be tar- geted as a top priority for research in nursing home popu- lations for several reasons. In the first place, both anxiety and depression are commonplace among all ages (Secunda et al. 1973) and among older adults especially (Gerner 1979; Gurland et al. 1980). We can assume from theory con- cerning their etiology that the incidence of both anxiety and depression is greatly increased among nursing home popu- lations. By reason of their incidence alone, these behaviors should be targeted for research. Secondly, the clinically significant behaviors should be emphasized for research because of the subjectively felt discomfort that accom- panies them. And thirdly, behavior theory has already helped develop an understanding of the incidence, course, and therapy of these conditions in younger populations. Be- havioral approaches can undoubtedly alleviate these same mental distresses in elderly nursing home populations. Since we have an effective body of knowledge already at hand, we need to research how to apply it. While intervention with the clinically significant be- haviors among nursing home residents has generally been neglected, we can cite three recent contributions in this area. In his book Depression in Late Life, Blazer (1982) devotes a chapter to depression in long-term care facilities. He focuses on problems in diagnosing depression among the frail elderly, the effects of the environment in contributing to depression, and the need for flexible and creative ap- proaches to intervention. He notes the dearth of studies on 113 depression in long-term care facilities and suggests various levels of intervention including environmental, family, and group, as well as individual, approaches. In another chapter in this book, Steuer (1982) discusses some of the specific behavioral approaches that have been used successfully with depressed elderly persons. Another book (Sobel 1982) focuses on the application of behavioral approaches in ter- minal care situations. Sobel develops a theoretical behav- ioral thanatology in the approach to depression in the dying patient, pain and the terminally ill cancer patient, grief in families, and other such issues. This is an important contri- bution to the application of existing behavioral therapies to a problem common to later life. Following we briefly review some areas of behavioral intervention that can lead to improved mental health among nursing home residents. We also emphasize search issues needing attention. Because of its assumed high incidence in nursing homes, we will focus on alleviating depression using behavioral approaches. Since the same issues we discussed in relation to depression can be applied to the other clini- cally significant behaviors, we will touch on the other symp- tom areas only briefly. Issues for Behavioral Research on Depression in the Nursing Home Two main directions are important for behavioral re- searchers who wish to focus on the problem of depression in the nursing home. The first goal should be to determine its incidence within that population. This implies not just a head count, but determining why it is that some elderly people in nursing homes become depressed while others ir the same environment do not. Questions regarding the in teraction of the patients' coping styles and capacities, eg¢ strengths, social supports, and degree of frailty (mental anc physical) and characteristics of nursing home environment: are some of the basic variables that need to be considered. Other hypotheses regarding why some people becom: depressed while others do not could spring directly fron behavior theory on depression. Specifically, a basic hypo thesis holds that depression is likely to result from sudde changes in the environment in which a previously know reward system is no longer salient and in which the nes reward system is not yet known (Lewinsohn et al. 1976 Thus the move from a home environment to a nursing hom setting could itself precipitate depression. Research migt 114 be able to determine how the reward system in the new setting relates to the onset, duration, and intensity of depression. The reward system could be defined as the number of pleasant events encountered as measured by the Pleasant Events Scale (MacPhillamy and Lewinsohn 1971). The suddenness of the change from one environment to another may be another important variable in the onset of depression (Schulz and Brenner 1977). Suddenness could be defined as the length of time between initially knowing of an impending change in residence and the actual move. The impact of suddenness could be modified by visiting the new residence prior to placement and by other preparations for the move by family or social service agencies that might help the older adult learn the rules and reward system of the new setting. Of course, this assumes the older adult has the ability to learn the objective and interpersonal reward system of the nursing home. The second goal of research on depression as a mental health problem for the nursing home elderly should be to ex- plore the effectiveness of behavioral interventions. Such interventions can focus either on the individual or on the environment. The first approach involves working with the older adults directly, either modifying therapeutic proce- dures previously developed with other age groups or developing new approaches to the specific problems and manifestations of symptoms of depression within the nursing home context. The second approach is to alter the environ- ment to create a milieu that would be less depressive. Of course, these individual and environmental foci are not mutually exclusive. Older adults are particularly vul- nerable to the impact of the environment by virtue of their lessened energy, declining cognitive function, and physical frailty (Lawton and Nahemow 1973). Moreover, the totality of the nursing home environment, in that almost all de- cisions are made for the residents (Goffman 1961), may make individual change virtually impossible unless the en- vironment is also changed. Perhaps this is one of the reasons that researchers and clinicians have paid so little attention to the elderly in nursing homes. It is intimidating to have to consider and manage such complex interactions and issues (Steuer 1982). Let us examine these two approaches for what they might contribute to our quest for improved mental health of nursing home residents. Individual Approaches If we borrow techniques used with younger adults, we have the basic knowledge in behavior therapy necessary to 115 make a good beginning toward resolving the depression of older adults in the nursing home. Yet, as Richards and Thorpe (1978) note, behavior therapy with the elderly to date has been unsophisticated. Thus we need to apply the rich knowledge we have from younger populations to the milieu of the nursing home in a developmental framework. Researchers need to determine the special issues, pro- cedures, and adjustments necessary for using these behav- ioral interventions with the nursing home elderly. For example, do elderly nursing home residents have the ability to respond to behavior therapy? Do their declining abilities simply mean that there need to be more sessions to rein- force behaviors, or are greater modifications in approach called for in working with these older adults? Some of the problems involved can be seen in a study by Garfinkel (1979) in which a therapist was called upon to help a 75-year-old woman reduce her anxiety. The therapist planned a program of progressive relaxation therapy and desensitization, making a number of modifications in stan- dard behavioral procedures. Whereas younger adults might take two or three sessions to complete the relaxation training, the therapist worked with this older woman twice a week for a month to accomplish the relaxation techniques. In addition, the therapist used repetition of instructions, role modeling, and prompting to fix her learning and sent a cassette tape of relaxation instructions home with her between sessions. When it came time to do the hierarchical ratings of anxiety-producing situations for desensitization, the woman had difficulty understanding the process of as- signing relative values. She also had difficulty in recording her behavior so that baseline data could be obtained. In fact, she absolutely refused to do so. Even with these difficulties, however, the treatment was effective. Follow- up indicated she was relatively free of anxiety and used the techniques she had been taught. Thus, while the therapist used proven procedures of behavior therapy, modifications were necessary to achieve effective treatment. Other documented case and group studies such as this one need to be performed. Directions for research on behavioral interventions with the depressed elderly in nursing homes may arise from de- scribing those who do and do not become depressed in this setting. If certain coping skills are found to discriminate between those older adults who become depressed and those who do not, an obvious research project would be to see whether teaching those coping skills reduces depression and enhances mental health. Meichenbaum (1974) suggested a 116 three-step skill acquisition procedure consisting of (1) ana- lyzing the series of accessible cognitive processes involved in a problemsolving task, (2) translating these into specific self-statements, and (3) modeling these and having the patient rehearse them. This procedure seems to have promise for use with the elderly because of its active, mul- tidimensional, self-instructional process. As yet, it has not been tested with older adult populations or in nursing home settings. Still other hypotheses about direct intervention should arise from behavioral theory regarding the etiology and maintenance of depression. We have already discussed the hypothesis that sudden changes in a person's reward system may precipitate depression. Three older hypotheses further elaborate on the effects of reward in the etiology of depres- sion. Besides being precipitated by sudden changes, depres- sion may arise from (1) a reduction in the frequency of be- haviors that are positively reinforced by others, (2) rewards that are not contingent on behaviors, or (3) reinforcement Sot appropriate but too infrequent (Lewinsohn et al. 1976). The hypothesis that depressed individuals either engage in fewer behaviors or at least experience fewer positive reinforcements resulting from their behavior could help explain the greater frequency of depression in later life. There is some evidence that elderly people emit fewer behaviors that can be reinforced by others. Whatever the reason for this, alleviation of depression from this point of view would focus on offering rewards for increased positive interactions with the environment to increase the likelihood that positive reinforcements would be forthcoming. Thus behavior therapy would encourage increased positive inter- actions between the patient and the staff of the nursing home and family members. Staff members and relatives could be instructed how to encourage and reinforce behavior changes and the attempts of the older adult to modify the interpersonal interactions. An elderly person's behavior with relatives (and nursing home staff) may have become dependent and self-effacing as a result of the role reversal that often comes with increasing frailty in old age. This type of behavior usually does not result in positive rein- forcement from family members or staff. Interactions with family members and staff can be more rewarding if the older adults can modify their behaviors. Encouragement and reinforcement of behaviors designed to elicit positive reactions from relatives (such as expressions of appre- ciation, positive conversation during visits, etc.) can 117 enhance familial attachments and interpersonal rewards within the family system, ultimately reducing depressive symptoms and enhancing the patient's mental health. Similar modifications in behaviors could result in more positive reinforcements from staff members as well. As a theoretical alternative to the notion that older adults receive fewer positive reinforcements, Costello (1972) hypothesized that the key to depression in the elderly was not the loss of reinforcers, but the loss of their effec- tiveness. This too seems a reasonable explanation for increased depression in later life. Establishing effective reinforcers for modifying the behaviors of institutionalized elderly is a thorny problem for clinicians and researchers alike. If the reward system of the older adult is to be modi- fied and enhanced, the effectiveness of reinforcers is a key issue. Cautela and Kastenbaum (1969) and Cautela et al. (1972) have developed a reinforcement survey which lists several pages of items that the individual checks as being reinforcing or not. This survey has not been widely used, but it provides a start for efforts to determine the effec- tiveness of reinforcers. Yet another behavioral approach to depression is Beck's (1967; Beck et al. 1979) cognitive-behavioral theory that was developed specifically for depressive states. Cognitive- behavioral approaches differ from other behavioral methods in that they emphasize the patient's internal experiences rather than observable behavior only. Beck's theory uses three concepts to explain depression--the cognitive triad, schemas, and errors in information processing. The cog- nitive triad expresses how individuals perceive themselves, their present, and their future. Beck theorizes that symp- toms of depression spring from negative thought patterns that include inferences of worthlessness and the hopeless- ness of one's life situation. Schemas designate the cognitive manner in which an individual interprets life situations. These are developed out of past, and probably early, ex- periences. Finally, errors in information processing are thought processes that support negative (depressive) self- concepts. Intervention using Beck's framework focuses on modifying these cognitive processes and enhancing overt behavior toward greater social involvement and activity. Adding the cognitive dimension to other behavioral ap- proaches for intervention in depression enriches the pos- sibilities for effective work with older adults in the nursing home setting. This approach emphasizes the positive as- pects of behavior therapies in general--i.e., control of the therapeutic process by the client and greater activity of the 118 therapist. However, it too needs to be tested with elderly persons, especially those in nursing homes. The drawback may be its emphasis on cognitive processes, which we know decline in later life. Environmental Approaches Ultimately, in working with clients in a nursing home, the behavior therapist will likely realize that some be- havioral intervention with the environment would be helpful to support, enhance, and reinforce the behavioral changes attempted by the patient (Hoyer et al. 1975). Lindsley (1964) and Beyer and Nierstrasz (1967) have suggested the development of a "prosthetic" environment characterized by physical aids to increase mobility and prevent injury in- cluding fail-safe devices, response force amplifiers, multiple sensory-modality displays, etc. More recently, Patterson and Jackson (1980) suggested another model--a "thera- peutic" environment in which adaptive behaviors are established or restored by the systematic application of learning principles. Much research literature supports the importance of the environment in affecting the behavior of older adults. In fact, Hoyer (1973) perceives the interaction between the biologically maturing individual and the environment to be an important contributing factor to the aging process; thus intervention and modification of the environment could slow this decline and the onset of deficiencies. Moos (1973), re- flecting on the significance of environments in general, states that the most important task for the behavioral and social sciences may be to describe and classify environments in terms of their costs and benefits to the adaptation of those living therein. Environmental approaches are espe- cially important in the context of the total environments of nursing homes. In such an environment, when one agent makes a change, it is often necessary for many others within the setting to accommodate with complementary changes. Not only do nursing home staffs need to accommodate attempted changes in individual patients, but they may need to focus on ways to generally enhance the patients' mental health and make the environment less depressive. Since the staff is an integral part of whatever reward system exists, they need to be involved in any modification of that system toward optimizing and enhancing mental health. The prob- lem here is to determine what to modify and how to modify the environment. The variables that relate to mental health in total set- tings such as nursing homes have long been the focus of 119 attention by gerontologists. Some time ago, Kleemeier (1959) hypothesized three variables in total institutions that were likely to affect and shape behavior. Kahana (1971, 1980) and others (Lawton and Nahemow 1973; Lawton and Cohen 1974) have extended this work on person-environment fit exploring the problems of morale and mental health within restricted and other types of environments with the elderly. In a recent article, Parr (1980) proposed a four- component model of person-environment interactions which stressed the need for maintaining a focus on the interaction of the various components of the environment while one variable was under study. In other recent, more empirical work, Nehrke et al. (1981) developed a scale to assess the impact of institutional environments on the individual. This scale, the Environmen- tal Perception Preference and Importance Scale (EPPIS), includes 15 dimensions that appear relevant to morale and well-being within the nursing home setting. It includes di- mensions that emphasize the interpersonal as well as the physical environment, i.e., a focus on control, segregation, interpersonal contact between staff and residents as well as between residents, stimulation, tolerance for aberrant be- havior, etc. With scales such as the EPPIS, therapeutic intervention could be tailored to meet the specific mental health needs of various groups of institutionalized persons. Scales such as this could also help staffs identify needed modifications in their own behavior. Thus, behaviorists have addressed the "what" portion of the question of what and how to modify within the nursing home environment. Behavioral psychologists have also considered the question of "how" to go about modifying the nursing home environment. Most such efforts have taken the form of educational or attitude change programs. Many inservice training and formal educational programs are available for aides, attendants, and nurses, including programs designed to change staff attitudes toward the elderly within nursing homes. Cautela and Wisocki (1969) used a thought-shaping fantasy procedure over a period of 10 days to change atti- tudes. McReynolds and Coleman (1972) found that reporting to the staff about improvements in the behavior of elderly patients seemed to increase the staff's optimism for and interest in the residents. Hickey (1974) used intensive methods (role playing, films, and actual practice) over a 5-month period to change staff attitudes. Each of these studies proved effective in appropriately modifying staff attitudes in a positive direction. 120 The problem with these educational and attitude change programs is that researchers have not determined how they affect the behavior of staffs toward nursing home resi- dents. Does knowing more about aging or medical and nursing procedures for older adults and having a more positive attitude make a difference in the actual care that is offered? Do these programs for staffs positively affect the mental health of nursing home residents? The final evaluation of any training program for staff needs to determine whether it improves the actual behavior of the staff toward those for whom they care, thereby creating a more positive mental health environment. Of course, the motivation of the staff in a nursing home is important in determining whether any educational or other program is effective. Motivation may be intrinsic to individuals or arise in response to their environment. Nursing home staff not only help to create and perpetuate the total institutional setting, they are also molded and influenced by the structures within which they work (Haney et al. 1973). Different staff members may feel different pressures. Aides and attendants are usually regulated to a greater extent, while administrators can be more indepen- dent and have more options for making decisions and influ- encing behaviors. Thus staffs in nursing homes work within certain reward structures just as they create reward struc- tures for the residents there. These reward structures (perceived or real) may prevent the staff from making significant changes in their behavior that could make a dif- ference in the level of mental health among elderly resi- dents in the nursing home. Behavior modification programs may need to be developed in which staff morale and work behavior are modified to create a more positive setting for staff and residents alike. Aides and attendants could be re- warded for behaviors contributing to the mental health of the patients. This area has been totally neglected by be- havioral scientists, but is worthy of focus. Two Other Common Symptoms of the Elderly in Nursing Homes Besides depression, two other clinically significant be- haviors important to the mental health of nursing home resi- dents are control of anxiety and control of pain. We shall briefly survey the studies already carried out with respect to these two symptoms common among the elderly. The same issues outlined in our discussion of depression apply here. 121 Anxiety is manifested by any number of behaviors in the nursing home. Constant calling out, sleeplessness, excessive worry, attention-seeking, and excessive physical symptoms are some of its common manifestations. Two studies in the literature pertaining to the use of behavior therapy approaches with anxiety and pain symptoms in older adults involved staff input. In one study (Baltes and Las- comb 1975), the staff was taught how they perpetuated the excessive behavior they found so difficult to deal with in residents. Using behavioral procedures, they were then taught how to reinforce more positive behavior as well as how to get rid of the excessive behavior. In the other study of excessive pain complaints (Leven- dusky and Pankratz 1975), pain complaints were to be re- duced by establishing a reinforcement schedule together with a complementary program for substituting more posi- tive behavior (in this case, greater physical activity). This portion of the behavioral intervention was carried out with the full understanding and cooperation of the elderly patient involved. On the other hand, unbeknownst to the patient, a placebo was gradually introduced to take the place of the pain medication the patient had been taking. After the patient had established good control of his symptoms through relaxation and had become considerably more ac- tive, he was told that his pain medication had been reduced. He decided to discontinue all medication, making himself completely responsible for the control of his pain behavior. This patient's behavior was modified toward more positive interactions with the environment. Presumably, however, the behavioral changes also resulted in improved mental health of the patients involved in these studies. We now need studies from the perspective of the older patient's experience of anxiety or pain and interventions to reduce the patient's discomfort. An important aspect of be- havioral intervention in anxiety is the development of relax- ation responses to be used in stressful situations. We have alluded to the use of relaxation procedures previously as a means for producing relief among older adults (Richard et al. 1975). Modifications in the use of these procedures with older adults have been suggested in the Garfinkel (1979) study indicated above. As we saw, the older adult was treated successfully and with long-lasting effects. Another recent study by Weldon and Yesavage (1982) documented the use of relaxation and other behavioral therapies in a group of 25 senile dementia (Alzheimer's type or multi-infarct) patients. For 3 months the experimental 122 group was given three l-hour sessions per week of deep muscle relaxation training leading to self-hypnosis to induce a trancelike state. This group also practiced imagery and shifting body focus. The control subjects were given an equal number of sessions discussing current events. Two important results came from this study. One was that these patients were able to successfully learn the procedures taught although it took 3 months. The second finding was that the experimental group significantly improved in several "activities of daily living" including psychiatric symptoms, dressing, grooming, toileting, and eating (as rated by the Stockton Geriatric Scale) while the control group showed a slight decline in these same areas. Addi- tionally, one-third of the 24 patients in the experimental group no longer needed sleep medication as a result of being taught relaxation techniques. In this study, behavioral therapy approaches signifi- cantly improved the quality of life of patients with senile dementia, a group that seemed unlikely to benefit from any procedures. Application of relaxation procedures to this group of elderly with senile dementia has important im- plications for wider use of relaxation and other behavioral procedures in nursing home populations. It raises important questions concerning procedure, application, and mental health outcome. For example, what other groups of elderly can be taught the various behavioral procedures for relax- ation with a reasonable effort? What is a reasonable ef- fort? What between-session supports are needed from staff to teach these approaches successfully? Conclusions We have surveyed some of the issues facing researchers who would address themselves to the problems of mental health in the elderly in nursing homes. This review has focused on depression as an important problem in nursing home elderly and one representative of the many contri- butions behavioral scientists can make to enhance mental health. We also touched briefly on behavioral modification techniques for controlling anxiety and pain using relaxation and other techniques. We did not review the status of biofeedback research in nursing home elderly, of modeling procedures as an inter- ventional learning modality, or the status of research in pain control in the elderly. These latter are all important foci for research endeavors. However, much less research had 123 been done in these areas, and the same issues that we dis- cussed for depression are relevant to these other clinically significant symptoms. Our survey of the literature showed that very little mental health research has been done from the perspective of the older adults themselves. Obviously such research is needed. We would reemphasize the following research recom- mendations. 1. Research efforts should focus on the clinically sig- nificant behaviors (depression, anxiety, paranoia, excessive pain) in order to enhance the mental health of nursing home elderly in the immediate future; 2. Behavioral approaches (including behavior modifi- cation, cognitive-behavior therapy, biofeedback, and modeling) already have been found to be effec- tive in altering clinically significant symptom be- haviors among younger aged and should be applied to the mental health problems found in the nursing home setting; and 3. Behavioral approaches need to be used in working toward improving the nursing home environment for positive mental health. 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Behavior Therapy in Terminal Care. Cambridge, Mass.: Ballinger Publishing Co., 1982. Steuer, J. Psychotherapy for depressed elders. In: Blazer, D., ed. Depression in Late Life. New York: C.V. Mosby Co., 1982. Thorenson, C.E., and Mahoney, J.J. Behavioral Self Control. New York: Holt-Reinhart-Winston, 1974. Weldon, S., and Yesavage, J.A. Behavioral improvement with relaxation training in senile dementia. Clinical Gerontologist 1:45-50, 1982. 127 ws CHAPTER 10 POLYPHARMACY AND ALTERED PHARMACOKINETICS IN NURSING HOMES Darwin Zaske, Pharm.D. Professor, College of Pharmacy University of Minnesota Minneapolis, MN and Tracy S. Hunter, M.S. Assistant Professor, College of Pharmacy Howard University Washington, DC The inappropriate use of drugs by elderly persons is a significant social, economic, and medical concern. The scope and magnitude of pharmacotherapeutic issues are broad; the implications to the elderly in terms of quality of life and costs are major. Medical illness frequents the elderly, and pharmacologic intervention is often required. However, we presently know very little about drug response and the time course of drug disposition in elderly patients. This deficiency is of special concern in nursing home pa- tients, many of whom have multiple diseases and therapeu- tic dilemmas. The first step in addressing the problems associated with usage of drugs by the elderly is understanding the dif- ference in physiologic and pharmacologic processes associ- ated with aging and the heterogeneity of the elderly popu- lation. The importance of proper evaluation, diagnosis, selection of a specific pharmacotherapy, and continued patient assessment cannot be overemphasized. The follow- ing discussion will review the information available on pharmacotherapy in the elderly, as well as specific data regarding polypharmacy, altered pharmacologic response, pharmacokinetic changes, and directions for research. Polypharmacy Studies show that for the elderly, multiple drug ther- apy--or polypharmacy--is the rule rather than the excep- tion. One-third of the total 1.5 billion prescriptions written annually in this country are for the elderly. A 1976 survey of skilled nursing facilities found an average of six prescrip- tions per patient; another survey found a range of 0 to 23 drugs per resident (Lamy 1980). The number of additional over-the-counter drugs consumed is unknown. A survey of 1,276 elderly patients in Veterans' Adminis- tration hospitals with a primary diagnosis of mental illness found one out of every six patients received two or more psychoactive agents. The investigators also found that the use of polypharmacy was significantly related to patient age. One of every four patients age 60 to 65 were treated with drug combinations, compared to only one of every eight patients over age 75. In this study, polypharmacy was more prevalent with female patients, a finding that should be in- vestigated in other populations. Anti-Parkinson drugs were not considered in this analysis of psychoactive combinations, which partly accounts for the slightly lower incidence of combination therapy here than reported in other studies. Anti-Parkinson drugs are potent anticholinergics often as- sociated with significant side effects in the elderly. Since they are frequently prescribed with other psychoactive drugs, they should not be disregarded in future studies (Prien et al. 1976). Of specific interest are the types of drugs prescribed for the elderly and their relationship to cognitive deteri- oration and impairment from dementia in the elderly. A recent study by Seifert and associates (1983) reviewed the use of anticholinergics in confused nursing home patients. Their work revealed that anticholinergic drugs, including tricyclic antidepressants and antipsychotics, were frequent- ly prescribed for elderly patients with confusion and cogni- tive impairment. Side effects of these drugs could contrib- ute to such patients’ cognitive problems (Hall et al. 1981). Studies have found diuretics, psychotropics, digitalis, antihypertensives, analgesics, laxatives, and vitamins to be the most frequently prescribed drugs for the elderly (Williamson and Chopin 1980). Aging increases the proba- bility of developing various debilitating diseases; therefore, the statistic that 80 percent of the elderly have at least one chronic condition is not surprising. Thus, the elderly may require more medication because they have more acute and chronic diseases. But there is little or no information on effectiveness, compatibility, dose response, or toxicity for most combinations of drugs used. The therapeutic outcome of polypharmacy is not optimal and may in fact exaggerate underlying diseases or symptoms. 130 Consequences of Polypharmacy Increases in multiple drug usage increases the probabil- ity of drug-drug interactions. The frequency of clinically important interactions is difficult to estimate. Recent studies reviewing drug profiles of nursing home patients show the potential for significant reactions in up to 53 per- cent of the records reviewed (Brown et al. 1977). Few studies in this country investigating the incidence of adverse drug reactions in the elderly have specifically measured the impact of drug-drug interactions. Another potential consequence of drug combinations is drug-disease interactions. Because most drugs affect other organ systems in addition to those intended, a patient's other conditions or disease process can be, directly or indir- ectly, harmed or helped. Untreated disease conditions can be exacerbated by drug therapy or can alter the successful treatment of other conditions. Elderly patients, who com- monly have several chronic conditions, are therefore at a greater risk when taking drugs. Studies have shown that ad- verse drug reactions occur in 10 to 18 percent of all hospit- alized patients (Gardner and Cluff 1970) and account for 3 percent of all hospital admissions (Caranasos et al. 1974). The incidence of adverse reactions among ambulatory geri- atric and nursing home patients is unknown. These popula- tions need to be studied separately because the risks and problem recognition may be different. Although adverse reactions are sometimes difficult to identify in elderly patients, evidence suggests that the prob- ability of adverse drug reactions increases with age (Triggs and Nation 1975). Lamy states that patients between the ages of 60 and 70 experience adverse drug reactions at a rate twice that of patients ages 30 to 40 (1980). The defini- tion and recognition of adverse drug reactions in ambulatory and nursing home patients need further clarification. Compliance with Drug Therapy Advanced age itself does not seem to be a significant factor affecting the quality of patient compliance with a therapeutic regimen; however, several factors complicate the compliance problem in the elderly. These factors in- clude the nature of the illnesses being treated, the number of drugs prescribed and self-administered, the complexity of the regimens, the cost of medications, multiple pathologies, and memory or visual impairments. One of the common reasons that elderly persons are institutionalized is their in- ability to manage their medications. Yet compliance aids have been shown to benefit this population (Wandless and 131 Davie 1977). Unit-of-use multiple-drug packaging, tablet identification, and tear-off calendars are examples of com- pliance aids that could produce substantial cost savings by preventing the need for hospitalization or patient confine- ment to a nursing home. We emphasize that noncompliance with a therapeutic regiment at any level places elderly pa- tients at greater risk of therapeutic failure or adverse drug reactions. Physiologic Changes Various physiologic changes associated with the normal aging process have been documented. These can substanti- ally affect the pharmacokinetic characteristics of drugs prescribed to geriatric patients. The aging process affects the elderly population in a very heterogeneous manner. Factors involved in this process may be associated with age, but the data indicate that a large number of genetic and en- vironmental factors are more directly involved. Changes with age in drug absorption, distribution, ex- cretion, and metabolism have been observed with some drugs, but these relationships have not been demonstrated consistently. We summarize this information in table lI. A limited number of reports have found no change in drug dis- position in relationship to increasing age. Thus the effects of increasing age on drug disposition may be drug specific or even patient specific. Studies to date have not defined a consistent relation- ship between drug disposition and age. Moreover, many of the pharmacokinetic studies of the elderly may be flawed by patient selection bias. Almost all of the studies involved only a small number of elderly patients and involved pa- tients that were "in good health and demonstrated no evi- dence of cardiac, pulmonary, renal, or liver disease." These subjects are not necessarily representative of patients treated with therapeutic agents. Since physiologic changes that occur with aging are quite variable, the study patients may represent a select group that had minimal age-related physiologic changes. Consequently, their drug disposition characteristics may be similar to that of 40-year-old sub- jects. Furthermore, nursing home patients constitute a unique subgroup of elderly patients who have not been studied. The institutionalized elderly may have more dis- eases or more severe diseases than noninstitutionalized elderly and thus may demonstrate larger age-related changes in pharmacokinetic characteristics. Data from elderly nursing home patients could make important con- tributions in making optimal therapeutic decisions. 132 Table 1. Physiologic Changes Relevant to Drug Pharmacology in the Elderly Pharmacologic Age-related changes with Significant characteristic potential influence influence Absorption Decreased absorptive surface - Decreased splanchnic blood flow - Increased gastric pH + Altered gastrointestinal motility + Distribution Decreased lean body mass + Decreased total body water + Decreased serum albumin + Increased fat + Altered protein binding + Metabolism Decreased liver mass + Decreased liver blood flow + Decreased enzyme activity and inductibility + Excretion Decreased renal blood flow + Decreased glomerular filtration rate + Decreased tubular secretory function + Receptor Altered receptor number + sensitivity Altered receptor affinity + Altered second messenger function + Altered cellular responses + The pharmacokinetic data collected and reported thus far have substantial deficiencies. Many studies of the elderly have reported only the half-life of a drug and have no reported data describing the drug's distribution volume, clearance, and protein binding. Developing appropriate dos- age regimens requires more information than half-life data. The drug's distribution volume and clearance data are essen- tial factors for determining optimal dosage regimens. An- other issue is the pharmacokinetic/mathematical model used to fit serum concentration time data and also used to obtain 133 estimates of the drug's pharmacokinetic parameters. The current pharmacokinetic models and methods used to fit the concentration time data may be oversimplified and thus contain a substantial amount of error when used in estimat- ing pharmacokinetic parameters and anticipating dosage re- quirements. As previously stated, many physiologic changes that occur with the aging process are likely to affect drug dis- position. Changes of the gastrointestinal tract include changes in absorptive surface and in gastrointestinal motil- ity, decrease in blood flow, and an increase in gastric pH. The decrease in absorptive surface and in blood flow could negatively influence drug absorption. A decrease in gastro- intestinal motility could also decrease the rate of drug absorption and thus the amount absorbed. The increased gastric pH could result in either an increase or decrease in the amount of drug absorbed, depending on the drug's acid stability and ionization constant. For example, drugs that are acid labile, such as penicillins, could show an increased absorption. Drugs that are weak acids may demonstrate a decreased absorption. Currently, the literature contains very little data that indicate an actual change in drug ab- sorption with normal aging (Richey and Bender 1977; Castle- den et al. 1977). Agents that are actively absorbed, such as iron, appear to be less absorbed in the aged. Other agents either have not been studied or demonstrate no significant change. Changes in drug absorption in the elderly could be drug specific or even patient specific. Carefully designed studies are needed to determine if such changes actually occur in elderly patients. Age-related changes in body composition and circulat- ing proteins can alter the distribution characteristics of drugs. Lean body mass decreases and fat composition in- creases with age. The proportion of body weight comprised of water and fat shifts from a 25:10 percent ratio at age 20 to an 18:24 percent ratio at age 60. Thus, drugs that are water soluble demonstrate a decreased distribution volume with increasing age, while drugs that are lipid soluble show an increased distribution volume. Lithium is a good example of a drug that is highly water soluble and should demon- strate a decrease in distribution volume with increasing age. The benzodiazepine compounds are examples of agents that are fat soluble and demonstrate an increase in distribu- tion volume with increasing age. For example, one study showed that after the same intravenous dose of nitroazepam, the resultant serum concentrations were substantially lower 134 in elderly patients than in the younger patients because of the difference in distribution volume. The amount of circulating proteins also changes with age. Many proteins decrease with increasing age and the af- finity of the drug-protein interaction decreases. The num- ber of protein binding sites and the strength of drug-protein binding decrease with age. Consequently, the percentage of free drug (the portion related to pharmacologic response) in relationship to total drug increases with increasing age. In certain drugs, the free fraction may be increased many times, resulting in a heightened pharmacologic response. The tricyclic antidepressants demonstrate this phenomena. Their free concentration in 20-year-old patients is 9 per- cent, but in elderly patients with no disease, is 13 percent. Elderly patients demonstrate a higher incidence of side effects with certain drugs than younger patients; this may be explained by their higher level of free concentration. Thus, the enhanced pharmacologic response that occurs with increasing age may be partially due to a decrease in the protein binding. Liver function also demonstrates substantial age- related changes. For example, the number of hepatocytes, as measured by liver mass, decreases markedly with in- creasing age. Many psychotropics are detoxified by the liver, making this organ the primary route of drug removal. Generally, the liver mass in 60-year-old patients is 25 to 30 percent less than in 40-year-old patients. Cardiac output is reduced by 30 to 40 percent in elderly patients compared to those 40 years of age, resulting in decreased blood flow to the liver. Additionally, various enzymatic pathways of drug detoxification demonstrate decreased activity. Drugs, such as phenobarbital, that frequently induce metabolic enzymes in younger patients may not have the same propensity in elderly patients. Studies using antipyrine, a marker for dehydroxylating capacity of the liver, have shown metabolic rate decreases with increasing age. The relationship is statistically sig- nificant although individual variation is substantial. More- over, only 13 percent of the variation in metabolic clear- ance is explained by age. Consequently, drugs that are metabolized by the liver could demonstrate a decreased clearance for several reasons. This would be true for drugs that are flow-dependent or flow-independent agents. Ben- zodiazepine compounds have been studied extensively and demonstrate age-related changes in metabolism (Shades et al. 1981). These changes have been demonstrated not only 135 for the parent drug, but also for many of their active meta- bolites (Hoyumpa 1978; Breimer 1979; Reidenberg and Levy 19738). Renal function, as measured by glomerular filtration or by active secretion, decreases with increasing age. A de- crease in renal blood flow and decrease in kidney mass may explain this observed changed in function. Markers of glomerular filtration, such as creatinine clearance, decrease with increasing age. The relationship is statistically signi- ficant; however, a substantial amount of individual variation exists. Similarly, the rate of active drug secretion is in- versely related to age. Age-related changes in elimination for the psychotropic drugs can be exemplified by lithium. Lithium is nearly 100 percent eliminated by the kidney via glomerular filtration and demonstrates a substantial decrease in elimination with increased age. Its half-life in the elderly is almost double that in adolescent patients. Although many psychotropic drugs are detoxified by the liver via metabolism, the metabolite, whether active or in- active pharmacologically, is frequently eliminated by the kidney, either by filtration or active secretion. Age-related changes in renal function can affect the elimination rate of metabolites and may result in higher metabolite serum con- centrations. A drug metabolite may have pharmacologic activity that is similar to, or different from, the parent drug and may have a profound effect on the elderly patient. Elderly patients have been suspected of being more sensitive to pharmacologic agents. This increased sensi- tivity can partially be explained by changes in drug dis- position as we discussed previously. Drug responses in elderly patients may also be attributed to changes in patient sensitivity. With increasing age, there appears to be a de- crease in the number of receptors available for drug response, a decrease in receptor-drug affinity, altered neurotransmitter concentrations, and altered cellular responses. The decrease in activity of choline acetyltransferase and monamine oxidase in the central nervous system of elderly patients may be an important finding and may lead to an increased understanding of the altered sensitivity to pharmacologic agents having anticholinergic activitiy. The decrease in choline acetyltransferase decreases the amount of acetylcholine available in the central nervous system and presumably decreases cholinergic activity. Decreases in central nervous system cholinergic activity have been as- sociated with a higher frequency of mental confusion. The 136 frequent use of anticholinergic agents may further impair the cholinergic nervous system. According to some reports, as many as a third of all drugs used by the elderly have prominent anticholinergic activity. Thus, the use of drugs with anticholinergic activity in a patient population pre- disposed to increased sensitivity should be a research priority. In addition, elderly patients have changes in the mona- mine oxidase present in the central nervous system that result in altered amounts of dopamine and other neuro- transmitters for the autonomic nervous system. This de- crease in monamine oxidase may explain why elderly patients have a higher susceptibility and incidence of drug-induced Parkinsonism. Deficiencies of choline acetyl- transferase, acetylcholinesterase, and acetylcholine have been reportedly found in brains of patients with senile de- mentia (Johnson et al. 1981). Also the baroreceptor func- tion is altered with increasing age. Thus, whereas younger patients may only experience dizziness, elderly patients are more prone to fainting episodes or falls with serious conse- quences. The dose response relationships for several other pharmacologic groups also seem to be altered in the elderly. Since 1962, pharmaceutical companies have systemati- cally studied new drugs and provided the Food and Drug Administration (FDA) with safety and efficacy data before the drug is approved for general use. It is unfortunate that clinical trials of new agents have historically excluded elderly patients. Phase III drug trials frequently exclude patients 60 to 65 years of age or older. Presumably, the elderly are excluded because they might demonstrate varia- tion in pharmacologic or toxicologic response that the phar- maceutical company would have to explain to the FDA. Consequently, these agents are marketed with general FDA approval, but without any controlled clinical investigations in the geriatric population. One must recall that the elderly consume approximately 33 percent of all prescribed drugs. The dose response relationships that are generally conducted as part of clinical investigations should be extended to the elderly population as part of Phase III trials or as part of postmarketing Phase IV trials. Data from these trials would substantially improve our understanding of how these pharmacologic agents behave in the elderly population and elucidate any differences in drug disposition or phar- macologic response. 137 Conclusions In summary, there are many pharmacodynamic and pharmacokinetic changes in the elderly that explain some of the problems this population has with drugs. Elderly pa- tients have an increased propensity for polypharmacy because of the multitude and severity of their disease con- ditions. The behavior of drugs from a pharmacokinetic perspective and from a pharmacologic perspective is dif- ferent in these elderly patients. Additionally, there is little information regarding the pharmacokinetic behavior and pharmacologic response of agents already on the market as well as agents in FDA trials. Compounding the dilemma facing the medical practitioner, some illesses have symp- toms that are the same as the side effects of drugs used to treat the disease. Thus, monitoring these patients and evaluating pharmacotherapeutic outcomes is difficult. The age-related processes that occur in the elderly are not well understood. It is alarming that many of the fre- quently used agents and psychoactive combinations have not been systematically evaluated to determine their safety and efficacy in this patient population. Furthermore, we need to determine the dose response relationships in various subgroups of the elderly, such as those who are ambulatory or those who have more severe diseases and are institutionalized. The research needs related to pharmacotherapy in the elderly are as follows: l. Cross-sectional studies of the incidence of ad- verse drug reactions should be conducted in both ambulatory and nursing home patients. 2 Clinical pharmacologic research on drugs com- monly used by the elderly should include testing with geriatric patients and emphasize their dose response relationship to determine their safety and efficacy in this population. The FDA needs to ensure adequate trials and provide surveillance of new agents that will be frequently used by elderly patients. 3. Clinical pharmacokinetic studies need to be con- ducted in representative elderly treatment groups to define drug disposition characteristics and dosage requirements. 4. Epidemiologic factor analysis of pharmacokinetic variables affecting dosage requirements should be conducted with drugs commonly used by the elderly. 138 5. Physiologic modeling should be conducted to estimate dosage requirements and define phar- macokinetic parameters for the elderly. 6. Longitudinal studies should be conducted to in- vestigate age-related pharmacologic and phar- macokinetic changes. 7. Methods to positively affect prescribing practices need to be researched. 8. Further testing and development of compliance aids (for example, multiple-drug, unit-dose packaging) should be conducted. 9. Professional and public health deficiencies in patient education need to be identified and strategies to meet these needs designed and evaluated. References Breimer, D.D. Pharmacokinetics and metabolism of various benzodiazepines used as hypnotics. British Journal of Clinical Pharmacology 8:75-135, 1979. Brown, M.B.; Boosinger, J.K.; and Henderson, M. Drug-drug interactions among residents in homes for the elderly--A pilot study. Nursing Research 26:47-52, 1977. Caranasos, G.J.; Stewart, R.B.; and Cluff, L.E. Drug- induced illness leading to hospitalization. Journal of the American Medical Association 288:713-717, 1974. Castleden, C.M.; Volans, C.N.; and Raymond, K. The effect of aging on drug absorption from the gut. Age and Aging 6:138-143, 1977. Gardner, P., and Cluff, L.E. The epidemiology of adverse drug reactions: Preview and perspective. Johns Hopkins Medical Journal 126:77-87, 1970. Hall, R.; Feinsilver, D.; and Holt, R. Anticholinergic psycho- sis: differential diagnosis and management. Psychoso- matics 22:581-587, 1981. Hoyumpa, A.M. Disposition and elimination of minor tran- quilizers in the aged and in patients with liver disease. Southern Medical Journal 71:23-28, Aug. 1978. Johnson, A.; Hollister, L.; and Berger, P. The anticholinergic intoxication syndrome: Diagnosis and treatment. Journal of Clinical Psychiatry 4#2:313-317, 1981. Lamy, P.P. Prescribing for the Elderly. Littleton, Mass.: PSG Publishing, 1980. 139 Prien, R.F.; Klett, C.J.; and Caffey, E.M., Jr. Polypharmacy in the psychiatric treatment of elderly hospitalized pa- tients: A survey of 12 Veterans' Administration hospi- tals. Diseases of the Nervous System 11:333-336, June 1976. Reidenberg, M.M., and Levy, M. Relationship between diazepam dose, plasma level, age, and central nervous system depression. Clinical Pharmacology and Thera- peutics 23 (4): 371-374, 1978. Richey, D.P., and Bender, A.D. Pharmacokinetic conse- quences of aging. Annual Reviews of Pharmacology and Toxicology 17:49-65, 1977. Seifert, R.; Jameson, J.; and Gardner, R., Jr. Use of anti- cholinergics in the nursing home: An empirical study and review. Drug Intelligence and Clinical Pharmacy 17:470-473, June 1983. Shader, R.l.; Greenblatt, D.J.; and Ciraulo, D.A. Effect of age and sex on disposition of desmethyldiazepam formed from its precursor clorazepate. Psycho-pharmacology 75:193-197, 1981. Triggs, E.J., and Nation, R.L. Pharmacokinetics in the aged: A review. Journal of Pharmacokinetics and Biopharma- ceutics 3(6):387-419, 1975. Wandless, I., and Davie, J.W. Can drug compliance in the elderly be improved? British Medical Journal 1:359-361, 1977. Williamson, J., and Chopin, J.M. Adverse reactions to pre- scribed drugs in the elderly: A multicentre investigation. Age and Aging 9(2):B-80, 1980. 140 CHAPTER 11 HEALTH PROMOTION IN LONG-TERM CARE Meredith Minkler, Dr.P.H. Associate Professor and Chair Health Education Program School of Public Health University of California Berkeley, CA A cursory review of health promotion programs and lit- erature reveals an implicit and frequently explicit concern with the prevention of "premature aging." The youth bias often inherent in health promotion efforts is grounded in part in negative societal images of aging which have ham- pered program development for this age group and indeed often rendered the idea of health promotion for the elderly inimical (Minkler and Fullarton 1980). If health promotion has been viewed as a foreign con- cept in relation to the elderly generally, it has been virtu- ally ignored with respect to those who are institutionalized. Yet many elderly residents of nursing homes or long-term care facilities] could benefit dramatically from an ap- proach to care based on some of the basic tenets of health promotion. The reasons for incorporating a health promotion per- spective in long-term care are many and varied. From a demographic standpoint, while only 5 percent of the elderly are institutionalized at any given time, an estimated 25 per- cent of persons 65 and over can expect to spend some time in a long-term care facility prior to their deaths (Palmore 1976; Kastenbaum and Candy 1973). Moreover, the age group most likely to require institutionalization in long-term facilities--those age 75 and over--constitutes the fastest growing segment of the total elderly population; fully 45 percent of all persons age 65 and over will be above age 75 by the year 2000. Another reason for concern with health promotion and disease prevention in institutional settings is that most el- derly persons stay in these facilities for a long time. The lwhile the term long-term facility is considerably broader than the term nursing home, the two are used interchangeably in the literature and are so employed in this paper. 141 average length of stay is 2.6 years, with more than a quarter of all residents staying more than 3 years (NCHS 1977a). Given these statistics, it seems clear that the elderly should be helped to attain as much functional independence as possible, for as long as possible. Health promotion, health education, and self-care may play an important role in ef- forts to improve the quality of life of many institutionalized elderly persons. Having set forth my basic belief that health promotion has a potentially significant role to play in long-term care, let me add two important caveats. First, health promotion as traditionally defined carries its own set of biases, as- sumptions, and limitations. These must be carefully exam- ined and overcome if health promotion is to have maximum effectiveness in long-term care and other settings. The concept of health promotion, like that of health education and self-care, must be broadened to include a concern with diverse target groups and a focusing of attention on macro- as well as micro-level change. This is essential in order to truly increase the elderly individual's capacity for effective health-related decisionmaking and health-enhancing behavior. Second, focusing on health promotion in nursing homes is futile to the extent that nursing homes remain dependency-producing environments. Moreover, we must not allow the emphasis of health promotion programs in nursing homes to deflect attention from the more urgent need for major nursing home reform and for reforms in those institutional arrangements (e.g., Medicaid reimburse- ment for nursing home placement but not for home health care) which help foster inappropriate placements in nursing homes in lieu of more healthful, health-promoting alterna- tives. The need for expanding our vision of health promo- tion, facilitating major changes in the nursing home environ- ment, and providing more alternatives to nursing home placement will be examined here as critical components of and prerequisites to effective health promotion for the el- derly in long-term care settings. While this chapter will focus primarily on health pro- motion, two related concepts--health education and self-care--are also important to our discussion of the elderly in long-term care settings. Health education is defined as "any combination of learning experiences which facilitate voluntary individual, organizational, or community behavior conducive to health" (USDHHS 1980a, p. 1). Health educa- tion efforts aimed at the elderly in nursing homes should provide knowledge of the full range of options available to 142 them, as well as the opportunity to develop the skills and resources necessary to make informed decisions. Of at least equal importance, however, are health edu- cation efforts aimed at policymakers, facility staff, and residents' families--groups whose own attitudes and behav- iors heavily shape the learning experiences, options, and re- sources available to residents. The related concept of self-care involves enabling resi- dents to participate actively both in personal health main- tenance and health care behaviors and in decisionmaking related to such behaviors. As in the case of health care education, a prerequisite to effective self-care in the nurs- ing home environment involves changing the attitudes and behaviors of policymakers and health care providers so that they are conducive to increased resident participation in health care decisionmaking, the carrying out of prevention and treatment regimens, and overall efforts at improving the health and quality of life of the residents. Health Promotion Reexamined Recent attention to health promotion and disease pre- vention provides a sharp and welcome contrast to the tradi- tional "medical model" approach to health. Nevertheless, as noted earlier, before attempting to apply the concept of health promotion to long-term care of the elderly, we must critically reexamine its assumptions and limitations. First, health promotion programs for the elderly, as well as for other groups, tend to focus on isolated individuals as the ap- propriate target for behavior change efforts. By implicitly suggesting that health and disease are largely determined by individual behavior choices, these programs tend to deflect attention from the more basic socio-structural factors which heavily influence individual practices. The focus on individual responsibility for health is not accompanied by at- tention to individual response-ability--that is, the capacity to effectively respond to one's personal needs and the chal- lenges posed by the environment (Minkler 1983). For the elderly in nursing homes, response-ability may involve such diverse issues as the acquisition of skills in self-management of a chronic illness, involvement in a sup- portive network conducive to health maintenance and health promotion, access to a residents' council, and an overall en- vironment committed to encouraging and enabling residents to engage in personal decisionmaking to the maximum ex- tent possible. 143 Health promotion programs for the elderly which focus on lifestyle choices in such areas as diet, exercise, and stress management assume a level of response-ability that our society effectively denies many elderly persons and cer- tainly those in nursing homes. By ignoring the social con- text within which health-related decisions are made, such programs fail to confront the root causes of the problems they seek to address. They further may inadvertently blame the victims by operating as though individuals are personally responsible for their health problems, which in reality often are caused, or exacerbated, by forces over which individuals may have little control. A second major limitation of conventional health pro- motion programs and approaches lies in their tendency to narrowly define their target groups. By focusing dispropor- tionately on the individual elderly person as the target of educational programs, for example, health promotion efforts for older Americans have tended to ignore the critical role that policymakers, care providers, the media, and other seg- ments of society can play in helping to create health- promoting environments. For health promotion to be effec- tive in long-term care settings, it must focus well beyond the individual residents themselves. While we could cite many examples, we will illustrate the point by looking at policymakers and health care providers. Policymakers. For close to two decades, Medicare and Medicaid have constituted the Nation's largest health care reimbursement system. The focus of both programs has remained steadfastly on disease, rather than health, and on acute, institution-based care, rather than on prevention and community-based alternatives to institutionalization. Until policymakers can be convinced to shift gears so that programs adequately reimburse for preventive and community-based health and social services, such services are unlikely to receive the attention and support necessary to be effectively implemented. Health care providers. Effective health promotion for the elderly in the community and in long-term care set- tings is not likely to take place without substantial change in the attitudes, interest, and knowledge of care providers working with older persons. A focus on the elderly should be prominently included in the education of physicians, den- tists, pharmacists, nurses, and other health professionals. Health care providers should embrace the goal of reduc- ing functional dependency in the aged and should, as part of their training, become acquainted with the various 144 community and other social supports which might be called upon to help meet that goal. As noted earlier, a third major limitation of conven- tional health promotion practice is its youth bias. In the words of Dr. Donald Iverson, director of health promotion/ disease prevention at Mercy Medical Center in Denver, CO, and former Senior Assistant to the Deputy Assistant Secre- tary for Health, the elderly have "simply been forgotten" as a target of public and private sector health promotion pro- grams. "All too frequently," he states, "the goal of these programs is to reduce the overall risk of individuals to pre- mature death. This goal tends to exclude the elderly whose risks of premature death are less than those of individuals who are in the 35-55 age range" (personal communication, Sept. 2, 1982). By focusing narrowly on primary prevention and the avoidance of "premature aging" and premature death, many current health promotion programs not only fail to address the needs of the elderly but also unwittingly may contribute to gerontophobia (Fischer 1978), the cultural dread of aging so pervasive in our society. For health promotion to be meaningful in long-term care settings, it must have far broader program goals and emphases. Primary attention should be given to the earlier mentioned goal of increasing autonomy and decreasing functional dependence of the elderly. Broad-based public education geared at correcting stereotypes and decreasing gerontophobia should also be an important component of health promotion efforts. Thus the limitations of many current health promotion programs go beyond their failure to include the elderly as a serious focus of attention. A broader definition of health promotion is needed to over- come these more basic problems. Such a broadening of focus is encompassed in the defi- nition by Green et al. (1980) of health promotion as "any combination of health education and related organizational political and economic interventions designed to facilitate behavioral and environmental changes conducive to health." This definition, emphasizing a variety of interventions de- signed to encourage both behavioral and environmental changes conducive to health, contains an implicit awareness of the numerous social, cultural, economic, and other fac- tors which influence health and health behavior. The "system-centered education" which this approach espouses aims at altering the social or cultural structure of a com- munity "in such a way as to provide better conditions, op- portunities, supports, and incentives for improving the health of individuals in the community" (USDHHS 1980b). 145 Where that community is a nursing home, such system- centered education might involve the following: # The education of staff and family members of residents in the importance of fostering resident autonomy, including concrete methods of encour- aging the residents' increased self-reliance; » Increasing the problemsolving capacity of resi- dents, as individuals and as a group, through the promotion of residents' councils as legitimate and important aspects of the total care environment; and ° Providing health education and opportunities for self-care, including access to the knowledge, skills, and supportive resources which may help make self-care a realistic option. By focusing on the broader system as the target of change efforts, health promotion is more likely to be both effective and ethically sound (Minkler and Fullarton 1980). Indeed, this broader approach to health promotion has im- portant potential for improving the health and quality of life of the elderly in long-term care. Prerequisites and Approaches to Effective Health Promotion in Nursing Homes As noted earlier, focusing on health promotion in long- term care settings is futile unless we can alter both (1) those institutional arrangements with prevent the effective development and use of alternatives to nursing home place- ment, and (2) the dependency-producing nature of most nursing home settings. The critical need for finding--and funding--alternatives to institutional-based long-term care for the estimated 40 percent of nursing home residents who would be better served in a less intense care environment (Butler 1978) has been widely discussed in the literature (cf. Minkler and Blum 1982; Kane and Kane 1980; HCFA 1983). Without reviewing that discussion here, recall that while an estimated 40 per- cent of State Medicaid money is expended on nursing home care, most States spend only 0.1 to .5 percent of their Medi- caid funds on home health services (GAO 1982). Similarly, only about 2.5 percent of the Federal Medicare budget is spent on home health care (Ferry et al. 1980). While nursing homes constitute an important and neces- sary care option for many frail elderly persons, they tend to decrease individual autonomy and the possibility of personal 146 decisionmaking. As such, they are not the environment of choice for those frail elderly for whom a comprehensive array of community and home-based health and social serv- ices could make life outside the nursing home a realistic option. The most important health-promotion step for the elderly therefore might involve changing Medicare and Med- icaid reimbursement regulations so that home health care and community-based care options become viable alterna- tives to nursing home care. The target of such a health pro- motion campaign would be the Nation's policymakers, rather than the elderly themselves or even the Nation's nursing homes. For those elderly persons for whom nursing homes do represent an appropriate placement, the concepts of health promotion, health education, and self-care must be changed if they are to be workable and realistic. The remainder of this paper will focus on barriers to effective implementation of health promotion in the "total care" environment of the nursing home. Health Promotion and ‘Total Care A major barrier to effective health promotion in long- term care settings is the medical-institutional model through which such care is provided. With its emphasis on professional care, generally at the expense of individual autonomy, the institutional environment is a particularly unfavorable one for approaches stressing individual responsi- bility and participation in health and medical care regimens. Bane and Ziegler (1980) have noted the considerable tension which exists when health promotion and self- development techniques are attempted in environmental settings which are problem-oriented and designed to provide "total care." Commenting on one such attempted applica- tion in a Midwestern nursing home program, ROSE (Realiz- ing Opportunities for Self-Exploration), they (Bane & Ziegler 1980) pointed out that: The program attempted to foster self-care, self- responsibilty, and self-determination. The nursing home environments were organized to help resi- dents adapt to decline and loss, and to "take care" of their residents. The resulting tension affected the program participants and the nursing home staff. Efforts to reduce costs and increase efficiency in nurs- ing homes have been a factor in abuses, such as the heavy 147 overmedicating of patients, which have been the subject of numerous Government hearings and investigations over the last decade (cf. U.S. Congress 1975). Many of these abuses also render patients more dependent and functionally im- paired than they might otherwise be. Meaningful efforts to prevent disease and promote health in nursing home set- tings, then, must necessarily involve a major rehauling of the system. Ideally, health promotion efforts directed at long-term care residents must begin before the move to a nursing home. Educational programs, visits to the facility, counsel- ing, and participation in the admissions process all may help prepare elderly persons for the move to an institutional en- vironment. Studies of such preparation efforts have shown them to have significant positive effects on the subsequent health and well-being of elderly nursing home residents. A major study by the National Institute on Aging (1979), for example, found that patients who felt more in control over their move to a nursing home demonstrated increased activ- ity levels after the move, and also reported improved physi- cal and emotional well-being. Their self-evaluations corres- ponded to nurses' ratings of the group. Perceived sense of responsibility and control appear to be a major determinant of health and well-being throughout the institutionalization experience. Langer and Rodwin (1976) compared the morbidity and mortality outcomes for two matched groups of nursing home residents, one a "responsibility-enhanced" group and the other a control group. Results of this study showed significant increases in activity level among the responsibility-enhanced group with- in weeks after they were given a plant to care for and were encouraged to participate more actively in personal care and decisionmaking. Even more dramatic was the finding that 18 months later the responsibility-enhanced group had a mortality rate only half that of the control group. These in- vestigators concluded that many so-called aging problems may in fact be related to an environmentally induced loss of control. Responsibility-enhancing environments may be achieved in many ways. Institutionalized persons should be en- couraged to play as active a role as possible in decision- making with respect to their daily activities and care. The elderly person who is encouraged to make decisions on even such minor matters as what clothes to wear is likely to ex- perience a heightened sense of participation and control in other areas as well. 148 Programs which stress physical, occupational, and other forms of rehabilitation may also help residents regain a sense of control and mastery over their lives. Yet time and cost considerations, as well as misconceptions concerning what skills and competencies nursing home residents can and cannot be expected to regain, often limit the amount of en- ergy put into rehabilitation efforts. For example, U.S. nurs- ing homes generally provide custodial care to patients who become incontinent, rather than offer training that might help them regain continence. Such training is widely and successfully used in hospitals and nursing homes in Great Britain. The 1974-1976 National Nursing Home Survey (NCHS 1977b) revealed that 31 percent of U.S. nursing homes pro- vided no rehabilitation programs, and only 25 percent pro- vided three or more such programs. Equally disconcerting was the fact that few residents participated in these pro- grams even when they were available. A greater emphasis on rehabilitation and on patient education and motivation for participation in such programs seems critical if in- creased functional autonomy is to be achieved. The development (or expansion) of residents' councils in nursing homes provides a special opportunity for patients to participate in decisionmaking concerning, for example, the types of available activities. Such councils and other ef- forts to actively involve residents in decisionmaking are crucial to health promotion in the institutional setting. Opportunities for disease prevention and health pro- motion in nursing homes are numerous. Following a few examples of areas in which interventions are needed to pre- vent disease and promote health among the institutionalized elderly. Nutrition Good nutrition is a fundamental prerequisite for disease prevention and health promotion among the elderly. Yet within nursing homes, problems of malnutrition, anemia, vi- tamin C deficiency, and low protein (hypoproteinemia) are not uncommon. Such problems stem from a host of factors, including administrative attempts to cut food costs (often resulting in inadequate, high carbohydrate diets), lack of in- terest in food among residents, dental problems, and prob- lems of nutrient metabolism and absorption. Encouraging ambulatory patients to eat together in din- ing facilities may boost patients' appetites by overcoming social isolation. Yet, as Butler (1975) has noted, helping physically impaired residents get to a common dining room 149 is generally more costly than leaving a food tray in each room; hence, such steps often are not taken. Nursing home meal schedules, which often are com- pressed into 7 or & hours, should be reconsidered from a health promotion standpoint. Residents used to having din- ner at 6 p.m. may not want to eat when confronted with a last meal of the day served late in the afternoon in order to cut personnel costs. Efforts to provide meals on a sched- ule more in keeping with normal meal times should improve the nutritional status of such patients. For members of ethnic minority groups, the diet may be dramatically different from their normal diet, again causing a waning interest in meals. Where possible, ethnic dishes should be supplied for residents who desire them, in recog- nition of the cultural and social, as well as the nutritional, importance of food. For example, a nursing home for the Blackfoot Tribe in Montana regularly provides standard trib- al dishes, as well as special ceremonial meals, with residents and their community-based families often participating in meal preparation. Meals in this nursing home continue to be associated with cultural rituals and traditions, helping resi- dents to continue to feel connected with tribal life. Poor dental health, overmedication, and mental health problems are among the numerous other factors that may negatively affect the nutritional habits of nursing home residents. Insufficient time allotted for patients to feed themselves and the general lack of incentives for such self- help may further contribute to forced dependency, often resulting in depression that may cause further loss of appe- tite. Hence, efforts to improve the nutritional well-being of the institutionalized elderly must be multidimensional, focusing on residents, their families, facility staff, policy- makers, and enforcement agencies, each of whom has an im- portant role to play in making meals more accessible, enjoy- able, and nutritionally sound. Drug Use and Abuse Surveys of skilled nursing facilities in the United States have revealed an average of more than six prescriptions per patient; 15 percent of residents in one study had 10 or more prescriptions (USDHEW 1977). More than half of the pa- tients had prescriptions for tranquilizers or sedatives, most of which were extremely potent psychoactive drugs such as chlorpromazine hydrochloride (Thorazine) or Thioridazine (Mellaril). Such drugs have serious and often irreversible side effects and are medically appropriate for only a small fraction of the nursing home patients receiving them. 150 Misuse of drugs in nursing homes is further exacerbated by the tendency for prescriptions to be written "prn" or "as necessary." The result is that nurses and aides administer- ing these medications often overmedicate patients. Parti- cularly when nursing homes are understaffed, sedating an "anxious" patient may be easier than rendering more basic care. Indeed, as Vladeck (1980) has noted, "The use of drugs in nursing homes is clearly more responsive to the economic and administrative needs of the facility than to the medical needs of its residents" (p. 18). Overmedication is a major contributor to deteriorating mental health, reversible and irreversible "senility," and physical declines and decreased activity level among nursing home patients. A major prerequisite to both disease preven- tion and health promotion among the institutionalized elder- ly, therefore, is more responsible and carefully monitored use of drugs. The usefulness of a simple medication profile in moni- toring the drug-prescribing habits of physicians in a long- term care facility was recently demonstrated in conjunction with the use of a comprehensive medical record system (Anderson et al. 1980). The medication profile (recording of all medications) may alert the staff or other physicians to suspect possible harmful drug interactions. It provides a simple, but effective, review that encourages minimal use of drug therapy in long-term patients. A different approach to the problem of overmedication is the Self-Actualization and Growth Explorations (SAGE) program, which has been adopted for use in nursing homes. This program has demonstrated the usefulness of alternative therapies such as meditation, relaxation, and counseling in alleviating problems of insomnia, anxiety, and related condi- tions (Pilisuk and Minkler 1980). While understaffed nursing homes are unlikely to seriously consider such alternatives, teaching such techniques to staff, as well as more careful monitoring of drug use, represents a potentially important health promotion effort in nursing homes. The curbing of drug misuse may also be facilitated by nursing home ombudsmen and family members, who should be alerted to signs of overmedication and drug interaction. By providing an additional check .on inappropriate prescrip- tion or administration of drugs, such concerned outsiders can help focus attention on drug misuse and secure help in halting the overmedication of residents. Real breakthroughs in the prevention of drug misuse among the institutionalized elderly cannot take place except as part of a major nursing home reform effort. We hope the 151 continued and heightened focusing of public and Government attention on abuses within the Nation's nursing homes will lead to successful attacks on the more fundamental prob- lem, of which overmedication of patients is simply a symptom. Mental Health Psychiatric problems constitute the primary diagnosis for 25 percent of all nursing home residents, with an esti- mated 63 percent of all residents reportedly suffering from some degree of senility (NIA 1979). Fully 80 percent of the elderly in nursing homes have a significant mental health problem, with depression constituting the most prevalent condition. Among nursing home residents who had been re- ceiving care from family members or friends prior to their admission, increasing mental disorientation is a primary rea- son for institutional placement. Mental health problems appear to tax the support systems of the elderly in the com- munity far more than do problems of physical impairment, and often result in a nursing home placement. The need for adequate and prompt diagnosis of the mental health problems of older persons is suggested in the high rates of misdiagnosis observed. Such misdiagnosis of- ten results in inappropriate nursing home placements and in drug and other treatments which may exacerbate existing conditions. As Vladeck (1980) has noted, increasing age does lead to irreversible loss of mental capacity characterized by disorientation, confusion, and loss of short-term memory in some individuals. However-- There is no question that many far less serious and much more easily reversible physical and emotional symptoms that affect the elderly are often mistaken for senility. All too often, inade- quate or mistaken responses to those symptoms lead to further deterioration which does become permanent (p. 15). (Emphasis added.) Careful preadmission screening of patients with a pri- mary diagnosis of senility may reveal disorientation and confusion to be the major presenting symptom of a myo- cardial infarction or other physical health problem. Prompt and appropriate treatment of the underlying disease may re- sult in a reversal of the "senility" observed, such that insti- tutionalization may not be required. Since an estimated 25 percent of all "senility" is (or was, at some earlier point) reversible (Eisdorfer and Cohen 1982), the importance of ac- curate diagnosis and treatment is clear. 152 As noted earlier, overmedication of nursing home pa- tients, particularly with potent psychoactive drugs, is a major contributor to patients' deteriorating mental health. Also significant are the effects of relocation, when physi- cally ill or mentally confused patients are moved from one institutional environment to another. Individualized prepar- ation, premove orientation to the new setting, and partici- pation in the decisionmaking process may reduce or prevent harmful physical and mental health effects of such reloca- tions (Schultz and Brenner 1977). As noted earlier, the dependency-producing nature of most nursing homes is itself antithetical to the maintenance and promotion of mental health. Thus, short-term memory loss and disorientation may be associated in part with fail- ure to keep track of daily events in an environment when there is no incentive to do so. Research has demonstrated that nursing home patients who are rewarded (e.g., through verbal reinforcement) for responding to questions requiring short-term memory show significant memory improvement when compared with those not so reinforced (Langer 1981). The importance of creating environments in which staff, families, and other persons in contact with residents are trained and encouraged to pro- vide motivation for improvements in memory and other cog- nitive functioning is critical to the promotion of mental health among the institutionalized elderly. Personnel An estimated 90 percent of the care administered in long-term care facilities is provided by untrained aides and orderlies (Vladeck 1980). For these individuals, low pay, lack of job satisfaction, and lack of opportunity for career advancement are among the factors contributing to a 75 percent turnover rate annually. Recruitment of physicians and nurses to work for long- term care settings is an even more difficult task. Thus, only about 56,000 registered nurses, or less than 7 percent of those currently active in the United States, work in such facilities (Vladeck 1980). Efforts to create career ladders for aides, as well as efforts to increase the level of prestige, job satisfaction, and pay for all categories of nursing home personnel, are necessary both to reduce the high turnover rates and other- wise improve the manpower situation in these facilities. Only when adequate staffing is achieved can we expect to see policies and approaches conducive to effective health 153 promotion for the elderly in institutional settings taken seriously. Summary and Conclusions The approach to health promotion in long-term care facilities suggested in this paper involves not so much the implementation of concrete programs as the creation of an environment in which decreasing functional dependence and maintaining autonomy can become a reality for patients. Within an environment, the "response-ability" of the institu- tionalized elderly would be heightened, as would the ability of nursing homes to respond to the diverse and changing needs of residents. The creation of an environment, however, requires fundamental nursing home reform. For health promotion, health education, and self-care to be effective, a major at- titudinal shift must take place--from an emphasis on patient management and control in order to meet institutional needs to an emphasis on enhancement of residents' lives in order to meet, first and foremost, the needs of residents. Where the needs of patients are subjugated to the needs of the in- stitution for reasons of economy and efficiency, an environ- ment conducive to health promotion cannot be created or sustained. Specific reforms necessary for effective health promo- tion in nursing homes include, but are not limited to, vastly improved staffing patterns, a heavy emphasis on rehabilita- tion, adequate preparation of residents prior to relocating them, and a serious and continuing commitment to resident involvement in decisionmaking and self-care to the maxi- mum extent possible. The curbing of overmedication of pa- tients and efforts to better meet the nutritional needs of residents—through flexible meal hours, increased foods choices, and the encouragement of self-feeding in group set- tings--are also necessary if we are to truly foster health promotion in the Nation's nursing homes. The institutional long-term care environment must not be the only--nor even the primary--focus of health promo- tion efforts designed to improve the health and quality of life of the frail elderly. Rather, Federal policymakers, must be the focus of educational efforts aimed at changing exist- ing regulations whereby reimbursement is available for nurs- ing home care, but not for home health care and other community-based care. Health promotion efforts affecting long-term patients must be concerned with changes in the 154 broader social and environmental contexts within which health-related decisions are made. Health promotion, viewed from this broader perspective, emphasizes a variety of interventions on multiple levels designed to encourage behavioral and environmental changes conducive to health. Within this context, health promotion has a critical role to play in the arena of long-term care of the elderly. References Anderson, D.L.; Backiel, M.; and Bird, K.T. "The Medication Profile of the Elderly Hospitalized Patient." Paper pre- sented at the 33rd Annual Meeting of the American Ger- ontological Society, San Diego, Calif., Nov. 21, 1980. Bane, M.S., and Ziegler, J.E. "Roses Also Have Thorns: Benefits and Problems in a Self Development Program for the Elderly." Paper presented at the 33rd Annual Meeting of the American Gerontological Society, San Diego, Calif., Nov. 22, 1980. Butler, P.A. Financing noninstitutional long term care serv- ices for the elderly and chronically ill: Alternatives to nursing homes. Clearinghouse Review 13(5):335-376, 1978. Butler, R. Why Survive? Being Old in America. New York: Harper and Row, 1975. Eisdorfer, C., and Cohen, D. Mental Health Care of the Aging. New York: Springer, 1982. Ferry, T.P., et al. Physicians' charges under Medicare: Assignment rates and beneficiary liability. Health Care Financing Review 1(3):49-74, 1980. Fischer, D.H. Growing Old in America. New York: Oxford University Press, 1978. General Accounting Office. Preliminary Findings on Patient Characteristics and State Medicaid Expenditures for Nursing Home Care. GAO/IPE 82-4. Washington, D.C.: U.S. General Accounting Office, July 15, 1982. Green, L.W., et al. Health Education Planning: A Diagnos- tic Approach. Palo Alto, Calif.: Mayfield Publishing Co., 1980. Health Care Financing Administration. The alternatives question, by Palmer, H.C. In: Vogel, R.J., and Palmer, H.C., eds. Long Term Care: Perspectives from Research and Demonstrations. Washington, D.C., U.S. Department of Health and Human Services. Washington, D.C.: U.S. Govt. Print. Off., 1983. 155 Kane, R.L., and Kane, R.A. Alternatives to institutional care of the elderly: Beyond the dichotomy. Gerontologist 20(3):249-259, 1980. Kastenbaum, R., and Candy, S. The four per cent fallacy. Aging and Human Development 4:15-21, 1973. Langer, E., and Rodwin, J. The effects of choice and en- hanced personal responsibility for the aged: A field ex- periment in an institutional setting. Journal of Personal- ity and Social Psychology 34(2):191-198, 1976. Langer, E. Old Age: An Artifact? In: McGaugh, J., and Kiester, S.B., eds. Aging: Biology and Behavior. New York, N.Y.: Academic Press, 1981, pp. 255-281. Minkler, M. Health promotion and elders: A critique. Gen- erations, Spring 1983, pp. 13-16. Minkler, M., and Blum, S.R. Community Based Home Health and Social Services for California's Elderly: Present Con- straints and Future Alternatives. California Policy Semi- nar Monograph, No. 13. Berkeley: University of California Institute for Governmental Studies, 1982. Minkler, M., and Fullarton, J. "Health Promotion, Health Maintenance, and Disease Prevention for the Elderly." Unpublished background paper for the 1981 White House Conference on Aging, prepared for the Office of Health Information, Health Promotion, Physical Fitness, and Sports Medicine, Department of Health and Human Serv- ices. Washingtion, D.C.: USPHS, 1980. National Center for Health Statistics. Nursing Homes in the U.S. 1972-1974, National Nursing Home Survey. Vital and Health Statistics, Series 14, No. 17. DHEW Pub. No. (HRA) 78-1812. Washington, D.C.: U.S. Govt. Print. Off., 1977h. National Center for Health Statistics. Characteristics, Soc- ial Contacts and Activities of Nursing Home Residents, by Zapello, A. Vital and Health Statistics, Series 13, No. 27. Washington, D.C.: U.S. Govt. Print. Off., 1977a. National Institute on Aging. Special Report on Aging. Pub. No. 79-1907, Rockville, Md.: National Institutes of Health, 1979. Palmore, E. Total Chances of Institutionalization Among the Aged, Gerontologist 16:504-507, 1976. Pilisuk, M., and Minkler, M. Social Networks: Life ties for the elderly. Journal of Social Issues 36(2):95-116, 1980. Schultz, R., and Brenner, G. Relocation of the aged: A re- view and theoretical analysis. Journal of Gerontology 32:323-333, 1977. 156 U.S. Congress. Senate Special Committee on Aging. Nursing Home Care in the United States: Failure in Pub- lic Policy. Washington, D.C.: U.S. Govt. Print. Off., 1975. U.S. Department of Health and Human Services, Public Health Service. Office of Health Information, Health Promotion, Physical Fitness, and Sports Medicine. To- ward a Health Community: Organizing Events for Com- munity Health Promotion. Pub. No. DHHS (PHS) 80-50113. Washington, D.C.: U.S. Govt. Print. Off., 1980a. U.S. Department of Health and Human Services. Public Health Service. Promoting Health/Preventing Disease: Objectives for the Nation. Washington, D.C.: U.S. Govt. Print. Off., 1980b. U.S. Department of Health, Education and Welfare. Public Health Service. Physicians' Drug Prescribing Patterns in Skilled Nursing Care Facilities. Long-Term Care Facility Improvement Campaign, Monograph No. 2. Washington, D.C.: U.S. Govt. Print. Off., 1976. Vladeck, B. Unloving Care: The Nursing Home Tragedy. New York: Basic Books, 1980. 157 CHAPTER 12 THE ROLE OF THE FAMILY IN NURSING HOMES: IMPLICATIONS FOR RESEARCH AND PUBLIC POLICY Elaine M. Brody, M.S.W. Director, Department of Human Services and Senior Researcher, Philadelphia Geriatric Center Philadelphia, PA Long-stay residents of nursing homes--those who will remain in the nursing home for the rest of their lives-- constitute only one category of nursing home patient. Many other patients are admitted for relatively short stays--i.e., those who are admitted for rehabilitation or convalescence who will subsequently return to community living arrange- ments, and those who are admitted for terminal care. The role of a resident's family differs somewhat according to the different needs and goals of care for the particular category of patient under consideration. This chapter fo- cuses on the role of the family when an elderly family mem- ber is a long-stay resident of a nursing home or similar institution. Approximately 5 percent of all older people are in nursing homes at any one time; about one-third have been there for less than a year, one-third for 1 to 3 years, and one-third for 3 years or more (NCHS 1978). But in the course of a year, about 9 percent of older people spend some time in a nursing home. Moreover, 23 percent to 38 percent of people 65 years or over will spend some time in a nursing home before they die (HCFA 1982). Discharge data also provide some information about the flow of older people in and out of nursing homes. In 1976, about 600,000 people age 65 or over were discharged from nursing homes; one-third of them went to community residences and two thirds to another health facility such as a hospital (44.7 percent) or another nursing home (13.3 percent) (U.S. Bureau of the Census 1978). The overall picture, then, is one of considerable movement of older people, who not only move back and forth between community and hospital, but who are cir- culated among institutions of various types. Thus they move from hospital to nursing home, from nursing home to hos- pital, and from nursing home to nursing home. The long- stay resident may become an acute care patient, then a rehabilitation patient, once again a long-stay patient, and so on--often many times before becoming a terminal patient 159 who may die in the nursing home or be moved to a hospital to die. We emphasize this constant movement because it has major implications not only for the repeatedly relocated older people but for their families as well. Families need support where they are subjected to the attendant dis- ruption, disorganization, frustration, and emotional strains that compound their concern and upset about the elderly patient. It is against that background that the family's role is enacted when an elderly family member is in a nursing home. In exploring the role of families of nursing home resi- dents, it is useful to examine the role of families in relation to the noninstitutionalized aged as well. Few subjects are more controversial than what the role of the family should be in caring for the chronically impaired aged. Everyone is an expert on what families should do and when (or whether) nursing home placement should take place. Each of us brings our own values, family styles, opinions, biases, and personal experience to this issue. Political ideologies and economic considerations often shape the "official" Govern- ment stance, which in turn determines policies about the kinds of services and supports that are made available and reimbursed. At present, for example, we hear a call for a return to "family responsibility," which invokes as its rationale the myth that families nowadays do not take care of their elderly as they did in the "good old days." The implication is that services from the formal support system . supplant family services, a notion that is resulting in cut- backs in public services for the elderly and a move to en- courage States to compel adult children to provide financial support for their elderly parents in nursing homes. As every gerontologist is aware, the myth of family alienation persists stubbornly despite the large and consist- ent body of research that firmly documents the ongoing commitment and responsible behavior of most families. (For reviews, see Brody 1978; Tobin and Kulys 1980; and HCFA 1983). Biases and myths notwithstanding, the roles played by family members in caring for the noninstitu- tionalized aged have been identified as follows: ° Family members are the principal sources of emo- tional support and socialization for the impaired aged. ® Family members are the dependable "others" for the dependent elderly, responding reliably in emergencies and at other times of need. ° Family members mobilize and coordinate services from other sources; they act as advocates and as 160 mediators with the "formal" support systems (that is, Government and social service agencies). ° Family members are the principal providers of long-term social/health care; the amount of "informal" support services they provide dwarfs that provided by the "formal" system. They pro- vide 80 to 90 percent of personal care, medically related care, and instrumental service such as household maintenance, shopping, and transpor- tation for elderly family members. ° Family members often share their homes with elderly relatives who can no longer live independ- ently. Twice as many seriously impaired elderly live with families as live in institutions. Families often move their elderly into their own homes to avoid institutional placement. ° Family members participate in many crucial de- cisions (whether to call the doctor, for example, and whether nursing home placement should take place), and become the decisionmakers when the elderly no longer have the capacity to make de- cisions on their own. In the main, families maintain older people in the community, turning to nursing homes only when they have no other option and have exhausted themselves physically, emotionally, and sometimes financially. The myth that families dump older people into institutions is a particularly virulent expression of the myth of the "good old days." In short, the role of the family is so central to long- term care of the aged that gerontologists have reached firm consensus that the family, rather than the impaired individ- ual alone, should be the focus in planning services to nonin- stitutionalized older people. That approach indicates that assessment of the older individual be paralleled by assess- ment of the family's caregiving capacity and that services be geared to supporting the family's efforts and to prevent- ing undue strain. Families rarely are psychologically prepared for an older person's need for institutionalization. In general, people think that is something that happens in other fam- ilies, not in their own. The reality of such a prospect is a mental health crisis for all concerned, with the repercus- sions affecting every family member (Brody and Spark 1966; Spark and Brody 1970). Negative reactions on the part of the family are such a universal experience that it can be called a "normal" crisis. Feelings of guilt, conflict, and shame may coexist with the conscious or unconscious, but 161 very human, desire to be relieved of a severe and unre- lenting burden. Unresolved or latent family relationship problems (and what family is free of them?) may be re- activated and exacerbated--between spouses, between the elderly parent and the adult children, and among siblings. Anxieties about aging and separations, including the ulti- mate separation of death, may be stimulated. A common refrain heard from family members is "This has been the worst time of my life." Attention therefore should be paid to the family as well as to the elderly individual in the decisionmaking process preceding nursing home placement and in easing the psychological concomitants and conse- quences of such a decision. The characteristics of institutionalized older people have been well researched; they are on average a decade older than the noninstitutionalized elderly and have much higher rates of mental and physical impairments and func- tional disabilities. But advanced old age and disability in themselves do not account for institutionalization, since twice the number of severely impaired old people live in the community as in institutions (Shanas 1982). A critical dif- ference between the impaired elderly who live in the com- munity and those who are institutionalized lies in the availa- bility of social support in the form of family (Brody et al. 1978). Many elderly individuals have no family. About 20 percent of nursing home residents have never been married and about half are childless (compared with only about 18 percent of the total elderly population) (U.S. Bureau of the Census 1978). Indeed, the role played by adult children in delaying or avoiding nursing home placement is underlined by the fact that each additional child decreases one's chances of being institutionalized in one's old age (Soldo and Myers 1976). Other nursing home residents have lost family members over the years. Most are widowed and an undeter- mined number have lost children through death. The death or illness of a close relative is among the most common events precipitating admission to a nursing home (Townsend 1965; Brody and Gummer 1967; Brody 1966). Although having family decreases the chances of being institutionalized, it is by no means a guarantee. Nearly 15 percent of the elderly in institutions have a living spouse and about half have a living adult child; those who do not often have other relatives such as siblings, nieces, nephews, and grandchildren. When family does exist, a variety of other factors determine admission of an elderly person to a nursing home. 162 Although spouses of the impaired elderly typically exert heroic caregiving efforts, their own advanced old age often constrains their ability to perform the arduous tasks that are necessary. The nature of the support adult children can provide depends on such factors as their own health, finan- cial situation, competing responsibilities (jobs, spouse, and their own children), living arrangements, and geographic distance from the parent needing care. The "children" may themselves be in late middle age or early old age, with their caregiving capacities depleted accordingly (Brody 1966). Moreover, families vary in their tolerance for stress. Many researchers have called attention to the "last straw" quality that often characterizes the request for institution- alization of an elderly person. Latz (1958) referred to the family's "saturation point" beyond which intervention short of institutional admission is impossible, Lowenthal (1964) to the "endurance limit of caretaking others," and Sainsbury and Grad (1962) to the "ability to cope" as related to nursing home admissions. Recent research efforts have continued the tradition of Grad and Sainsbury (1966) in identifying the prolonged and unrelieved pressures on family members that can lead to institutionalization of the elderly. Among the negative effects experienced by some caregivers are neurotic symp- toms (insomnia, headaches, irritability, or depression), restrictions on social and leisure activities, isolation, dis- rupted household and work routines, family conflict, and emotional pressures (Reever et al. 1979; Archbold 1978; Danis 1978; Sanford 1975; Newman 1976; Gurland et al. 1978). The pressures appear to be most intense when the family shares its home with the older person. Parenthetically, the evidence suggests that coping with an old person with senile dementia is extraordinarily diffi- cult and stressful. The anxiety, fear, panic, and sense of loss of control on the part of the afflicted elderly person may be paralleled by anxiety, fear, and inability to cope on the part of the family. The need for constant surveillance; the inappropriate, unpredictable, often embarrassing be- havior; the fear of leaving the elderly alone lest they wander away or leave the water tap or gas jet open; the additional care needed by those who are incontinent; the inability to communicate easily with the older person; frequent disturbances of the caregiver's sleep; the stim- ulation of fears of one's own aging in general and of "inheriting" the disease in particular--all extract a heavy toll and place a particularly severe burden on family members (Brody 1978). 163 Elderly persons with a mental disability are con- siderably more likely to be placed in a nursing home than are those with physical disabilities (Newman 1976). Persons with severe chronic brain syndrome are about four times more likely to be in nursing homes than in the community (Winn and Kessler 1974). A pilot survey at the Philadelphia Geriatric Center found that all of the 36 residents who had spouses living in the community had some form of impaired brain function; the vast majority were afflicted with senile dementia. Certainly, persons with such diagnoses are over- represented in institutions; 50 to 60 percent of the institu- tionalized elderly have some degree of senile dementia compared with about 5 to 7 percent of the total elderly population. While a copious literature has accumulated about the caregiving activities of families of the noninstitutionalized elderly, much less information is available about the fam- ily's roles once the older person is in a long-stay facility. Not only is information lacking about what families actually do in such situations, but there is considerable ambiguity about what they should do. Undoubtedly, family roles change when an elderly fam- ily member moves to a long-stay facility--whether it is called a nursing home, a home for the aged, a rehabilitation center, or whatever. Some family roles remain constant, others recede, and still others may rise in relative importance. The erroneous view that total "separation" takes place when an old person is institutionalized is similar to the error often made with respect to noninstitutionalized older people and their families. Specifically, "family responsibility" may be viewed as a global concept including in an undifferen- tiated mass such things as financial support, love and af- fection, personal care, and instrumental services. Such blurring does not sort out family feeling and continuing supportive relationships from various concrete tasks. It does not consider what older people want from their fam- ilies and what help they accept or prefer to get from "for- mal sources." It does not evaluate the family's capacity to perform the various needed services. And it ignores psycho- logical truths about the qualitative continuity of family emotional bonds over time and distance. In turning to information about the roles of the family when an older person is in an institution, some clues are provided by data from the 1976 Survey of Institutionalized Persons (U.S. Bureau of the Census 1978). The survey found that 9 out of 10 residents had a "next-of-kin'": of those 164 residents, about 13 percent were still married, 48 percent widowed, 6 percent divorced or separated, and 32 percent had never married. Of the 10 percent without any next- of-kin, 30 percent were widowed and 7 percent were divorced or separated, but most (55 percent) had never married. The next-of-kin for residents age 65 or over was most often an adult child (55 percent). Among those who were married, 46 percent identified their spouse as "the person to be notified" and 32 percent chose an adult child. Adult children, then, are the most prominent of elderly residents' family supports. But significant numbers of residents named other relatives: 18 percent named a sibling, 3 percent a grandchild, and 17 percent another relative. In most cases (57 percent), the nursing facility had been selected because of its geographic proximity to the home of the next-of-kin. Most of the spouses (90 percent), children (70 percent), and grandchildren (74 percent) named as next-of-kin lived within 24 miles of the nursing facility. As might be expected, residents having families get more visitors. More than half of nursing home residents with a next-of-kin received visitors at least weekly, compared with 27 percent of those without kin. The vast majority of spouses (86 percent) visited at least weekly, as did 70 percent of the adult children named, 68 percent of the grandchildren, and one-third of the siblings. Only a small proportion of nursing home residents with family (5 percent) had no social contacts outside the insti- tution, compared with one-third of those without family. A small proportion of nursing home residents (60 percent) never left the facilities overnight; two-fifths had day leave during the course of a year. Twenty-eight percent of the nursing home residents had lived with their next-of-kin prior to admission. Of those, three-fifths reported that the resident had not caused any strain on the family's relationships, such as conflicts among family members, while two-fifths had experienced such strains. The survey data do not refer to other types of strain on family members that may have occurred. Adult children most often handled the older people's finances (44 percent) when necessary, and 18 percent of the next-of-kin contributed financially to the resident's support. In addition to maintaining contact with the resident and managing their money, 9 out of 10 next-of-kin had been in touch with personnel of the nursing home during the year preceding the survey--a nurse (41 percent), the administrator (33 percent), other staff (6 percent), or a doctor (6 percent). 165 Most of the family members surveyed visited their elderly relative regularly, managed their relative's money when necessary, and talked with staff of the facility; some contributed financially. Such data do not tell us about the qualitative aspects of their activities, however—about the content of the family members' visits to their relatives or their contacts with staff, the effects they experience from having institutionalized relatives and from visiting them, or how they perceive their roles and activities. How does admission to a nursing home affect the rela- tionships between older persons and their families? Are family visits to the nursing home resident made out of a sense of obligation? Are they an expression of affection and caring? What about telephone contacts? How many other relatives and friends visit in addition to the one named as next-of-kin? How many visit more often than once a week? Does the family provide any other services? How often do they talk to institutional staff, and about what kinds of things? Do they perceive these contacts as satisfactory? The continuity of family relationships with elderly nursing home residents has been described by some scattered small-scale research studies. An investigation by Smith and Bengtson (1979), which examined the effect of institutionalization on the quality of family relationships, noted beneficial consequences in most (55 percent) cases— that is, a renewed closeness and strengthening of family ties (30 percent) or discovery of love and affection (15 percent). In another 25 percent, they found a continuation of close- ness. The families attributed the positive effects to the alleviation of preadmission stress, improved physical or mental status of the parent, an opportunity to spend time together in recreational and interpersonal activities rather than caregiving ones, and the parent's involvement with other residents in the institution. In 20 percent of the cases, a "separateness" from family continued, and in 10 percent interaction continued but lacked quality. None of the sampled families had abdicated their responsibility for the elderly family member, although this undoubtedly does occur on occasion. Research at the Philadelphia Geriatric Center (PGC) tested the effectiveness of an individualized program for residents with moderate to severe senile dementia, tar- geting for treatment their "excess disabilities" in seven spheres of functioning (Brody et al. 1971). Kahn (1965) defines an "excess disability" as the discrepancy between a person's functional incapacity and that warranted by the actual impairment. The experimental group and a control 166 group were distinguished from each other after a year of treatment primarily by improvements in the experimental group's family relationships and in their activities (though all differences favored the experimental group). In both the PGC study and the Smith and Bengtson study, the host facilities provided a high quality of care, encouraged the involvement of families, and made family members feel welcome. The implications here for insti- tutional management are obvious. The PGC study also found that the elderly residents’ emotional investment in their families had become rela- tively more important to them in advanced old age after they were institutionalized as compared with their middle years (perhaps because of the reduction in their other roles and associations as they aged) (Kleban et al. 1971). Their families continued to be involved with them: most (80 per- cent) visited at least weekly and some (12 percent) visited daily; the more deeply impaired the resident was mentally, the shorter and less enjoyable were the visits (Moss and Kurland 1979), a finding similar to that of York and Caslyn (1977). In addition to adult children, many siblings (23 per- cent), grandchildren (43 percent), and other relatives visited. Among the services the relatives provided for the residents were grooming, bringing things (food, clothes, spending money, flowers), straightening bureau drawers, taking care of laundry, taking the residents for walks, cheering them up, and making special visits on the residents’ birthdays. Even though the residents in the PGC study were af- flicted with senile dementia, 22 percent of the relatives reported that the older people were helpful to them when they visited--cheering them up at times, giving them advice (e.g., "to take it easy"), telling them about the family's past history, and sharing recipes. The residents often initiated conversations about family events, the past, and the insti- tutional milieu. Interestingly, they were more likely than their family visitors to bring up disturbing topics (such as family ill-health or deaths, relationship problems, or finan- cial difficulties). For their part, many family members were protective and had not told the residents about two- thirds of such problems or events which had occurred during the past year. Most family members (70 percent) said they frequently talked about their institutionalized relatives with other relatives and worried about them, primarily because of their poor health and deterioration. Visiting relatives interacted with others in the insti- tution in addition to the family members they came to see. 167 Most (91 percent) talked to the staff, to the patient's room- mates (66 percent), and to other residents (60 percent). The PGC study documented the continuing contacts of family members with even those residents suffering from senile dementia. Their concern with the residents' deterio- ration points to the relatives' need for help in coping with the decline of the aged residents (see also Rotenberg and Rabin 1973; Safford 1976). For their part, the aged resi- dents' continuing strong interest in the lives of their family members underlines the importance to them of their family ties. In another study, the well-being of residents in nursing and old age homes was found to be vitally affected by their receiving attention and assistance, not from just anyone, but from one or more preferred members of the family or a de- voted friend (Harel and Noelker 1978). The importance of the physical environment of the facility in encouraging family visiting was underlined by the increase in visiting when older people with brain impairment were moved from a traditional old building to a new, experi- mentally designed facility at the PGC (Lawton 1978). In a research study that elicited the opinions of family members, they overwhelmingly expressed their preference for the segregation within nursing homes of residents suffering from senile dementia (Liebowitz et al. 1979). The literature contains many descriptive reports that speak to the importance of nursing home residents' family ties and describe programming designed to support them. The Philadelphia Geriatric Center's efforts are fully de- scribed elsewhere (Brody 1977; Lewis 1980). In brief, the family-focused approach is integrated into the services from the first contact with the facility. Individual and family counseling is provided during the decisionmaking and appli- cation process, throughout the waiting period, at the time of relocation, throughout the duration of the older person's stay in the institution, and ultimately in bereavement. Many group programs meet the special needs of families to discuss their psychological reactions to admission of their elderly relative and ongoing concerns, and to provide edu- cational information about institutional programs and special ailments such as senile dementia. A number of other facilities have family-oriented pro- grams or involve family members as volunteers, although Tobin and Kulys (1980) point out that such programs are found primarily in voluntary sectarian homes. What roles, then, do family members play when an el- derly relative is in a nursing home? First, let us recapitulate 168 the roles played by the family in relation to the noninstitu- tionalized elderly: l. Sharing family homes or helping maintain the home of the older person (i.e., repairs). 2, Personal care (e.g., bathing, dressing, feeding). 3+ Medically related care (e.g., injections). 4. Instrumental services (e.g., household mainte- nance and help with shopping and transportation). 5. Financial support. 6. Money management. 7+ Affective services (emotional support, social- ization). 8. Mediation with the "formal" system (e.g., advo- cacy and the securing, mobilization, and moni- toring of services). 9. Participation in decisionmaking (e.g., when to call the doctor, whether to enter a nursing home). The first four familial roles are the ones that change most dramatically when an old person enters a nursing home. Family members no longer share their homes with the older relative. They no longer lift and turn the bed- ridden; bathe and dress the disabled; shop, cook, and clean for those who cannot do so; nor protect the confused from setting fires or wandering naked into the cold. They may perform some small service, such as taking the family mem- ber for a walk or shopping for a new dress or a gift for the great-grandchildren. The fifth category is financial support. Because of the current climate of social policy, we must devote special attention to the role of the family in providing financial support for old people. The trend is toward compulsory financial support of nursing home residents by their adult children. A vast literature exists on the subject of filial fiscal responsibility. Alvin Schorr's monographs written in 1960 and 1980 remain the definitive statements (SSA 1960, 1980). His exhaustive, thoroughly documented investiga- tions point out with indisputable clarity "that the help that takes place between people is a function of the way they feel about each other"; that support requirements impose on some old people a standard of living lower than public as- sistance levels; and that where support is procured, the deprivation may be shifted to the adult children and their families, handicapping them and their children in their own struggle for a better standard of living. He concluded that "there is a high human cost to support requirements." It is a peculiar phenomenon that our society believes that old 169 people should be independent of their families for day-to- day expenses (thanks to Social Security and Supplemental Security Income, only about 3 percent of the noninstitution- alized elderly depend on their families as an income source), yet is ready to oblige these same families to pay for the high costs of nursing home care. Moreover, research has established that older people do not want to accept money from their adult children (Brody et al. 1983). They do not equate financial support with love and affection. How many old people will be deprived of the nursing home care they need because they are unwilling to compel their aging children (many of whom are the grand- parent generation) to support them at a time when those "children" are either looking toward retirement or are al- ready retired and trying to assure that they themselves do not become dependent? And what of elderly people who must deplete their resources to pay for the nursing home care of an impaired spouse? Apart from the human costs of such requirements, the net result is to perpetuate economic dependency. In short, the evidence indicates that financial support is not a role that should be mandatory for families of the insti- tutionalized aged. While no further research is needed on this issue, the information requires constant communication to those who make policy and to the public. The management of money--the sixth service in the list--is quite another matter. Older people do want and expect their families to do this when needed, and this is the pattern both in and out of nursing homes. The seventh category of services--the provision of affective support--is a major family role that continues after institutionalization and is critical to the mental health of older people. When families have been relieved of many arduous personal care and instrumental tasks, their affec- tive support may become even more important to the insti- tutionalized relative. Their families remain the principal providers of emotional support and socialization. Their families care, they visit, they phone, and they are present during illness. They provide a link to the outside world. Obviously this role should be encouraged and facilitated by institutional policies and routines. The two family roles that are sustained after nursing home placement are those that are most valued by the el- derly who are not in institutions as well--specifically, affec- tive support and the intimate task of money management (Seelbach and Saurer 1977; Brody et al. 1983). The family continues to be "the someone who cares," to meet the 170 elderly person's needs for affection and for social roles that are shared by all human beings. This does not mean, however, the expression of affec- tive support is free of problems. Family behavior, like the behavior of the older people, may be maladaptive to the nursing home situation. Moreover, the past relationships of older people and their families are carried into the nursing home. All institutional personnel are familiar with family members who make a multitude of angry complaints and unrealistic demands, as well as those who are fearful of "bothering" the staff. Some "visit" by arriving daily at the nursing home at dawn and staying until the resident goes to bed (no one else can take proper care of the old person). At the other extreme, some family members distance them- selves ("I can't bear the way my mother is now"). Anecdotal reports (Brody 1977; Locker 1976, 1979) suggest that indi- vidual and group counseling or therapy can improve such situations and provide an opportunity to resolve some of the underlying psychological problems. Family members also continue to play the major role as advocate and mediator with the "formal" system. This is accepted as a legitimate role when an elderly relative is not in an institution, but becomes ambiguous after nursing home admission has taken place. However, the formal system that must be dealt with is the micro-system of the nursing home rather than the social/health macro-systems of the community. Most families are uncertain about how to enact the role of mediator/advocate in the nursing home. They often are reluctant to complain about the resident's care, fearing that staff will retaliate to the disadvantage of the resident who is "in their power." The uncertainty of family members about their role is compounded by differing perceptions and attitudes on the part of nursing home personnel. On the one hand, staff often assume that the family has no legitimate role once the nursing home has "taken over" care of the old person. Family involvement--asking questions about the elderly resident's condition, "complaints" about various aspects of care, and so on--may be viewed as "interference" and experienced as criticism. But family members receive mixed messages. If they are not visible and articulate in expressing their concerns, their behavior is indicted as evidence of "dumping" by hardhearted families who have severed relationships and abdicated their spousal or filial responsibility. Thus families are caught in a classic "Catch-22" bind. 171 Relationships between nursing home staff and families of residents also may be tinged with unspoken tensions de- riving from differences in socioeconomic status and race or ethnicity. Overall, how do institutional personnel view the family in its role of advocate? Do they perceive that the family has the right to talk to doctors, to question procedures, to register complaints and receive responses, to visit freely, and to have all the privileges exercised by families whose elderly relatives are not in institutions? The ninth role--participation in decisionmaking--is equally ambiguous. A multitude of decisions are constantly being made about the lives of the residents. Some are necessarily the prerogative of nursing home staff--when, for example, a room change is necessary because the resident's changed condition requires a different level of care. But when residents do not have the capacity to decide for them- selves, in whose province are many other decisions? Who decides, for example, whether a brain-damaged resident who can't walk steadily should be restrained or permitted to walk and risk falling? Not only the differing perceptions of staff and family about the family's roles, but the differing perceptions of the family and the residents themselves may be a source of dif- ficulties. What, for example, do the elderly expect and wish with respect to family visiting? Are those expectations congruent with the family's perceptions of what constitutes appropriate frequency of visits? Both clinical and research evidence indicates that the mental health of elderly nursing home residents and the mental health of their family members are interlocked; each affects the other. The older person's and the family's well- being depends to a significant extent on their mutual relationships after admission as well as before, with all generations being affected. The presence and active par- ticipation of families and surrogate families can also serve to reduce the "totality" of the institution, not only for the elderly people, but for the staff. As Barney (1974) pointed out, everyone needs the interest and appreciation of other people to keep morale and the quality of work high. Con- cern with the mental health of older people in institutions, then, must include concern with the mental health of the family. The role of the family is so critical to the well-being of older people in long-term care facilities that special atten- tion must be paid to those who have no family or whose family ties are scant or tenuous. Recall that 10 percent of 172 elderly nursing home residents or about 150,000 people have no one who can be designated as next-of-kin. Most residents have been widowed. Of the half who have living children, some are separated from them by geographic distance. Some are alienated from family members. These old people are particularly vulnerable to feelings of loss, loneliness, or abandonment. While their physical needs are taken care of, no bureaucratic organization can substitute completely for the emotional input they lack. They are also deprived of other services typically performed by families, such as that of mediator with the system. The continuing rapid increase in the very old population suggests that the number of old people in nursing homes will increase numerically and proportionately since the very old are the most vulnerable to the severely disabling mental and physical ailments that characterize so many in institutions— Alzheimer's disease and related disorders, for example. The very old also face dwindling family support systems due to death and illness. Moreover, the number of children one has affects the likelihood of one's becoming institutionalized; and it seems unlikely that the birthrate, which fell during the same period that the elderly population was increasing, will return to its former level. Besides the decreased birthrate, another change that has occurred relates to the availability for parent care of the middle-aged women who are the traditional caregivers, but who have now entered the labor force at a rapid rate (Brody 1981). Research shows that the current generation of women (and they are the principal caregivers) are as committed as past generations to the value that care of the elderly is a family responsibility (Brody et al. 1983). Retro- spective behavioral data from the same study speak to the continuity of intergenerational relationships as expressed in the giving and receiving of emotional support; furthermore, patterns of helping appear to be transmitted from one generation to another (Fulcomer et al. 1982; Johnsen and Brody 1982). Social policy should foster the provision of quality nursing home care of the elderly not only in the interests of the older people, but in the interests of family members. The Government must mandate the elements of quality care and key reimbursement accordingly. What is viewed as "quality" care must go beyond survival, subsistence, and medical maintenance to include services that make worth- while the lives that have been prolonged--social and recre- ational services, for example, and services to the family. When families have no alternative but to place their elderly 173 relatives in nursing homes, their mental health demands that they feel they are not consigning them to poor conditions and to long hours, days, weeks, and years of mere "custodial care." Nursing homes should welcome families and address their concerns. Consumer groups are becoming increasingly insistent that they too have a role in regulating nursing homes. They consider their involvement, as well as the par- ticipation of families in decisions about nursing home facil- ities and individual patients, to be necessary to assure a high quality of nursing home care (Older American Reports 1983). Efforts to identify appropriate roles of the family must keep in mind the caveat that just as older people themselves are heterogeneous, so too are their families. Families vary in composition and structure; in the ages of the family members; in socioeconomic status and ethnic backgrounds; in personalities, life styles, health, and personal situations; in geographic proximity or distance; and in the quality of their longstanding family relationships that go back half a century or more. Families therefore differ in the nature and number of roles they can play, and expectations will differ for each family. Our list of research needs that follows is based on our belief that some things don't need to be researched in order to know that they are desirable. We just accept certain goals as "good"--such as sustaining and improving the family relationships of old people in nursing homes and the rights of families to be involved in their care. Some of the research questions, then, are directed toward ways of achieving those basic goals. Among the many questions that researchers should address, we draw attention to the following: ° What are the mental health effects on families of having an elderly relative in a nursing home? How can negative effects be mitigated? ° What role changes occur for family members when an impaired relative is admitted to a nursing home? Can family roles be identified, clarified, augmented, and enhanced? ° How do families perceive their roles in nursing homes and how would they like them to be different? How do they perceive staff roles? ® How do staff perceive families' roles? What about their own roles vis-a-vis the family? How can those views be modified when this is appropriate? ° What methods are most effective in integrating families into institutional programs so that they become partners with the staff in caring for the 174 elderly residents? How does such collaboration affect the residents, family members, and staff? ® For those residents without families or with scant family resources, how can "interested others" be provided to enact roles traditionally played by families? How effective are such surrogate family programs? ° Does a family's ethnicity affect the roles it plays in relation to an institutionalized elderly family member? In conclusion, we believe that efforts must be made to enhance the roles of families in relation to their elderly relatives who reside in nursing homes. We believe that improving the well-being of families in relation to the roles they play for these institutionalized older people will im- prove the well-being of the old people themselves. How- ever, even at best, such efforts will fall short of the mark in mental health terms. Families will continue to experience strain, to worry, to be upset, and to be sad. They will be anxious about their own aging. They will inevitably (and often legitimately) find things to complain about in the nursing home. They will feel guilt and sorrow. But the task of social policy and of nursing homes is to mitigate such pain to the fullest possible extent, rather than to exacerbate an intrinsically painful situation. References Archbold, P. "Impact of Caring for an Ill Elderly Parent of the Middle-Aged or Elderly Offspring Caregiver." Paper presented at the 31st Annual Meeting of the Geron- tological Society, 1978, Dallas, Texas. Barney, D.L. 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CHAPTER 13 ENVIRONMENTAL IMPACT ON MENTAL HEAITH AND FUNCTIONING IN NURSING HOMES: IMPLICATIONS FOR RESEARCH AND PUBLIC POLICY Martin V. Faletti, Ph.D. Director of Research Miami Jewish Home and Hospital for the Aged Stein Gerontological Institute Miami, FL This paper reviews and discusses current work on the relationship between the environment in long-term care fa- cilities and the mental health of residents as a precursor to identifying key issues and research needs in this area. While this presentation must necessarily be brief, I hope it will stimulate more in-depth discussions and further research to fill critical gaps in our knowledge. The focus of this conference on mental illness in nurs- ing homes suggests that aspects of the environment might either mediate or exacerbate the onset, severity, or chron- icity of mental dysfunction in nursing home residents (e.g., depressed affect, confusion, or disruptive behaviors). I will begin by defining some terms--partly to be clear about the problem at hand and partly to illustrate some major issues which linger in the area of environment and behavior in general. Mental illness in nursing homes can, depending on definitions of key terms, cover a multitude of issues. A nursing home is usually defined as a residential facility which provides long-term or extended care for chronically debilitated older adults. This includes extended care fa- cilities associated with hospitals, as well as nursing homes ranging from small 50-bed facilities to larger multilevel geriatric care facilities with hundreds of beds. But the term nursing home can also refer to convalescent homes oriented toward recuperative stays and to extended mental hospital facilities. Thus, before we even begin to analyze dimensions of nursing home environments that are potentially relevant to mental health concerns, we have an array of care envi- ronments which differ greatly with respect to their popu- lations and mental health problems. One fundamental distinction we can make is that convalescent facilities have patients, whereas long-term care facilities have residents. While patients may be 181 unaffected by the institutional, or hospital-like, aspects of their care environment (they will be leaving), residents are likely to, and should, view these same environmental forms in the context of "home" and thus are likely to react very differently. While this paper will try to consider dimensions of environment variation which are useful in a range of fa- cilities, differing care goals and populations are a potential component of more comprehensive models of environmental effects. While it is not within the purview of this paper to dis- cuss the epidemiology of mental illness in nursing home fa- cilities, nonpsychiatric institutions generally face a broad range of depression-related problems as well as confused and often disruptive behaviors of the type associated with dementias. Obviously, psychiatric facilities and multilevel care facilities with psychiatric units experience more psy- chotic disorders. Again, the differences in perceptual and cognitive processing associated with various classes of dis- orders are unlikely to mediate the impact of various aspects of the environment. For example, while dementia of the Alzheimer's type appears to be more prevalent than had been thought, many still caution against viewing confusion, disorientation, and dysfunctional behavior as necessarily re- flecting this condition which, at present, we can do little about. This is particularly true in the study of environment and mental function. Many aspects of the care environment can contribute to confused and disoriented behavior. Since Alzheimer's remains a diagnosis by elimination (or his- tology), we want to be able to positively discount other con- tributing factors, such as those of the environment, in the onset of dementia symptoms. Thus, for purposes of this dis- cussion of environment, mental illness is to some degree ex- tended to encompass mental functioning in support of adap- tive behavior at the instrumental and cognitive level. Conceptualizing Environmental Variation A thorough review of the state of the art in research on environment and behavior would have to include human fac- tors and ergonomics, environmental psychology, and social networks and support. Within the gerontological literature, research on effects of relocation, barrier-free and suppor- tive environments, and social supports resonates many of the concepts developed in work with other populations. One major problem with much research on environment and, in 182 particular, care environments is the tendency to examine the effects as a function of environments which reflect change or manipulation of a number of possible dimensions of variation. New environments in a relocation study may, for example, encompass not only a new dwelling unit but also a new neighborhood, new staff, and new residents. Thus, it is often difficult to specify which aspects of the environment played the most significant role in producing observed effects. At the opposite end are studies which seek to factor a range of environments to isolate common dimensions associated with patterns of behavior exhibited by their residents. Clearly, some conceptual schema is needed to aid in the systematic consideration of current work and lines of in- quiry which might be fruitful. This paper reflects an ela- boration of schemas which have been suggested for con- sidering environmental variation and, while open to spirited discussion, has at least some heuristic value and tries to suggest an approach to the above issue. We may begin by distinguishing between the physical environment and the social or interpersonal environment. The physical environment represents the built environment (with its spaces, objects, and devices), while the social en- vironment encompasses the people in the environment (family, peers, and care staff). Physical environments, at least in community planning literature, are often separated into micro-, meso-, and macroenvironments--a distinction which recognizes that the home (microenvironment) exists in the context of a neighborhood (mesoenvironment), which in turn exists in a city or collection of neighborhoods (macroenvironment). In the context of a nursing home, we might consider a resident's room as the microenvironment of the home. The unit or floor, organized around a nursing station, is analo- gous to the mesoenvironment of a neighborhood--especially where different units reflect distinct levels of care. The total institution and the community spaces to which it is linked are the macroenvironment. These distinctions loosely reflect the likely immediacy of effects on the individual. Similarly, recent work with social network theories suggests a similar system of proxemics for formal and in- formal social agents--usually a series of concentric circles representing psychological space. Kahn and Antonucci (1980) use this system to elicit identities and positions of agents with subsequent collection of data on their role functions and tasks. This approach provides some insights 183 into how people see their social world, who is in it, and what relationships exist between those persons and particular agents or classes of agents. Perhaps the most useful aspect of these approaches is that they provide some overarching constructs with which to view staff versus formal caregiving. Conceptualizing Environmental Outcome The investigations required to establish the extent of the relationship between aspects of the environment and mental health problems depend in large measure on what class of problems one considers most salient. A focus on depression or affective disorders requires some mechanism to mediate environment and an internally experienced af- fective state. A focus on confused and disoriented behavior is the more straightforward problem since environments vary with respect to complexity and subtlety of cues for appropriate behavior. Both outcomes have been the subject of research and, for the most part, studies have reflected person-environment paradigms of the type suggested by Lawton (1973), Kahanna (1975), and others. Much of this research has suggested competence and control as con- structs which mediate environment and adaptive outcomes in ways which are sensible to both problem areas. Relational Constructs: Environment to Outcomes Competence models of person-environment transactions generally focus on the extent to which the features of en- vironments demand actions or responses which exceed the capabilities which individuals bring to the situation. This approach has been extremely useful in conceptualizing prob- lems in community environments since it emphasizes analysis of disparities between environmental demands and personal capabilities with a view toward adjusting environ- ments to make them more supportive. This capability- demand approach is particularly useful in the area of instru- mental behaviors and, to an untested extent, cognitive tasks involving information processing (e.g., processing cues). Essentially, this approach views environments in functional terms, recognizing that people use spaces, objects, and devices to achieve certain outcomes. The configuration of the environment demands that certain physical and mental capabilities be present in order to successfully use the environment. We can extend this view, in the institutional setting, to the "use" (via influence) of social or professional others to achieve certain ends. Beyond the question of actual 184 outcomes of transactions and their objective value, research has suggested that ways in which people evaluate the results of such transactions play a significant role in how they view their level of control over the environment and their trans- actions with it, and ultimately how they view themselves. In theory, people come to an environment with some expectation of being able to influence the outcomes of their transactions with environments. This may involve the ability to use the physical environment to accomplish needed activities or to influence the behavior of others (the social environment) toward some end. Many authors dis- tinguish between actual control over transactions and the perception of control over transactions because the latter plays such a major role in determining a person's strategy for future dealings with that environment (e.g., effec- tiveness versus helplessness). This represents one of the major areas of concern in aging because it relates directly to questions concerning what we want our care environ- ments to reflect and the conditions under which particular types of environments are beneficial or detrimental to care goals. Recent literature reflects two distinct sets of issues in this area. First, there is the extent to which a particular attribution concerning control is associated with positive or negative adaptive outcomes. For example, while studies with general populations of older adults have suggested that autonomy (i.e., internal locus of control) is associated with more positive morale and self-esteem, some studies have indicated the opposite when applied to nursing home popu- lations. Further, it has been suggested that expectations about the specific environment mediate this relationship. A second, and more complex, set of issues concerns the factors which affect the formation of attributions about control. These include not only real and perceived attribu- tions about the environment but also perceptions of the transaction which relate the individual's own actions to the environment's response. The latter notion suggests that in- dividuals monitor and evaluate their transactions with the environment in order to form judgments about their level of control. Nevertheless little work has focused on a synthesis which might posit type, frequency, or saliency of failed transactions most likely associated with judgments of con- trol which, in given populations, are associated with mal- adaptive outcomes. However, each has relevance to the task of describing the dynamics by which the environment affects mental health problems among nursing home residents. Environmental Impacts: Issues and Research Directions The following sections consider needs and directions for research in the context of current work on physical and social aspects of institutional environments. The role of environmental factors must, however, be considered in light of the changing demographics of nursing home residents. Specifically, nursing home residents are increasingly older and more debilitated, both mentally and physically. Their physical frailty typically affects a range of competencies in daily activities and mental function--principally dementia- type symptoms. However, some residents suffer mental debility with accompanying physical limitations while others suffer physical limitations without problems in mental func- tion. Indeed, patient mix is a much-discussed component of institutional management as more facilities adopt multilevel care approaches--an extension of the community-based con- tinuum of care concept which advocates providing support at the level of resident/patient needs consistent with maxi- mum autonomy (of which they are theoretically capable) and minimum stress and risk. This raises an interesting dilemma. While many institu- tions will continue to attract residents with a variety of problems, the trend appears to be one of more debilitated residents and thus, to some extent, a more homogeneous population with respect to functional ability. Lawton has advanced what he terms the environmental docility hypo- thesis. This simply states that the lower the person's capa- bilities are relative to environmental transactions, the more salient are the impacts of environmental demands (or changes in those demands). Thus, increased debility in resi- dent populations as a whole would suggest that the impact of environmental variables on overall functioning of resi- dents would tend to be greater. Yet, one can also posit that at extreme levels of debility (e.g., severe cognitive dysfunc- tion), the environment may be only minimally processed and changes would have little impact. The same environmental interventions aimed at supporting self-care in instrumental, personal care tasks for a mentally intact, physically debili- tated person may be totally inappropriate for persons whose cognitive impairment is the major source of debility. This raises the specter of the costs and efforts asso- ciated with creating a number of environments within a care system already taxed in terms of costs and capabilities. While environmental intervention is doubtless desirable, we have to ask more detailed questions about both positive and 186 negative impacts of environmental features and the condi- tions under which these effects are observed. The following directions present one view of how we might pose these questions for research. Physical Environments Instrumental competence and mental health. While design of barrier-free and supportive environments for older adults has been a major emphasis in community housing, the issues in environmental design for nursing homes are some- what more complex. Because the nursing home is probably the ultimate in supportive environments, there is a concern that this environment is often made too supportive and, coupled with rigidity in activity schedules and patterns, can induce greater dependency in residents. With the exception of the work by Koncelik (1976) and his colleagues, relatively little systematic attention has been given to the design of spaces, objects, and devices for institutional environments which might enhance the self-care abilities of residents and thus return to them a measure of control over their trans- actions with environments. There is even less work on the extent to which this may be viable or result in more positive functioning by residents. Perhaps the place to start is with a fairly systematic and detailed assessment of instrumental competence in self-care among samples of nursing home residents. The key element would be data showing the extent to which environ- mental factors are the major source of problems--clearly a human factors type of study. However, the objective would be to determine the extent to which loss of competence due to environmental factors is associated with significant men- tal dysfunction. A more ambitious program might analyze the extent to which environmental modifications which in- crease the residents' ability to perform self-care tasks result in (1) increased self-care behavior and (2) decreased mental dysfunction (relative to a control group). Current data do not specify sources of inability to accomplish instru- mental tasks; therefore it is difficult to ascertain whether the residents actually perceive the environment to be out of their control or whether motivational factors are largely re- sponsible. Before we examine major strategies to change physical environments, we should consider the likely benefits to be accrued and what resident groups are most likely to benefit from such changes. Privacy in the microenvironment. One of the major issues confronting designers of nursing homes concerns 187 provisions for residents' privacy versus the high cost of single rooms in institutional care. While many residents indicate preference for the privacy of a single room, there is little evidence that loss of such privacy leads to signifi- cant mental dysfunction in all cases. We might begin with some research which examines both physical and psychologi- cal dimensions of privacy and the extent to which one might achieve the perceptions of privacy requisite to mental health with design solutions that do not require physical isolation. Koncelik's (1976) work offers some good sugges- tions in this direction, although their effectiveness remains to be demonstrated. Designing for instrumental competence. While the benefits of an optimally challenging environment have been suggested (Gelwicks and Newcomer 1974), little has been done to define the physical (and social) parameters of such environments in many areas of daily living--and we must remember that nursing homes are environments for daily living. We can see clinically the benefits of design and re- habilitation engineering in restoring or maintaining compe- tence and control in many debilitated populations. Yet wheelchairs, walkers, and other features of an institution used by residents in daily activities have been given little attention. With the exception of some work by designers (e.g., Bednar 1977), there has been little effort to rethink the behavioral sequelae of current or proposed designs. Yet we continue to emphasize the achievement of maximum competence as beneficial without considering environ- ment--a major factor in whether competence at any level can be achieved. “Designing for cognitive competence. Given the pre- valence of confused and disoriented behavior among nursing home residents, it is astonishing that work in sensory and perceptual processes in aging has not examined the en- vironment in greater depth. Pastalan (1973) and others have shown the way in terms of how environmental features can interact with sensory and perceptual changes to result in re- duced performance with respect to processing cues and orienting one's self in the environment. This is particularly true in the meso- and macroenvironments where residents must navigate to attend meals and use community rooms or other facilities. Another direction might explore changes directed toward increased sensory stimulation or instrumen- tal activity and some tests of effects on physical and mental function. At the Miami Jewish Home and Hospital for the Aged in Miami, Florida, we are currently engaged in con- sidering a vita exercise course scaled to resident needs and 188 capabilities based on data from our human factors research (Faletti 1984). However, this is only one approach and re- flects a unique set of conditions and other work should explore other solutions. Social Environment There is probably no other area about which we are less empirically informed than that of social systems of nursing home residents. Social network/support research has pro- vided a range of approaches and useful methods which can be readily applied to resident populations. Dr. Rachel Pruchno of our Stein Gerontological Institute has been using a networks instrument to study responses of residents to in- stitutional relocations. While such social networks are smaller than those found among community residents, they provide a much clearer look at the resident's view of the social environment and the extent to which it provides, or fails to provide, support. Social networks: who and what. We lack basic taxo- nomic work which specifies the ways in which residents view staff (formal agents) and family and peers (informal agents) and the effects of these relationships on mental adjustment and function. We know little about under what conditions and to what extent staff can serve as effective substitutes for family or volunteers with respect to social supports--for example, as confidants. Most investigations focus on staff attitudes as the major interpersonal aspect in the environ- ment; yet a nursing home is clearly more than staff/resident interactions. We have not explored the viability or desir- ability of exchanges of help or support among nursing home residents even though we have data suggesting its beneficial impact on community residents. Social networks: demand or support. Beyond taxonomic questions concerning networks, there is an im- plied assumption that social networks are in large measure a reflection of support (help provided to the target of the network). I suggest we consider the demand aspect of net- works in the negative sense, both with respect to community and institutional residents. We rarely ask about negative agents in the network--those that are the source of prob- lems, distress, or demands on time and energy. We should not take lightly the expressed concern of residents about what a son, sister, or other person would do if they (the resi- dent) should die. Regardless of our view of things, that may be a very real source of frustration, anger, or depression. Yet we have no real idea about its prevalence or role in the problems we see inside nursing facilities. 189 Environmental Change: A Global Concern The evolution of multilevel geriatric care necessitates increased use of intrainstitutional relocations to match resi- dents with appropriate care needs. Current literature on re- location has not dealt extensively with relocations inside an institutional setting and even less with how changes in spe- cific physical or social features of institutional environ- ments affect subsequent functioning in the new unit. We are currently involved in such an effort, but work in a range of representative nursing facilities is needed to give a more complete picture. Afterword: Some Considerations for Design The limited list of concerns I have suggested for re- search only begins to explore the range of environment- related issues. However, regardless of directions, at least two considerations in designing studies are crucial to a thorough understanding of the relationship between in- stitutional environment and mental health. First, we need data on small and medium-size facilities as well as on the large centers which are currently the major cites of research. While larger facilities can test new models for care and provide extremely useful information regarding innovations, techniques which can affect a large number of nursing homes nationally must at some point be tested for translatability into smaller facilities where a large part of the Nation's nursing care takes place. In ad- dition to being recipients of techniques proven in larger facilities, administrators and staff in these smaller facilities often have innovations which need to be examined and, if possible, translated to the larger scale. Policy data must include residents of all types of facilities if we are to have a realistic and coherent picture of where we are or where we can go. Second, we need to think about future nursing home residents and the lifestyles, patterns, values, and attitudes they will bring to the institutional setting. We tend to look at today's older adults and say, "This is aging." It is not-- and we must recognize that future institutional environ- ments will be radically different--probably because they will have to be. As the generations that wrought the sexual and technological revolutions grow older and move into nursing homes, we may be sure that our present solutions will have to undergo further revision. 190 References Bednar, M.J. Barrier-Free Environments. Stroudsburg, PA: Dowden, Hutchinson and Ross, Inc., 1977. Faletti, M.V. Human factors research and functional environments for the aged. In: Altman, L.; Lawton, M.P.; and Wohlwill, J., eds. Elderly People and the Environ- ment. (Human behavior and environment: Advances in theory and research, Vol. 7). New York: Plenum Press, 1984. pp. 28-35. Gelwicks, L.E., and Newcomer, R.J. Planning Housing Environments for the Elderly. Washington, D.C.: National Council on Aging, 1974. Kahanna, E. A Congruence Model of Person and Environ- mental Interaction. In: Windley, P.G. and Ernst, G., eds. Theory Development in Environment and Aging. Wash- ington, D.C., Gerontological Society of America, 1975. Pp. 254-263. Kahn, R.L., and Antonucci, T. Convoys over the life course: Attachment roles and social status. In: Baltes P., and Brim O., eds. Life span development and behavior. Vol. 3, 1980. New York: Academic Press. pp. 263-270. Koncelik, J.A., ed. Designing the Open Nursing Home. Stroudsburg, PA: Dowden, Hutchinson and Ross, Inc., 1976. Lawton, M.P., and Nahemow, L. Ecology and the aging process. In: Eisdorfer, C. and Lawton, M.P., eds. Psy- chology of Adult Development. Washington, D.C.: American Psychological Association, 1973. pp. 619-674. Pastalan, L.A. How the elderly negotiate their environment. In: Byerts, T.O., ed. Housing and Environment for the elderly. Washington, D.C.: Gerontological Society of America, 1975. pp. 21-34. Pruchno, R.A., and Faletti, M.V. The Social World of our Elderly: Structure vs Function. Paper presented at the 36th Annual Meeting of the Gerontological Society of America, Boston, Massachusetts, 1983. 191 CHAPTER 14 MANPOWER IN NURSING HOMES: IMPLICATIONS FOR RESEARCH Carol Lindeman, R.N., Ph.D., F.A.A.N. Professor and Dean, School of Nursing Oregon Health Sciences University Portland, OR This paper presents an overview of mental health/ illness in the nursing home population as a framework for observations concerning the current manpower situation in nursing homes, as well as projections of manpower require- ments under a medical model assumption and under alter- native models. It also suggests research implications of the rapidly rising mental health staffing needs in the Nation's nursing homes. The paper is not an exhaustive review of the literature nor does it introduce new data. Rather, it at- tempts to highlight issues that interface Federal policy, mental health manpower requirements, and the nursing home population. Any discussion of the mental health/illness status of nursing home residents is confounded by the rapid change that has taken place in the Nation's health care delivery system and the demographics of our society. The number of Americans age 65 and older increased from about 4 million in 1900 to approximately 24 million by 1979. By the year 2030, an estimated 55 million Americans will be over 65. Furthermore, among the elderly, the pro- portion of those over 75 and those over 85 will continue to grow. By the year 2000, 45 percent of the elderly will be over 75 and 12 percent will be over 85; by 2040 more than half of the elderly will be over 75--more than the total num- ber of persons over 65 today. There will also be propor- tionally more women and more minorities among the elderly in the years ahead (Vladeck 1982; Kane et al. 1980). These statistics provide some sense of the magnitude of the growth expected in the population of nursing homes serving the elderly. About 5 percent of the elderly are currently in nursing homes (at any given point in time) and one in five, or 20 percent, of today's elderly population will be in a nursing home at some point in their lives (NCHS 1981). However, a number of groups other than the elderly also benefit from nursing home care. These include the mentally retarded, the chronically ill, persons recuperating from an illness, and others who require care but do not fit 193 into other parts of the health care system. Since data about these diverse groups of people are not available, we cannot accurately project the total number of persons that will require nursing home care in the future. Nevertheless, we can conservatively conclude that given the current health care delivery system, the demand for nursing home beds will continue to increase over the next decade. And although the majority of nursing home residents will have symptoms associated with mental prob- lems, their physical health problems will continue to be the primary focus for care. Manpower Requirements for Nursing Homes Numerous studies analyze the future manpower re- quirements for long-term nursing care for the elderly. The majority of these studies adopt a medical model as the basis for care. This approach to health care emphasizes acute rather than chronic care, diagnostic and treatment services rather than social and rehabilitative services, disease rather than health, and medical professionals rather than other health professionals. In a study assessing the requirements for medical man- power, Kane et al. (1980) estimate that the United States will require between 7,000 and 10,300 geriatricians by the year 1990. They conclude that geriatric medicine will be- come a specialty practiced outside of academic centers for the following reasons: 1. Medical care of the elderly requires a body of knowledge and skills that are very different from those of other medical care areas. The geria- trician must be a manager of such resources as the care environment including the use of various therapies. 2. A substantial portion of geriatric care relates to problems of geropsychiatry, especially dementia and depression. 3. The current unsatisfactory quality of care for the elderly requires community involvement. 4. The demand for geriatric services will require a positive response from the medical profession. 5. Geriatricians will be called upon as consultants or to provide care when an elderly patient's primary care physician does not have the expertise re- quired to continue to serve the patient. 194 6. The institutions in which the elderly will be housed will be diverse and removed from academic settings. Using national trend data, Kane et al. (1980) projected estimates of the need for academic geriatricians and prac- ticing geropsychiatrists. The researchers assumed that certain medical care activities could be delegated to other health care workers and adjusted their projections for geri- atricians to reflect three modes of delegation. Moreover, they based their projections for academic geriatricians on the assumption that they would handle both the under- graduate medical and undergraduate nursing curriculums. The researchers did not suggest the need for more physi- cians overall, but rather for a redirecting of a percentage of those in the system toward a specialization in care of the elderly. Two other studies which offer projections of personnel requirements for nursing homes are described in a report (USDHEW 1978) by an interdisciplinary panel of consult- ants. They provided lower- and upper-bound estimates of nursing personnel required for nursing homes. They based their upper-bound estimates on a formula of 20 registered nurses (RNs) per 100 residents in skilled nursing facilities (SNFs) and 5 RNs per 100 residents in intermediate care facilities (ICFs). The staff mix for SNFs was 10 RNs/20 licensed practical nurses (LPNs)/20 aides, or a 20 percent, 40 percent, 40 percent mix; and for ICFs; was 10 RNs/20 LPNs/40 aides, or a 14 percent, 29 percent, 57 percent mix. They based their lower-bound estimates on a formula of 9 RNs per 100 residents for skilled nursing facilities with a mix of 10 RNs/25 LPNs/25 aides, or a 17 percent, 42 percent, 42 percent mix. For ICFs their formula was 5 RNs per 100 residents with a mix of 10 RNs/20 LPNs/40 aides, the same mix as for the upper-bound criteria. The expert panel estimated a need for 2.5 percent of the nursing personnel to be geriatric nurse practitioners and for an additional nurse clinician (with a master's degree) for every 100 residents in SNFs and three nurse clinicians for every 100 residents in ICFs under the upper-bound projec- tions. For the lower-bound projections, the panel concluded that 2.75 percent of the nursing personnel should be geriat- ric nurse practitioners with 0.5 nurse clinicians per 100 residents for SNFs and 0.2 clinicians per 100 residents for ICFs. The panel's final report also summarized the system's dynamic approach to manpower planning. Estimating a 20 percent increase in nursing home beds, a 15 percent 195 increase in aggregate staffing levels, and a 10 percent increase in RN staffing from 1978 to 1990, there would be a net shortage of RNs available to work in nursing homes. Another manpower study which primarily focused on nursing manpower was reported by Flagle (1978). Flagle summarized a series of studies on staffing requirements of long-term care facilities. The research was conducted by a coalition of researchers from Johns Hopkins University and the Hospital Association of New York State. The primary purposes of the studies were (1) to analyze the care require- ments of a group of patients in a variety of skilled and in- termediate care facilities, and (2) to relate the process of care to the characteristics of patients. Results of these studies demonstrated distinct dif- ferences in patients in the various levels of care, parti- cularly as to degree of dependence. They also showed significantly less involvement of registered nurses in the long-term care setting compared to the acute care setting. In terms of professional and public policy, Flagle con- cluded that there was a need for a greater involvement of registered nurses in long-term care. His recommendation follows: One approach to an expanded nursing role is to have the geriatric nurse practitioner coordinate the many facets of care and patient life-style. The studies described have indicated a relative paucity of staff time devoted to coordination and planning of patient care. With multidisciplinary training, there is oppor- tunity for a significant contribution from nursing to enhance the rationality and humaneness of care. To carry this idea forward, we would need 10,000-20,000 practitioners in new positions to fill the gap. There has been considerable research analyzing the staffing of nursing homes, particularly as it relates to the mix of RNs, LPNs, and aides. Typical of these studies is one in which Beaver (1978) asked a panel of nurse educators to indicate which of 78 tasks that are frequently performed in nursing homes could be performed safely by which category of worker. The panel concluded that RNs could perform all 78 tasks, LPNs 73 tasks, and aides 53 tasks. Beaver then conducted a two-wave nursing home survey. In the first wave, 79 nursing homes with good reputations were con- tacted and one RN, one LPN, and one aide from each home were asked to complete a questionnaire noting who usually performed each of these same 78 tasks. In the second wave of the survey, 10 homes were visited and observations made of who actually performed the 78 tasks. Beaver's survey 196 data indicate that many of the tasks considered inappro- priate to the skill level of an aide or LPN were indeed usually done by them--even in nursing homes with good reputations. For example, Beaver reports that the task "start blood transfusion" is usually performed by a nursing aide in 4.2 percent of the homes; by an LPN in 3.4 percent of the homes; by an RN in 83.2 percent of the homes; and by various people in 9.2 percent of the homes. Another task, "prepare and give intravenous medications," is usually executed by a nursing aide in 1.4 percent of the homes; by an LPN in 20.7 percent of homes; by an RN in 64.1 percent of the homes; and by various people in 13.8 percent of the homes. What are the implications of studies such as the one conducted by Beaver? If a majority of nursing home resi- dents have symptoms associated with mental problems, why does the list of tasks invariably focus on physical care? Can care be reduced to a set of tasks to be performed? Is "pro- fessional judgment" an argument designed to perpetuate the past and maintain territorial boundaries that restrict prac- tice? Or is there understaffing and inappropriate delegation of tasks even in nursing homes with good reputations? If so, what margin of error or risk are we willing to accept in task delegation? If an aide can administer the right medication 79 percent of the time, is that adequate? Is 80 percent ade- quate? Can we have one set of standards for care in the acute sector and much lower standards in the long-term care sector (Flagle's question)? Research cannot provide answers to issues such as these, which represent questions of values and judgments. However, the research does clearly point out that we con- tinue to discriminate against the elderly in the health care system. Under the rubric of concern for cost, we promote standards of nursing care in nursing homes that are signi- ficantly lower than those in the acute care setting. (Vladeck 1982). Moreover, we offer a medical model approach to people who would be better served by some other model of care and we continue to use nursing homes for those who may not benefit from the care delivered (Avorn 1983). Models for Nursing Home Care Before discussing the research implications of man- power requirements in nursing homes, I want to review models for nursing home care other than the medical model 197 because the model for care determines all manpower decisions. One alternative to the medical model is the social model (Tolliver 1983). This model is a socially oriented sys- tem that provides a wide spectrum of care, with health care being just one component of that care. The social model en- courages independent community living, promotes health, encompasses a wide range of options and services, and largely depends on health professionals other than physicians. Another alternative described in the literature is a modified medical model (Gallard 1982). It is based on ob- servations which indicate that nursing homes have become the primary care centers for the aged mentally ill and that the medical care of nursing home patients often suffers because of minimal involvement by physicians. Thus it pro- poses improved psychiatric care and the use of nurse prac- titioners to augment physician care. The modified medical model calls for psychiatric screening of all patients ad- mitted for care, as well as involvement of psychiatrists in care planning and evaluation through consultation. The physician, however, would remain the primary provider and coordinator of care. A third model proposed in the literature could be labeled an alternative academic affiliation model (Vladeck 1982). This model proposes that affiliations be developed which link nursing homes with academic settings--the academic setting being a school of nursing, not a school of medicine. A fourth model that is frequently alluded to in the research literature is a behavioral or environmental model. In this model, the needs of nursing home residents are viewed as a response to the environmental setting; thus, their physical disability is only one of a number of variables affecting care needs. The research of Avorn and Langer (1982) illustrates the assumptions behind this model. The researchers performed a study of induced disability in nursing home patients, which they describe as follows: Many performance deficits observed in insti- tutionalized elderly patients may be the result of social and environmental factors rather than disease or the aging process. To test this hypothesis, 72 nursing home residents were randomly assigned to three groups for training in completion of a simple psychomotor task. In four training sessions, members of Group I (helped group) were given extensive assistance in completing the task; members of Group II (encouraged only) were given verbal encouragement but minimal assistance; 198 members of Group III (no contact) received no training sessions and served as the controls. Completeness of performance by Group II improved during the study, but that of Group I deteriorated significantly to a level even below that of the control group. Similar differ- ences were found in speed of performance. Percep- tion of task difficulty was greater and self-confidence less for Group I than for Group Il. The physical en- vironment of the long-term facilities can have impor- tant effects on the competence of elderly patients. Excessive infantilization of residents and overly in- trusive help in self-care beyond clinical requirements can lead to "learned helplessness" with further disability. Other research studies emphasizing the environmental and behavioral aspects of nursing home care include Lang- ston's (1981) study of how a reality orientation program affects confusion and disorientation; Paulman's (1982) report on reaching the confused and withdrawn through music; the report of Wiltzius et al. (1981) on the impor- tance of resident placement within a skilled nursing facility; and Matteson and Munsat's (1982) work using group reminis- cing therapy with elderly clients in long-term care facilities. A fifth model discussed in the current literature as an alternative to the medical model of nursing home care is a nursing model. Shields and Kick (1982) discuss this model for nursing home care. They state: This model recognizes nursing as the primary health care service in the nursing home, and places the nurse in a position of responsibility, authority, and ac- countability for the nursing and health services pro- vided to the residents. The nurse strives to promote, maintain, and restore maximum function and independ- ence in the health behaviors essential to everyday liv- ing; uses anticipatory guidance in working with the maturation and situational events that confront the older person and the family as they continue to grow and develop; and works with the older person and the family in modifying their environment to support health. Shields and Kick refer to other studies such as that con- ducted by Leslie (1981) on the use of nursing diagnoses rather than medical diagnoses in planning care in long-term care facilities. They also cite research by Linn et al. (1977) and Kaeser (1981) showing that the one variable consistently related to patient outcome in nursing homes was the number of hours registered nurses were on duty. The nursing model 199 these authors present is a primary nursing modality with delegation of some activities to nursing assistants. How do these various models of care relate to the complex issues surrounding manpower requirements in nursing homes? As I suggested previously, the model of care chosen will largely determine manpower requirements. For example, the medical model approach would put the burden on medical schools to change curriculums and create in- centives for geriatric practice. In contrast, the nursing model would place the greatest burden on schools of nursing to prepare registered nurses to fulfill primary nursing roles in nursing homes. The "environment-behavior" model would require greater numbers of psychologists, social workers, and therapists. If research is to be useful in helping for- mulate and then evaluate policy regarding nursing home care, particularly for mentally impaired residents, I suggest that research efforts explore models other than the medical model as the basis of nursing home care. I am convinced that we are discriminating against the poor, the elderly, women, and the mentally impaired (groups that are high users of nursing homes) with the medical ap- proach to care found in most nursing homes today. The current assumptions underlying care must be challenged if nursing homes are to be something other than human ware- houses and if the quality of life for nursing home residents is to improve. I say this with great conviction for I have seen the difference that freedom to explore other models of care can make. Several years ago, at an Oregon facility, nurses were concerned that a number of residents had been relegated to the status of "hopeless" and left bedridden or restrained in chairs hour after hour and day after day. These residents were controlled with medication and lived in almost com- plete dependency. The nursing staff felt that the residents could be rehabilitated to some degree, but not through the use of more medications or "illness" care. The hospital ad- ministrator agreed to an exploratory project in which these "hopeless" residents were transferred to a nurse-run unit--a unit in which daily assessments and planning were done by an interdisciplinary team headed by a nurse. Under that team, care focused on promoting health and independence. The residents were encouraged to care for themselves in terms of bathing, dressing, shaving, etc. Nursing personnel were there to support and encourage but not to "do" for the resident. The staff had to learn to deal with patient falls and imperfect shaves, but that was a small price to pay for a group of residents who now talked with each other, went 200 out for walks, and assisted with ward duties. it was close to a miracle to see people who had been tube fed for years learn again to swallow and eat regular food. When families once again began visiting, other social behaviors re- appeared. I remember one resident who, prior to transfer to the nurse-administered unit, had been restrained in a chair day after day. This resident not only took charge of his own care, but later left the hospital and got a job. The potential of care models other than the medical model is visible at another Oregon facility, the Benedictine Nursing Center in Mt. Angel, Oregon. The staff describe the frustrations of a medical model approach to nursing home care which forces a concern for medical diagnoses and illness care. Two members of that nursing staff with graduate preparation in mental health nursing have initiated an exercise, or movement therapy, program with Alzhei- mer's patients. Their success in decreasing medications and increasing interpersonal interaction and independence of those residents is awesome. These nurses are emphatic in their belief that physicians need to be available as consul- tants, but not as primary care providers. Research Implications Based on this review of the literature, I would set forth the following implications for research on manpower re- quirements in nursing homes: 1. We vitally need to test various models for nursing home care--models based upon an understanding of the unique requirements of this population rather than on tradition or professional territorial boundaries. 2. Researchers should develop a comprehensive plan of care for nursing home residents. Past efforts have been fragmented and at times uncoor- dinated. Research efforts must look at the total system of care and its requirements before jumping ahead to implement change. 3. We need public education designed to alter attitudes toward the elderly. Assuring an ade- quate number of well-prepared health profes- sionals to meet the complex health needs of the rapidly growing nursing home population cannot be done without a major investment of research and training dollars in all sectors that impact on manpower supply and utilization. Our whole 201 society needs to be better educated about the elderly and about the mental health issues common to that age group. Health professionals tend to reflect the values and attitudes of the larger society. If our society does not value or understand the elderly, particularly those elderly who are confused or show signs of cognitive im- pairment, it will be difficult to attract a large number of health professionals into that field. Attention to the schools in which health pro- fessionals are prepared is another arena for research. We need to explore educational approaches that will capture the best and brightest students for careers in care of the elderly. We need research aimed at the nursing home environment and its impact on health profes- sionals. Much has been written about employee burnout and the lack of rewards in this employ- ment setting. What work patterns, environmental changes, and staff development opportunities are required if we are to recruit and retain a well- qualified staff, including nursing aides, who represent the largest number of nursing home employees? We shouldn't overlook the role of the nurs- ing home administrator in setting the stage for quality of care. I remember some years ago in Wisconsin when we were debating whether nursing home administrators should be required to have high school diplomas--that this expectation might be unattainable and unnecessary prevailed. The impact of the top-level administrator is crucial for any organization. I know that the quality of care at the Benedictine Center is in large part due to the quality of the administrator, Sister Lucia, who knows the product she wants and knows how to instill her values and goals in others. The residents are important to her, but so are the employees--and so are the values that characterize that facility. The last research area I have identified is the need to develop a cadre of research scientists from the fields of medicine, nursing, psychology, social work, and health administration who will make it their career to probe for new insights into the issues of health and aging. It is unforgivable 202 that we know so little about a group of people that comprise such a large percentage of our population. Research monies (including "young scientist" awards and targeted research funds) are mandatory if we are to attract this new genera- tion of scientists. In summary, let me reiterate my major theme. The literature contains much research on manpower requirements and related issues surrounding the care of mentally impaired nursing home residents. To my mind, however, the most fundamental manpower issue is what model of care will prevail. Further research is required to explore models other than the existing medical model. When a more appropriate model is identified, research on how best to prepare health professionals can logically follow. Other research priorities include attracting scientists interested in studying the elderly, analyzing how to increase job satisfaction among nursing home employees, and changing attitudes about the elderly in our society as a whole. References Avorn, J. Biomedical and social determinants of cognitive impairment in the elderly. Journal of the American Geri- atric Society 31(3):137-143, 1983. Avorn, J., and Langer, E. Induced disability in nursing home patients: A controlled trial. Journal of the American Geriatric Society 30(6):397-400, 1982. Ballard, R.W. The trouble with nursing homes. Nursing Homes 72(4):307-311, 1982. Beaver, K.W. "Task Analysis of Nursing Personnel: Long Term Care Facilities in Utah." Doctoral dissertation, Brigham Young University. University Microfilms International, No. 7816191, 1978. Flagle, C.D. Issues of staffing long term care activities. In: Millman, M.L., ed. Nursing Personnel and the Changing Health Care System. Cambridge, Mass.: Bal- linger Publishing Co., 1978. pp. 227-236. General Accounting Office. The Elderly Remain in Need of Mental Health Services. Staff study. Washington, D.C.: General Accounting Office, 1982. Kaeser, L.A. "The Relationship Between Patient Care Expenditures and Quality of Care in Long Term Care Nursing Homes." Doctoral dissertation, Cornell University, 1981. 203 Kane, R.; Soloman, D.; Back, J.; Keeler, E.; and Kane, R. The future need for geriatric manpower in the United States. New England Journal of Medicine 24:1327-1332, 1980. Langston, N.F. Reality orientation and effective reinforce- ment. Journal of Gerontological Nursing 7(4):224-227, 1981. Leslie, F.M. Nursing diagnosis: Use in long term care. American Journal of Nursing 81(5):1012-1014, 1981. Linn, M.W. et al. Patient outcome measure of quality of nursing home care. American Journal of Public Health: 337-344, 1977. Matteson, M.A., and Munsat, E.M. Group reminiscing therapy with elderly clients. Issues in Mental Health Nursing 4:177-189, 1982. Paulman, L. Music: Reaching the confused and withdrawn through music. Aging 11:7-11, 1982. Shields, E.M., and Kick, E. Nursing Care in Nursing Homes. In: Aiken, L.H., ed. Nursing in the 1980s: Crises, Oppor- tunity, Challenges. Philadelphia: J.B. Lippincott, 1982. pp. 195-209. Tolliver, L.M. Social and mental health needs of the aged. American Psychologist 38(3):316-318, 1983. U.S. Department of Health, Education, and Welfare. Analysis and Planning for Improved Distribution of Nursing Personnel and Services, Final Report. Pub. No. HRA 79-16. DHEW, 1978. Vladeck, B.C. Nursing homes: A national problem. In: Aiken, L.H., ed. Nursing in the 1980s: Crises, Oppor- tunity, Challenges. Philadelphia: J.B. Lippincott, 1982. pp. 183-194. Wiltzius, F.; Gambert, S.R.; and Duthie, E.H. Importance of resident placement within a skilled nursing facility. Jour- nal of the American Geriatric Society 29(9): 418-421, 1981. 204 Additional Suggested Readings Beck, P. Two successful interventions in nursing homes: The therapeutic effects of cognitive activity. Geronto- logist 22(4):378-383, 1982. Haycox, J.A. Late care of the demented patient: The ques- tion of nursing-home placement. New England Journal of Medicine 303(3):165-166. Health Care Financing Administration. The labor supply question, by Horen, J.H. In: Long Term Care: Perspec- tives from Research and Demonstration. Vogel, R.J., and Palmer, H.C., eds. Washington, D.C.: U.S. Govt. Print. Off., 1982. pp. 7723-7744. Jones, P. Fine arts gallery in retirement center nurtures creativity. Aging, 1982. pp. 12-13. Novick, L.J. Senile patients need diverse programming. Dimensions, 1982. pp. 25-26. Pavkov, J.R., and Walsh, J. For nursing homes: A mental health charting instrument. Journal of Gerontological Nursing 7(1): 13-20, 1981. Solomon, K. Social antecedents of learned helplessness in the health care setting. Gerontologist 22(3):282-287, 1982. Vitaliano, P.P.; Peck, A.; Johnson, D.A.; Prinz, P.N.; and Eisdorfer, C. Dementia and other competing risks for mortality in the institutionalized aged. Journal of the American Geriatric Society 29(1 1):513-519, 1981. Weisberg, J. Creative intervention with severely mentally impaired nursing home residents. Nursing Homes. Vol. 6, 1983. pp. 14-16. 205 RESPONSE TO MANPOWER IN NURSING HOMES: IMPLICATIONS FOR RESEARCH Joyce J. Fitzpatrick, Ph.D., F.A.A.N. Professor and Dean of Nursing Frances Payne Bolton School of Nursing Case Western Reserve University Cleveland, OH I have been asked to respond to Dr. Lindeman's pre- sentation by adding some brief comments on research directions in manpower in nursing homes. First, let me acknowledge Dr. Lindeman's excellent analysis of important current issues in nursing home care. My remarks will serve to enhance some of the points already made. Before ad- dressing manpower in nursing homes, we must identify the projected needs of long-term care residents. In the future, our clients will be older; they will need more care; they will have less stable family relationships and yet they will de- mand more independence. Nursing homes will have to place greater emphasis on quality of living rather than prevention of illness. While projections indicate that we will need more than the current 1.5 licensed health providers per 100 patients, we are faced with a critical question. How can we do more with less? Clearly, we need to improve the quality of care provided. Improved nursing home care will require care providers to have greater assessment skills, psychiatric skills, and re- habilitation knowledge. What research is necessary to accomplish this task? Three areas of need can be identified: l. Preparation of staff 2. Practice or clinical care and 3. System dimensions. First, what are the research needs in the preparation of nursing home manpower? We must examine continuing edu- cation models and other more creative educational en- deavors. Staff should be encouraged to take continuing education courses. Professional collaboration in education may also be strongly indicated. When these new educational approaches are initiated, they will need to be formally evaluated so that we can maximize our use of resources. Research on educational dimensions, approaches, and techniques in health care is sorely lacking. The literature 206 reveals one-time studies mainly undertaken to fulfill requirements for advanced degrees. Practice or clinical care research dimensions in nursing homes is also extremely important. The assumption here is that care providers will experience more job satisfaction if the care they provide is more effective. Thus, there is an expected indirect effect on nursing home staffing. Research dimensions in clinical care include the following: l. What are the ethics of long-term care, and who should decide? 2 What is the process of clinical decisionmaking? 3 What basic care dimensions, e.g., clothing, equipment, empathy, make a difference in increasing older persons' needs for comfort? Ha How do we ensure continuity of care? System components to be considered in research related to nursing home manpower include alternative models of care, continuity of care, and cost ratios. Home-based alter- natives must be explored. The newly introduced prospective reimbursement systems must be evaluated for effects on both care and cost. Substitute providers, including family members and volunteers, may also be integrated into the system. We hope this capsule view of research needs will pro- vide a perspective on important issues with respect to man- power requirements in nursing homes for the next decade. Perhaps it will also help us all refocus our research and shift our priorities toward these new horizons. CHAPTER 15 THE DEVELOPMENT OF A RESEARCH CENTER IN A NURSING HOME: MODEL FOR FUTURE SCIENTIFIC INQUIRY OR INSTITUTIONAL ANOMALY? Fred D. Hirt, Executive Director Miami Jewish Home and Hospital for the Aged Miami, FL and Elliott J. Stern, Associate Director Miami Jewish Home and Hospital for the Aged and Director, Stein Gerontological Institute Miami, FL In 1976, the Miami Jewish Home and Hospital for the Aged (MJHHA) formally organized a gerontological institute as the teaching division of the home. Today, endowed as the Stein Gerontological Institute, the institute serves as the administratively distinct training, research, and planning division of MJHHA. This distinct institute format reflected a growing awareness that the nursing home/hospital base could and should serve as a nucleus for a variety of service delivery programs for the elderly and basic and applied gerontological research. Central to our thinking in establishing the institute was our desire to improve the quality of care-—ours and that of other long-term care institutions--and to refine approaches to care for community as well as institutionally delivered services. To exemplify the role of an institute as part of a long-term care facility, I will focus my comments on the re- search division, which conducts basic and applied research programs focused on clinical and behavioral problems in the aging. The institute's other functions as the nucleus of training activities, program evaluation, management infor- mation system development, planning, and consultation have been important to both our institution and to the com- munity-at-large. The research function, however, has done the most thus far to extend basic understanding of human aging and its effects on health, behavior, and long-term care services. I will address the process by which we came to establish the Stein Gerontological Institute (SGI), including the specific questions we had to answer both to ourselves and to 209 others in so doing. First, we had to convince our board members that the establishment of an institute was in the best interest of MJHHA. The fact that we were motivated by a desire to improve the quality of care was one area that our board could understand and support. As Dr. Robert Butler began to articulate the basic concepts for the estab- lishment of an education and research facility within the nursing home (what is now commonly called a "teaching nursing home"), the fact that we had gone ahead already with the formulation of an institute became a source of tremendous pride to our board members. It has, as a result, become even easier to create additional support for ven- tures within the Stein Gerontological Institute. The second critical concern of the board was the question of funding. One could argue that in building a research center and facilities that do not already have the technology and support systems of a university-based cen- ter, we are drawing precious resources away from our al- ready overtaxed scientific efforts and placing additional burdens on a service-providing institution. This question glosses over the distinction in approach and strategies between a university-based or private research center on the one hand and a research institute operating from a long- term care base on the other. We believe that it is most cost-effective to initiate and address applied research issues that deal with questions of patient care, management, and rehabilitation of the elderly from the locus of the institution that knows the most about such services. When the research that is to be conducted attracts Federal or foundation dol- lars, the institution conducting the research will normally recover the administrative costs of managing the research through an indirect cost rate while being able to conduct the research in a cost-effective manner. We were able to show our board that the conduct of research within MJHHA would benefit us without shifting resources away from our patients. A third step in the process of conducting appropriate research from a long-term care base is the setting of proper goals and objectives. We believe the research we have con- ducted in the field of mental health has been in response to proper goal setting. Mental health in general has borne the stigma of being a poor second cousin to the physical, bio- logical, and even the behavioral sciences. With few excep- tions, major mental health initiatives have been developed as offshoots of larger interdisciplinary behavioral and social science institutions. As such, the initiatives often were embedded within centers affiliated with large universities. We posit that a university-centered approach is not the only 210 model, nor the most effective model, for initiating and addressing critical issues in mental health research. An institution such as ours, when formulated around specific and circumscribed goals, has a very important role to play. The appropriate study of concrete care-related problem areas is distinct from a recent phenomenon found in some geriatric facilities. Many such centers now have a research institute, the primary goal of which is to gain prestige for the institution. Our approach has been to define research in relationship to our institutional resources and commit- ments. Thus our research evolved from issues and problems defined in the Douglas Gardens Community Mental Health Center or in our specialty outpatient mental health geriatric center. The clinical issues being addressed through direct services raise research questions of major importance for future successful treatment and service delivery. It is the mental health requirements of the long-term care institu- tion that help that institution formulate its research goals. When there are no appropriate research questions, the re- search program and the staff have no meaningful role in the institution. Therefore, what distinct attributes should a mental health research program based in a long-term care facility have? We believe that the research program and research team should be multidisciplinary. Universities, centers for research, and even gerontology centers generally try to garner resources to support the largest amount of research feasible. They tend to give too little, if any, attention to mutually set research goals and missions. In the case of the university, the nonspecific goal of fostering research must be supplemented by the role of teaching students everything currently going on in the field. In the case of the research or gerontology center, the research tends to reflect the in- dividual pursuits of the assorted research scientists and scientific consultants and must also meet the needs of the center's clients, which are often Government agencies. The researchers bring their own perspectives, methodologies, and research interests to such centers. Other than meeting the institution's needs to foster research, their goals tend to be self-serving--the creation of their own professional iden- tity. Researchers in these situations tend to individualize the conceptualization of a problem, the methodological ap- proach, and occasionally even the choice of a problem. This is often an advantage in newer fields and in areas where unique conceptualization is required. What is lost in this process, however, is the choosing of research goals because they are important to health practitioners, their clientele, or the public who want a complex practical problem solved. While there are exceptions to this general state of af- fairs, the trend away from collaborative scientific efforts in the social sciences is readily discernible (see Dunn 1982). Individual scientists are rewarded for conceptualizing unique problems and developing unique procedures and measures to address them. They are not rewarded for adopting a multi- disciplinary approach in which many professional scientists work as a team to solve one problem or a set of related problems. This pursuit of individual goals, even appropriate goals, results in fragmentation. Thus, while this approach may have advantages for students, for fostering educational and organizational diversity, and for producing new lines of investigation, it does not necessarily provide the greatest opportunity to solve a defined problem. We propose that in applied research, which in our case is research related to the delivery of nursing home services, it will be more cost- beneficial and more effective to work from the base of a service provider using a multidisciplinary team. In this process, all key administrative and support staff can be readily convinced that they will benefit from the research that is conducted; they become a critical part of the re- search team. Another distinction between our type of research institute and that of the many acute care facilities where the research focus is connected to individual diseases, con- ditions, and organ systems that are myriad and highly dif- ferentiated, is that our focus is on a relatively limited set of problems directed at the basic human functioning of the aging individual. We attempt to articulate care, manage- ment, or behavioral goals in a very concrete way. Because of this emphasis, long-term care institutions such as ours can, under some conditions, be singularly successful in defining what they would like to look at systematically. They can foster a multidisciplinary approach to a problem where critical human and technological resources are or- ganized around a specific goal or particular kind of prob- lem. We can and do look at how problems arise from and can be resolved within a community setting that includes universities, hospitals, and service institutions. The question then arises, are these conditions conducive to the establishment of a research program? Our answer is a qualified yes. The advisability of such a program may de- pend on what model of research reflects the base institu- tion's history, organizational structure, and orientation. One such basic model we call the "value added" model and 212 the other, which we believe the Stein Gerontological Insti- tute exemplifies, we call the "synergistic" model. In the '"value added" model, the research staff are relatively autonomous. They may well be studying problems connected with aging and the delivery of care services, but their raison d'etre depends on the quality of their scientific product and their success in obtaining external funding. The grants as such may not be related to the immediate needs or goals of the institution. Therefore, the program may often be viewed with a certain degree of aloofness by the manage- ment of the nursing institution and the providers of care. The research program might enhance the prestige of the host institution without enhancing the care provided or even documenting behavior in the host institution. Furthermore, the specific objectives of the researcher may conflict with those of the care provider, requiring the management of the host institution to help broker conflicting goals so that the integrity of the research is maintained while patient care and patient rights are not compromised. The synergistic model (the "dirty hands" model), on the other hand, requires researchers to participate not only in the research but in the day-to-day operation of the facility. The first step in this process is the participation of the patient care staff with the research staff in the setting of the research goals. The researchers act as the conceptual consultants in such diverse areas as the development of management systems; the design of care delivery compo- nents; the characterization of patient conditions, care needs, and activities; and the design of evaluation studies and monitoring reports. The research agendum is strongly influenced by the organization's mission and concerns, but also reflects the individual scientific orientation and meth- odological perspectives of the researcher. The organization may request a mental health outcome study, but the scientists establish the methodologies employed, the results produced, and even the specific research questions as they confront and analyze the problem. Thus, the organization defines what the research should be but not how to do it. This approach is heavily oriented to so-called applied research. In our view, the distinction between "pure" or "basic" research and applied research is often misappropriated in defining the way in which research in the social and be- havioral sciences should be approached. On the one hand, basic research often gets confused with "bench" (i.e., laboratory) research, while applied research becomes con- fused with nonexperimental, unreliable, and nonvalidated 213 approaches. Our research is applied in that it is "practice driven" and not conducted in a laboratory setting. However, with regard to the types of problems we choose to inves- tigate, we disagree with the contention that basic research must precede applied research. Further, we insist that our practice-driven research meet the same standard of repli- cability and testability as our scientific research; in that sense, it is equally "pure" or "basic" to our understanding of the phenomena that drives it. This is the approach we have followed at the Stein Gerontological Institute. As an institution, our goal is to answer the question, "How do we keep chronically ill, and often mentally im- paired, elderly persons functioning either in the community or within our various residential facilities?" In pursuit of short- and long-range answers, we bring together persons from various disciplines: physicians, social workers, nurses, research psychologists, behavioral engineers, computer experts, pharmacologists, clinicians, and even our adminis- trators. Our care facility provides the locus for defining scientific problems in the context of ongoing care needs. Because of the involvement of each of these staff members in the daily activities of the organization, their imagination and their scientific/problem solving creativity is nourished on a continuing basis. An example will illustrate my point. The Miami Jewish Home and Hospital for the Aged recently decided to expand its institutional and community-based facilities by replacing a set of existing structures with two new buildings. But in the planning process, we became concerned with the many problems we would have in relocating our residents and in providing continuous service to them. Two of our psycho- logists saw the opportunity to develop a research program which could empirically separate the behavioral, psycho- logical, and biological effects of physical relocation from those of environmental changes (effects which to date have not been adequately separated in the voluminous literature on relocation) (see Pruchno 1983). Our administrative staff and board concurred because they saw the relevance of such data for providing the best patient care possible during this period of stress. In response to this concern, the scientists rethought the research design and developed additional methodologies and measures to look at individual resident responses to the relocation. In these ensuing dialogues, ad- ministrative and lay persons who previously had no idea of the existing literature on the effects of relocation became familiar with the literature; working with the architects, they redesigned the facilities to minimize the relocation 214 trauma on individual residents. This change in plans, in turn, provided additional opportunities for the researcher to consult with the architects, the medical director, directors of social service and nursing, and various administrators. These elaborate interactions finally translated into a proposal that we submitted to the National Institute on Aging. We believe that the exchanges which had to ensue for the project to gain organizational support contributed to the proposal's subsequent acceptance by NIA and the recog- nition of its general applicability to other care settings. It was as if exposure to our specific setting gave our re- searchers the chance to look at the project in a more com- prehensive framework. This example is not an isolated one. The benefits of being required to do something within the time frame of the institution and to maintain a dialogue as a member of a larger team have carried over to our community-based field research. We recently conducted a mental health outcome study (Smyer and Gatz 1983) which involved the staffs not only of the Stein Gerontological Institute but also of the Douglas Gardens Outpatient Mental Health Center, the first freestanding geriatric mental health center to be developed under the auspices of a nursing home in the United States, and the Douglas Gardens Community Mental Health Center, located in an area with one of the highest concentrations of elderly residents in the nation. These health centers not only provided excellent settings for this research but, in fact, they required such a study in order to further their treatment goals. Both cen- ters are committed to treating significant psychological and social dysfunctions in order to help the elderly maintain the highest possible level of functioning and quality of life in the community. In the course of the study, treatment staff, administrators, researchers, and persons with special methodological expertise worked together to formulate the evaluation design, specific measures, and interpretation of results. Not only did this research reinforce our presump- tion about the effectiveness of certain approaches to treatment, it also led us to reevaluate our approach to clients who dropped out of treatment. In doing the study, we also became aware of the dif- ficulty in setting benchmarks of functioning for our diverse clinical populations and the need to more clearly define treatment modalities. Nevertheless, we were constrained by the actual therapeutic practices in our mental health centers, which are highly eclectic. We could have chosen to set up control studies oriented towards tighter specification 215 of treatment variables, but for our initial study of mental health outcomes, we elected to accept what the clinician believed worked as an operational reality. The researchers in our institute become involved in the interstaff-interresident relationships and must accept the economic necessities of our institution and our inability to justify highly theoretical research. But for problems such as we have chosen--bereavement, the economics of activities in long-term care, product design to help maintain the highest levels of functioning of the elderly, interactions and perceptions of elderly living in a congregate facility, clini- cal and behavioral studies of severely impaired elderly, and assessment of changes in mental functioning and their im- pact on physical functioning and adaptation--a setting such as ours may provide the most effective milieu in which to raise and answer these questions. We believe that institutions which aim at improving the social, economic, environmental, and health conditions of the aged in a concrete way can also be highly suitable for the conduct of scientific inquiry. We must, however, avoid the trap of the false teaching nursing home model, in which academic researchers are simply grafted onto the staff of a nursing home or geriatric center. Too many of the proposed hospital, medical school, and nursing home affiliations are of this type. The "tail wagging the dog" model loses the unique strength of an integrated research effort founded on institutional needs and priorities. Our researchers have accepted the constraints of our institutional goals and mission and, within those constraints, have proven to be creative and productive. We believe this model which stresses the interpenetration between concep- tualization of a problem, the actual research process, and the implementation of that research should be a high priority in programming for the National Institute of Mental Health. As we stated earlier, the hallmark of a successful research effort is not the establishment of a center per se, but the context in which that center is established. More attention to this critical aspect of research activity will yield improved research and develop a new breed of scientists to carry on the necessary applied clinical and behaviorial mental health research which this field so urgently needs. Specifically, we have found that the synergistic model in which a long-term care facility hosts a research center has the following benefits: 216 1. The ongoing interrelationships among researchers, clinicians, and direct service staff allow for the setting of mutually acceptable research goals, as well as for shifts in direction as institutional needs change and as opportunities present themselves. 2. The board of the long-term care facility can and should be involved in defining the research goals, thereby giving them a sense of commitment to the research program. 3. The clinical and direct service staff know from the beginning that the research program is an attempt to help them to do their jobs better. They have no reason to fear the researchers. They, too, gain pride of "ownership." 4. From the beginning, the administrative team establishes its ultimate responsibility to manage the research process (precluding, we hope, ego- centricity on the part of the researchers). The re- searchers, likewise, know from the inception that they have full institutional support. Because of the nature of outside research funding, all parties also know that they have a responsibility to protect the integrity of the principal investigators and their research product. 5. Clearly everybody--the researchers, the board, the institution, and the staff--"owns" the research. What are the special characteristics of a research staff that are best suited to perform in this type of setting? Clearly, it takes a special kind of person to work in an environment in which daily problems must become a focus of inquiry and which does not have the depth of university resources. We have found that while other research insti- tutions have more scientific resources at their disposal than we do, researchers are attracted to our institution precisely because it is easier to decide what they are and are not going to do. There is a liberating effect on the research personnel at our institute. Individuals who come to a setting of this sort are less interested in the laboratory per se than in the problems they are asked to research. The final question I would like to examine is how to fund an institute such as ours in a manner that will guarantee success in meeting institutional goals. Fun- damental to our success is the fact that the institute was initiated by a substantial endowment from Louis Stein. A solid financial foundation guarantees to all participants in our research process that our commitment to research is 217 permanent and serious. It guarantees freedom to the re- search staff to explore new research directions; it means that our concerns are not time limited; and it allows for some calculated risk taking. However, because the endowment is not adequate to fund major long-term studies, the quality of the research design and the focus of the research must be of enough general interest to generate external funds. This forces the researchers to seek the approval of a wider audience and community of peers before launching major endeavors. It also encourages cooperative relationships with the other major actors on the research scene--the universities, medi- cal schools, hospitals, Government agencies and, more re- cently, corporate research centers. Additionally, the administrative staff of the host facility must make a commitment to communicate and to broker. Because of the multidisciplinary nature of the research, internecine warfare between researchers, clini- cians, and administrative professionals will occasionally break out. Therefore, the management team must create and maintain an environment that fosters open communi- cation and staff integration. Louis Stein articulated a proper mission for our insti- tute when he stated, "Longevity brings with it a need for enjoyment, a need to create something to look forward to. The challenge, as we see it, is not simply to create years in which large numbers of elderly can live on and on, but to qualify those years as an extension of a rich, productive life. The ultimate answer lies in a long-term approach with its foundation in careful planning, research and training. This is the ultimate service we can offer to our elderly" (Stein 1981, p. 2). Thus our benefactor laid the foundation for an institute which, by design, created a system within which the fruits and products of the research efforts can (1) be disseminated to the field through training programs, and (2) directly affect the planning and practice of care within the institu- tion. This design does not envision research as an independ- ent and objective method unencumbered by the realities of everyday practicalities. Our researchers face numerous strains and stresses as they develop their agenda for clinical, behavioral, economic, and advanced systems research--directed toward aging as an issue of life, and not as an abstraction. 218 References Dunn, W.N. Knowledge: Creation Diffusion, Utilization. Beverly Hills, Calif.: Sage Publications, March 1982. pp. 293-326. Pruchno, R.A. Health and Functioning of Relocated Long- Term Care Aged. Grant No. | ROI AG 04068-0l. National Institute on Aging. Bethesda, National Insti- tutes of Health, 1983. Pruchno, R.A.; Boswell, P.C.; Wolff, D.S.; and Faletti, M.V. A community mental health program: Evaluating out- comes. In: Smyer, M., and Gatz, M., eds. Mental Health and Aging, Vol. VIII: Programs and Evaluations. Beverly Hills, Calif.: Sage Publications, 1983. pp. 41-62. Smyer, M., and Gatz, M. Mental Health and Aging, Vol. VIII: Problems and Evaluations. Beverly Hills, Calif.: Sage Publications, 1983. Stein Gerontological Institute. Louis M. Stein Commemora- tive monograph. Miami, Fla.: Stein Gerontological Insti- tute, 1981. 219 CHAPTER 16 MENTAL HEALTH NURSING: RESEARCH IN NURSING HOMES May Hinton Wykle, Ph.D., R.N. Associate Professor Psychiatric/Mental Health Nursing Frances Payne Bolton School of Nursing Case Western Reserve University Cleveland, OH Geriatric mental health has become an issue of national importance for at least two reasons: (l) the phenomenal rowth in the numbers of aged persons in this country and 2) the paucity of professionals prepared to provide mental health services to an aging population. Today one out of nine (25 million) Americans is age 65 or older. Jarvik (1982) estimates that by the year 2030 there will be 13 million el- derly persons with mental illness. This alarming figure will prevail unless we identify the at-risk elderly for mental ill- ness and develop a program to promote mental health among the aged. In the past, aged persons were neglected by mental health professionals. Today because of the magnitude of mental problems in nursing homes, we see heightened pro- fessional interest in the elderly and efforts to increase the knowledge base of health care providers through research. For example, despite an alarming rise in the incidence of behavior problems among the elderly, nurses lack the knowl- edge to understand and design measures to manage these behaviors. Historically, the aged seldom have been chosen for treatment by mental health professionals. Moreover, most students in the health professions have not been required to work with aged persons as part of their supervised training experience. They have had few clinical opportunities, parti- cularly in nursing homes, in which to develop the sensitivity, competence, and satisfaction that comes from working ef- fectively with elderly persons. Consequently, most profes- sionals are reluctant to work in geriatric mental health, much less concentrate their research efforts in this area. Within this vacuum, the myth persists that elderly people cannot benefit from psychiatric treatment; thus pro- fessionals do not address the real issue of inadequate mental health services. For many years, psychiatric consultation has been the major response to mental health problems in 221 nursing homes. This type of service, while helpful, is often crisis oriented and fails to meet the ongoing needs of either the staff or residents. Until recently, elderly persons with mental disorders were placed in State hospitals and relegated to the back wards where nursing care was primarily custodial. Then came the move to depopulate the State hospitals and to re- turn as many patients as possible to the community. In the subsequent deinstitutionalization, many elderly patients with chronic mental illness were sent to nursing homes. In fact, while the percentage of total institutionalized patients in State hospitals decreased from 39 percent to 20 percent between 1950 and 1970, the percentage of patients in nurs- ing homes increased from 19 percent to 40 percent (Spiro 1982). These nursing homes have been referred to as "little State hospitals" or "backyard mental institutions" (Collins et al. 1967). By 1969, 75 percent of the aged mentally ill were in nursing homes compared to 53 percent in 1963 (Kahn 1975). Thus, nursing homes have become a primary source of care for elderly persons with chronic mental illness. There is an urgent need for clinical research in nursing homes that will address practical questions generated from nursing care of residents. Increasingly, caregivers seek to know how they can improve their ability to work with aged residents who have chronic mental disorders. For example, what should one do for the confused elderly woman who cries to get out of bed and, as soon as she is up, cries to go back to bed; or the elderly gentleman who refuses to eat be- cause he believes that he cannot afford the food. Frust- rated by their own feelings and countertransferences toward the residents, nursing staffs face the awesome task of pro- viding care with few expert resources available to them. Clearly, clinical research activities have not kept pace with the mental health needs of residents, and mental health services to the elderly are often very uneven. We do not know what behaviors to expect from elderly persons because people are living longer than ever before, but we do have the opportunity now to study those behavioral changes that commonly occur in the elderly. What is needed is a sound, interdisciplinary clinical research focus on mental health problems confronting nursing home residents. 222 Review of Nursing Literature Pertaining to Mental Health Research in Nursing Homes Only those studies pertaining to the mental health of the elderly that were conducted in nursing homes and re- ported in the nursing literature are reviewed here. To eval- uate mental health nursing research in nursing homes, we conducted a Medlars computer-generated search and a 20- year manual search of several major nursing journals includ- ing Nursing Research, Research in Nursing and Health, Journal of Gerontological Nursing, Perspectives in Psychi- atric Care, and The Journal of Psychiatric Nursing and Mental Health Services. We also identified relevant re- search reports from Cumulative Index to Nursing and Allied Health and Psychological Abstracts. Summary of Past Reviews In a review of gerontological nursing literature from 1955 to 1965, Basson (1967) identified 438 articles pertain- ing to the elderly, of which 52 were research articles, 34 were empirical studies, and 13 were research summaries. Basson did not identify studies of mental illness per se, but more than 300 of the references concerned the psychosocial needs of aged patients. Many of these articles mentioned depersonalization and disorientation as secondary disorders. None of the research articles was identified as a clinical re- search study conducted in a nursing home and little of the research was based in a theoretical framework. Gortner and Nahm (1977) did a more recent overview of nursing research, but did not list gerontological nursing as a separate research category. They did, however, cite some relevant studies such as Schwartz's (1964) study of the psy- chosocial needs of elderly outpatients and her classic de- scription of the aged ill. They also cited Putnam's (1972) study of the deliberate use of the nursing process to enhance psychosocial functioning in the aged. Based on their over- view, Gortner and Nahm concluded that more studies of the aged population are needed because of the elderly person's vulnerability to health problems. Gunter and Miller's (1977) review of gerontological nursing research failed to uncover any research concerning the promotion of mental health in the elderly or prevention of mental disorders associated with aging. They reported 29 studies on the psychosocial nursing needs of the elderly, none of which were conducted in nursing homes. Gunter and Miller recommended that the management of patients with 223 chronic or senile brain syndrome in nursing facilities and other institutions be investigated. The Kerr-Mills Act of 1960 provided public funds for the transfer of elderly mental patients to nursing homes. Anderson (1977) reviewed several studies concerning these transfers and the patients' subsequent adjustment. She dis- cussed the important issue of how and where to treat the mentally ill aged and whether or not they should be segre- gated in nursing homes. Her review of the literature re- ported Stotsky and Rhett's (1967) study of psychopathology in psychiatric patients who were successfully placed in nurs- ing homes. They cited some advantages of nursing home placement for elderly mental patients--i.e., smaller and more intimate units than in the State hospital wards and less stigma associated with the nursing home. They saw as a dis- advantage the unavailability of psychiatric resources and the need to return residents to mental hospitals when their symptoms became severe. Another study cited by Anderson concerned nurses' perceptions of the adjustment of patients in nursing homes, which found that nurses believed it was easier for mental patients who had been previously hospital- ized to make the adjustment than for persons admitted to a nursing home from the community (Collins et al. 1967). Sills (1977), in a review of psychiatric nursing research from 1952 to 1977, cited only two studies involving the aged mentally ill. Neither study was concerned with nursing home patients. Sills noted that studies on aging were be- coming more frequent. Brimmer (1977) presented three reviews of geriatric nursing publications at 5-year intervals. Out of 379 articles about the aged published in 1966, 40 percent were concerned with institutional care, nursing homes, and old age homes. In 1971, 63 percent of 196 articles pertained to geriatric nursing, most of them including references to institutional care of the aged. In 1976, 27 percent of 416 articles con- cerned geriatric nursing; of these, 42 percent were on insti- tutional care. Again, none of the articles concerned men- tally ill aged persons in nursing homes. O'Toole (1981) reviewed theory-based research in psy- chiatric nursing. Her review of the literature covered 71 articles published between 1970 and 1981 in five prestigious nursing journals. None of the studies on mental illness specifically concerned the elderly or nursing home resi- dents. The majority (70 percent) of the studies focused on practice, reflecting a change from the past focus on the practitioner. Two-thirds of the practitioner studies investi- gated attitudes and openness of staff toward mental illness. 224 O'Toole also classified the psychiatric nursing studies ac- cording to the four categories of theory level developed by Dickoff and James (1975). She found that the majority of the studies could be classified as level 4, which represents a more sophisticated research approach to nursing studies. While this finding is encouraging, O'Toole's review demon- strates again the paucity of research on the mental health needs of the elderly. It appears that mental health research among the aged, especially those in nursing homes, is not a high priority in the nursing profession. Wolanin (1983) reviewed clinical geriatric nursing re- search from 1952 to 1982. She cites an earlier review by Kayser-Jones (1981) of 44 articles on gerontological nursing, of which 12 had a clinical nursing focus, although none was specifically related to geriatric mental health. In one study, Wolanin (1976) studied 30 confused elderly residents in a nursing home to determine what behaviors led to the label- ing of confusion by staff. She found that residents with in- accessible social or cognitive behaviors were likely to be labeled as confused. Current Review of Nursing Studies The review of nursing literature presented in this sec- tion consists of 13 studies published in nursing journals from 1966 to 1982. One study was done prior to 1970, six be- tween 1975 and 1980, and six since 1980. Stotsky and Rhett's (1966) study mentioned previously on the changing attitudes of nursing home staffs toward the mentally ill was part of a larger study of nursing homes in Boston that was funded by the National Institute of Mental Health. The authors categorized nursing homes according to their success or lack of success as placements for elderly patients from mental hospitals. (Placements were judged unsuccessful if patients were returned to a psychiatric hos- pital, successful if they remained in the nursing home at least 6 months.) The researchers used the Opinions About Mental Illness Scale (Cohen and Struening 1962) to deter- mine attitudes of nurses toward the mentally ill. Scores measuring authoritarianism, benevolence, and social restric- tiveness of nurses were found to be significantly different between the successful and unsuccessful nursing homes; when age was controlled, however, only social restrictive- ness scores were significantly different between the two groups. Simms, Jones, and Yoder (1982) studied patients in nursing homes to discover what factors characterize the ad- justment of older persons who do well in nursing homes. A 225 purposive sample of 50 individuals was selected from two nursing homes, a sectarian rural and nonsectarian urban home. Data were collected using a 122-item patient ques- tionnaire. Fifty-one percent of the patients received high adjustment scores, with the greatest percentage of high ad- justment scores found among the young-old (ages 62-69); the lowest adjustment scores were obtained by persons ages 70-79. Putnam (1973) examined nurse awareness of the psycho- social functioning of aged patients in a nursing care unit of a home for the aged. The staff rated the psychosocial func- tioning of patients and completed a checklist of patients’ interests. These measurements were compared with the pa- tients' own reports of their daily activities. Results demon- strated that staffs' and patients' ratings of the residents’ psychosocial functioning were not significantly different. Francis and Odell (1979) did a study of secondary loneli- ness (the reaction to separation from persons and things in which one has an investment) among 42 residents in a home for the aged. Using the Schedule for Measurement of Lone- liness and Cathectic Investment, the residents, who ranged in age from 62 to 92, were found to have a mean score lower than persons in four previous studies of loneliness who had experienced recent separations. Yet only four (9.5 percent) of the surveyed residents actually reported experiencing loneliness since coming to the home. In another study on loneliness in the elderly, Rainwater (1980) attempted to relate the quality of nursing home care to the onset of loneliness. Eight women were surveyed from two residential facilities, one of which the researchers judged to provide "good care" and the other "insufficient care." They found significantly less loneliness in residents of "good care" versus "insufficient care" residential facilities. Goldberg and Fitzpatrick (1980) investigated the ef- fects of participation in a movement therapy group on mo- rale and self-esteem among institutionalized aged persons. A control group participated in the usual treatment pro- grams at the nursing home while the experimental group participated in a series of movement therapy sessions. The movement therapy group members demonstrated greater improvement in their total morale and self-esteem scores than did the control group. Gray and Stevenson (1980) used group therapy as a form of resocialization for 17 elderly residents in a 200-bed nurs- ing home. Their objectives were to increase personal inter- actions of group members in order to increase their mental 226 alertness and orientation. Three groups suffering varying levels of confusion met weekly for 4% months. All three groups showed a progressive increase in the number of verb- al interactions during the period of therapy. Puhl and Fuller (1980) studied the morale of 50 resi- dents in a home for the aged. They examined the relation- ship of the residents’ health at admission, income, perceived choice within the institution, and social interaction and four indices of morale. Significant multivariate effects were found for all morale dimensions. Choice within the institu- tion and social interaction had the greatest impact on morale. Hogstel (1979), Lohmann et al. (1982), and Voelkel (1978) all studied reality orientation as an intervention for elderly residents in nursing homes. Voelkel compared the effects of reality orientation and resocialization groups on 115 confused elderly residents using the Short Portable Men- tal Status Questionnaire and the Physical Self-Maintenance Scale. Using a four-cell experimental design, Voelkel found that the participants in the resocialization group showed a significant improvement over the reality orientation groups. Hogstel (1979) developed an instrument to measure confusion and found that reality orientation had no signifi- cant impact on the degree of confusion in elderly patients. Lohmann et al., on the other hand, showed an improvement in mental status test scores of residents receiving reality orientation therapy over those residents who did not partici- pate in the treatment. The nonparticipants also showed a decrease in life satisfaction. Dennis (1976) investigated the use of resocialization therapy to decrease depression and increase life satisfaction among elderly nursing home residents using a no-treatment control group and two experimental groups. The first ex- perimental group received special attention while the sec- ond experimental group received resocialization therapy. Zung's Self-Administered Depression Scale scores indicated a decrease in life satisfaction for the resocialization group. This result is opposite to the outcome of resocialization group therapy found by Voelkel. Robb, Boyd, and Pristash (1980) found that elderly male nursing home residents responded more to a puppy than to a bottle of wine or a plant. The researchers measured changes in smiles, verbalization, open eyes, and leaning to- ward the stimulus. The 13 studies reviewed here pertaining to geriatric mental health can be classified using Dickoff and James’ (1975) four categories of theory level as O'Toole (1981) did 227 in her research review. Given the dire need for clinical research in mental health nursing, studies in all four cate- gories are necessary to promote change in care that will im- prove the quality of life for nursing home residents. The 13 studies can be classified as follows: » Level I: Factor isolating--descriptive "Adjustment of older persons in nursing homes" by Simms et al. "Long-term residence and loneliness: Myth or reality" by Francis and Odell. "Nurse awareness and psychosocial functioning in the aged" by Putnam. ° Level II: Factor relating--descriptive with two or more variables "Changing attitudes toward the mentally ill in nursing homes" by Stotsky and Rhett. "Elderly loneliness and its relation to residential care" by Rainwater. "Perceived choice, social interaction, and dimen- sions of morale of residents in a home for the aged" by Puhl and Fuller. ° Level III: Situation predicting--directional causa- tive relationship with nursing intervention "A wine bottle, plant, and puppy: Catalysts for social behavior" by Robb et al. ® Level IV: Situation producing--test of nursing in- tervention "Reality orientation therapy for the institutional- ized elderly" by Lohmann and Sweeney. "A study of reality orientation and resocialization groups with confused elderly" by Voelkel. "Use of reality orientation with aging confused patients" by Hogstel. "Changes in verbal interaction among members of resocialization groups" by Gray and Stevenson. "Movement therapy with the aged" by Goldberg and Fitzpatrick. "Remotivation therapy for the elderly: A surpris- ing outcome" by Dennis. The subject matter covered by the 13 studies is nar- row. Six of the studies involved some form of group therapy intervention. None of the studies involved psychiatric be- haviors or addressed the side effects of psychotropic drugs, both of which are frequently documented as problems re- quiring careful nursing management in the elderly. It is sobering to realize that over a 20-year span, only 13 studies have been done relative to the mental health of elderly 228 nursing home residents. These studies are only precursors of the substantive clinical research that is desperately needed. Yet this poverty of geriatric mental health research offers a challenging opportunity for nurses to conduct quality studies of elderly residents and their mental health needs. Re- search opportunities in this area are "ripe for picking." Although we did not include dissertation abstracts in our review of studies, an encouraging number of studies on mental health of aged persons have been conducted by doc- toral students. These studies involve nursing interventions, development of instruments, assessment, and attitudes and morale in nursing home residents. Key Issues and Challenges A priority for health care professionals is to equip nurs- ing home staffs with knowledge derived from research so that they can deal effectively with mental illness in the el- derly patients in their care. An estimated 85,000 nursing home residents were formerly mental hospital patients. The National Institute of Mental Health estimates that nursing homes are now the single largest site for care of the men- tally ill. More dollars are spent for the care of the mentally ill in nursing homes than in any other type of facility. With the rapidly increasing number of nursing homes and the burgeoning numbers of elderly persons with mental health problems, it is understandable that staff in nursing homes have not yet acquired the skills necessary for appro- priate interventions that will enhance the mental health of residents. Kahn (1975) warned that interventions with the elderly can be harmful, particularly since they often suffer from multiple pathologies. Clearly, we need more clinical studies of interventions to meet the mental health needs of aged persons. With concentrated efforts, a research break- through is much more likely today than 5 years ago. Research Needs Concerning Common Behavioral Problems in the Aging Following are some examples of common behavioral problems that nursing home staffs face daily in their care of the elderly, many of whom have mental disorders of one type or another. They are areas where intervention is called for, but what type of intervention has proven effective or might prove effective if tried? Assaultive/agitated behavior. A nurse reports: "I was giving a 70-year-old patient a shower when he became 229 very combative toward me. He used abusive language and had me cornered in the shower shouting obscene words and trying to hit me. He didn't want a bath or shower because he 'never did at home,' so he became angry when I put him under the shower and I had to call for help to restrain him and take him back to his room." Such stories are all too familiar to nursing home staff. Intervention for assaultive behavior, both verbal and physical, on the part of patients is an area that needs concentrated study. Wandering behavior (day and nocturnal). Wandering behavior is a disorder that is not well understood. Burnside (1976) pleads for more study and monitoring of this be- havior. It is a problem for caregivers at home as well as for institutional staff. We know little about its cause or how to manage the residents' safety. Depression/suicide/hypochondriasis. = Wolanin (1983) states that the nursing literature contains not a single study on nursing interventions for depression in the elderly. Yet, we know that depression may lead to suicidal behavior in the aged person and is often a serious concern for nursing home staff and for families. An indepth study that examines sui- cidal behavior and depression and differentiates levels of intent on the part of residents would assist staff in making discriminating suicidal assessments. There is preliminary evidence that hypochondriasis may be the way some elderly residents cope with depression (Ferrario 1982). Hallucinations and delusions. Study of the nature and perhaps uniqueness of delusions and hallucinations in the el- derly might prove helpful for nursing intervention. These symptoms are a very distressing problem for the health caregiver as well as the patient. Confusion. Confusion is usually ranked by many caregivers of the elderly as the foremost care problem. Fortunately, research on confusion in the elderly is becom- ing more prevalent, although most such studies to date have involved elderly patients hospitalized in acute care set- tings. Again, there is a desperate need for study of this problem that continues to cause great concern for families of aged persons. Dealing with confusion and attempting to understand its causes is a familiar theme in nursing homes, if not in the literature. Drug reactions. Another critical area of concern is the reaction of aged persons to drugs. The multiple effects of medications and serious drug interactions, especially antipsychotic medications and tranquilizers, warrant further study and broad dissemination of findings. 230 Ethical Considerations Research studies on the elderly inevitably raise ques- tions about the ethical aspects of resident participation. Doing research with aged persons is difficult because the el- derly are often suspicious of signing papers and may refuse to sign informed consent waivers required by research pro- tocol. Elderly residents may also have difficulty under- standing the intent of the study. They may be unable to follow directions and may require several explanations and objective guidance. Use of experimental designs that use treatment and no-treatment control groups again raises ethical questions as to the effects of deliberately manipu- lating the elderly. Davis (1981) suggests that, in the long run, the ethics of gerontological nursing research depends on the ethics of the researcher. She believes that adopting special ethical guidelines applicable only to research of the elderly would only further stigmatize them. She concludes that the aged should be treated with the same ethical considerations as research subjects of any age. As such, they deserve to be informed about the study, to withdraw from the study if they desire, and to be assured that their status as a resident or patient will not be affected by their lack of participa- tion. According to Davis, researchers must be the advo- cates of their elderly research subject. Recommendations Our review of the literature concerning mental health/ illness in nursing homes clearly shows the absence of pro- grammatic research efforts. Even where there are several studies on the same topic, they do not build on one another. None of the research articles reviewed here has been repli- cated. The four reality orientation studies, for example, all use different methods, making cross-comparisons difficult. Further, there is a paucity of consistent well-designed de- scriptive research in nursing. We still need to name, clas- sify, quantify, and describe phenomena in clinical practice (Wolanin 1983). We must develop well-constructed instruments for clin- ical nursing research that have adequate validity and relia- bility. Thus far nursing research has borrowed from other disciplines rather than developing tools specific for the study of clinical nursing practice. Sills (1977) suggests there has been an overuse of certain borrowed instruments, such as the Opinions About Mental Illness Scale. This scale is a 231 widely used instrument for investigating attitudes toward the mentally ill, but one that reportedly has limitations and needs revision. Staff attitudes toward the elderly mentally ill have not been fully described or observed, a descriptive step that is necessary for examining causative relation- ships. However, new instruments in the area would be most welcome. Development of tools appropriate for clinical nursing research is a most important and timely challenge for mental health nursing. The promotion of mental health and prevention of dis- ease in nursing home residents is another area that has not been tapped for research. The knowledge that residents in nursing homes often become mentally ill after they enter the home should stimulate research in this area. Pathway studies of the elderly into institutions and back to the com- munity could provide useful data for preventing inappropri- ate admissions. Staffing ratios and the educational requirements of staff are other areas of concern. Systematic studies of ideal, or creative, staffing patterns for nursing homes are urgently needed. The numbers and types of staffing mix for quality resident care have yet to be deter mined. Clinical investigators need to be aware of the cost- effectiveness of their research and the inherent policy im- plications. Although some clinical practice research, par- ticularly descriptive studies, can be undertaken at minimal cost, there is still a dire need for funding. Financial support is necessary to carry out sound, systematic interdisciplinary research that will provide practice knowledge. Research findings must also be widely publicized so that they can be used by practitioners. It is difficult to fathom that only 13 research studies have been done in the past 20 years on mental health nursing of elderly nursing home residents. What is more alarming is that there was little if any published research during this entire period on the elderly in psychiatric hospitals. Obviously there is a crucial need for well-designed nursing practice studies in nursing homes. To this end, we need to develop nurse researchers with methodological expertise, knowledge, and interest in geri- atric mental health. In conclusion, mental health care is a critical service need of aged persons in nursing homes. Research in mental health nursing for the elderly commands a high priority in clinical nursing since the knowledge generated could im- prove the quality of life for thousands of elderly nursing home residents. Today's caregivers may be care recipients 232 by the turn of the century. Therefore, what we discover about the mental health of aged persons today may affect our own tomorrow. References Anderson, C.J. Issues in the treatment of psychiatric- geriatric patients: A brief review of the literature. Journal of Gerontological Nursing 3(3):32-41, 1977. Basson, P. Sear study and results. Gerontological Nursing Literature (16)3:267-272, 1967. Brimmer, P. Past, present and future in gerontological nursing research. Journal of Gerontological Nursing (5)6:27-34, 1979. Burnside, I, ed. Nursing and the Aged. New York: McGraw-Hill, 1976. Cohen, J., and Struening, L. Opinions about mental illness in the personnel of two large mental hospitals. Journal of Abnormal and Social Psychology 64:349-360, 1962. Collins, J.; Stotsky, B.; and Dominick, J. Is the nursing home the mental hospital's back ward in the community? Jour- nal of the American Geriatric Society 75-81, 1967. Ferrario, J. "Coexistence of Hypochondriasis and Depres- sion in the Elderly." Unpublished doctoral dissertation, Case Western Reserve University, 1982. Francis, G., and Odell, S. Long-term residence and loneli- ness: Myth or reality? Journal of Gerontological Nursing 5(1):9-11, 1979. Goldberg, W.G., and Fitzpatrick, J.J. Movement therapy with the aged. Nursing Research 29(6):339-346, 1980. Gortner, R., and Nahm, H. An overview of nursing research in the United States. Nursing Research 10-33, 1977. Gray, P., and Stevenson, J.S. Changes in verbal interaction among members of resocialization groups. Journal of Gerontological Nursing 6(2):86-89, 1980. Gunter, L., and Miller, J. Toward a nursing gerontology. Nursing Research 26(3):208-221, 1977. Hogstel, M.O. Use of reality orientation with aging confused patients. Nursing Research 28(3):161-165, 1979. Jarvik, L.F. Aging and psychiatry. In: Psychiatric Clinics of North America. Philadelphia: W.B. Saunders, 1982. pp. 5-9. Lohmann, N., and Sweeney, N.M. Reality orientation ther- apy for the institutionalized elderly. Journal of Geronto- logical Nursing 8(7):396-401, 1982. 233 O'Toole, A. When the practical becomes theoretical. Jour- nal of Psychiatric Nursing and Mental Health Services 19(12):11-18, 1981. Puhl, J.M., and Fuller, S.S. Perceived choice, social inter- action, and dimensions of morale of residents in a home for the aged. Research in Nursing and Health 3:147-157, 1980. Putnam, P. Nurse awareness and psychosocial function in the aged. Gerontologist 13(2):163-166, 1973. Rainwater, A.J. Elderly loneliness and its relation to resi- dential care. Journal of Gerontological Nursing 6(10): 593-599, 1980. Sills, G.M. Research in the practice areas. Research in the field of psychiatric nursing, Part 4. Nursing Research 26: 201-207, 1977. Simms, L.M.; Jones, S.J.; and Yoder, K.K. Adjustment of older persons in nursing homes. Journal of Gerontological Nursing 8(7):383-386, 1982. Spiro, H. Reforming the State hospital in a centrified care system. Hospital and Community Psychiatry 33(9): 722-727, 1982. Voelkel, D. A study of reality orientation and resocializa- tion groups with confused elderly. Journal of Gerontolo- gical Nursing %(3):13-18, 1978. Wolanin, M.O. Clinical geriatric nursing research. In: Fitzpatrick, J., and Werley, H., eds. Annual Review of Nursing Research. Bowie, Md.: Robert J. Brady Co., 1983. 234 CHAPTER 17 MENTAL HEALTH IN NURSING HOMES: BEHAVIORAL AND SOCIAL RESEARCH Rosalie A. Kane, DSW The Rand Corporation Santa Monica, CA The research agenda of practical people concerned with care and with life in nursing homes must converge. In nursing homes, functioning (which really means everyday living) is all-important, regardless of whether a physical, mental, or social problem, or some combination thereof is impeding that functioning. In old age, these dimensions are hard to separate. A change in one dimension will affect a change in another dimension. For example, one's mood affects one's activity level, but one's activity also affects one's mood; physical illness clearly affects both activity and mood; and one's ability to function independently is en- hanced or deterred by social conditions, and vice versa. Encountering an older person in a long-term care facility for the first time, it is hard to pinpoint the nature and con- tributing causes of an observed dysfunction--incontinence, for example. The problem could be the result of forget- fulness, a urinary infection, inability to walk to the toilet, or inadequate facilities. Powerful forces in the caregiving situation may also impact residents’ functioning. Drugs are the major concern, but bedrest, restrictive rules, a sterile and unstimulating en- vironment, and a lack of access to timely and appropriate diagnosis and treatment for medical problems may have a devastating effect on functional status. Professional parochialism has little place in planning research that will cast light on mental health in nursing homes. Nursing home residents, whose average age is 84, are, by definition, frail and vulnerable. They are hardly in an advantageous position to influence their social conditions and, if social change is to be made, caregivers need to take the decisive steps. From a social science perspective, then, more specification is needed about the interactions among the physical, mental, and social functionings of nursing home residents. 235 Purpose of Research in Nursing Homes All research in nursing homes should be directed at improving the quality of care provided in these facilities. We cannot avoid the elusive phrase "quality of life." When a society asks people to relocate to receive its care, the com- munity must collectively accept responsibility for the qua- lity of life in the new location. Nursing home residents should suffer no more diminution of the quality of life than that inherent in their specific condition. To expect most residents of nursing homes to be happy and consistently en- gaged in rewarding social activity would be naive. Few in the general population at any age would lay consistent claim to that enviable state, and we know very little about frail elderly persons outside the nursing home in this regard. The primary goal of nursing home research should be to define reasonable expected outcomes for various groups of persons in residential institutions and to specify ways to achieve those outcomes for the target population. A second general objective of nursing home research should be to determine how to achieve the desired outcomes efficiently. The total public and private costs for nursing home care are astronomical; no planner can ignore the bottom line. The dollars available probably can be real- located to get better results for the money. Moreover, cost-effectiveness of nursing home care should be examined in light of ways in which public monies currently spent in the acute hospital sector could be diverted to improving life and care in nursing homes. Conversely, we should examine how procedures in the acute sector (the prime current ex- ample being the Diagnostic Related Group (DRG) system of prospective Medicare reimbursement of hospitals) influence the cost-effectiveness of nursing homes. We can formulate our questions about costs more cogently than is done at present, but once our goals are established, we cannot ig- nore the effort to find cost-effective ways of achieving them. Mental Health Focus The discussion up to this point has treated nursing home care in general. When we turn specifically to mental health issues, careful distinctions must be made. Nursing homes serve a diverse population. Some residents enter because of mental illness, and some are at risk of mental illness developing or worsening as a result of their admission. It is useful to distinguish at least four facets of mental health in nursing homes, all of which require study: 236 Chronic mental illness in nursing homes. Many indi- viduals formerly treated in State mental hospitals are now in nursing homes. These persons with diagnosed chronic mental illness represent a relatively small proportion of nursing home admissions, but their stays tend to be lengthy. For the most part, these are the youngest nursing home resi- dents. Subgroups of the chronically mentally ill include chronic schizophrenics, the developmentally disabled, and alcoholics. Senile dementia. This large category of persons includes all elderly persons entering nursing homes with a label of "senility" or "dementia." Although this group carries a primary or secondary diagnostic label of mental illness, few senile elderly persons have been carefully ex- amined to consider possible remediable causes of demen- tia. With growing sophistication of caregivers about senile dementia of the Alzheimer's type (SDAT) and multi-infarct dementia, we may have substituted precise labels for our former generalized terms (e.g., senility or organic brain syndrome) without achieving any more precise understanding of how actual behavior varies and what influences such variations in the nursing home setting. Mental health problems. You don't need to be men- tally ill to have a mental health problem in a nursing home. The prevalence of depressed affect, anxiety, rage, and with- drawal is high among nursing home residents. Unfortu- nately, little is known about the course of negative states in nursing home residents. Research should attempt to distin- guish between those feelings that are secondary to the con- ditions and situations that brought about the admission, and feelings that arise from the conditions of nursing home life itself. Common sense suggests that those categories will not be distinct. Persons with severe physical limitations (the result of a stroke or multiple sclerosis, for example) or suf- fering from a life-threatening disease (e.g., terminal cancer) or those recently bereaved of family and bereft of home have ample reason for depression, anxiety, and anger. But it is equally true that persons transported for life into an en- vironment with restrictive routines and a living space no bigger than the immediate vicinity of a bed in a double room and no more privacy than a phone booth have a right to neg- ative emotional reactions. Because most nursing homes have at least some residents with chronic mental illness and "senile dementia," lucid individuals will understandably experience the setting as terrifying and unpleasant. The challenge is to acquire an understanding of the specific nature of these reactions and ways to assist residents. An environment for mental well-being. The nursing home should offer one of the most clear-cut opportunities in the mental health field for prevention of mental illness. Mental health research needs to be directed to ways that the environment can be rearranged to maximize emotional well-being for the various subgroups living in the facility. These could include changes in routines, in staff attitudes, or in the environment itself. Epidemiology A major priority is to compile infor mation about the in- cidence and prevalence of both mental illness and negative cognitive and affective states in nursing homes. Despite the potential offered by defined populations, we know little about the patterns of nursing home use by different groups of people. The main source of such information has been the National Nursing Home Survey and State Medicaid records. These data are limited and do not take the re- searcher far. For example, State Medicaid records tend not to distinguish readmissions from new admissions, thus giving a distorted picture of length of stay and intervening hospital use. We cannot depict the experience of individuals in nursing homes without the capacity to track a group of residents through multiple admissions, hospital stays, and relocations of various sorts. Another important need in epidemiological research is the ability to distinguish between information about resi- dents of nursing homes and information about persons discharged from nursing homes. The two groups are dif- ferent because short-stay residents will be undercounted in any cross-sectional study. About half of all persons ad- mitted to nursing homes are discharged within 3 months, and half of these discharges are due to death (either in the nursing home itself or in a hospital). The remaining 50 per- cent may return to the community or enter another nursing home. Therefore, we need to identify the varied mental health needs among subgroups of these short-stay residents. We also need to consider interventions that will enhance the likelihood that a planned short-term admission will really be a short-term admission and minimize the terror associated with short nursing home stays. Furthermore, many short- tern residents are terminally ill, and their mental health needs require special consideration. In contrast, cognitively impaired persons and persons with psychiatric diagnoses are more likely to figure among 238 long-stay residents. A cross-sectional look at residents at any given time will overestimate the number of people with cognitive impairment and mental illness who use nursing homes. Characteristics of Research in Nursing Homes In general, the state of the art of research in nursing homes is dismal. Some key problems are enumerated below: l. 4, Nursing home research, as already indicated, relies heavily on cross-sectional studies. Longi- tudinal studies with frequent intervals of data collection are needed to capture changes in the frail, elderly population. Newly admitted residents are often not distin- guished from long-term residents in nursing home studies. Large-scale studies tend to rely on data gathered from respondents other than the residents them- selves. Too often information on physical func- tioning, social activities, and even mood states are gathered by soliciting opinions from a nurse or attendant rather than by asking or observing the resident directly. The reliability of gathering in- formation about moods and satisfaction of lucid residents from a third party is questionable at best. Studies that rely directly on residents for infor- mation deal with small, highly selected, and self- selected samples. Researchers rarely report refusal rates. Reliability of assessments of nursing home resi- dents is also rarely reported. True inter-rater and inter-temporal reliability checks are the excep- tion. From our own work, we have found it pos- sible to achieve high reliability, but this is pos- sible only through extensive planning, training, replanning, and retraining (Kane et al. 1983a, 1983b). Interventions used in nursing homes are often evaluated by measuring outcomes that are inappropriate, invalid, or insensitive to meaning- ful aspects of the residents' lives. To illustrate a questionable measurement of validity, participa- tion in activities may be measured positively 239 7. 10. 11. 12. when a resident is judged to be "watching" tele- vision, even if the television is yards away, inau- dible, and the staff controls the selection of pro- gramming. The problem of sensitivity to change is often illustrated by a measure of social contact that uses as its smallest category "receives a vis- itor once every 6 months or less." The degree of socialization implied in a semi-annual visit, a monthly visit, and a daily visit are lumped to- gether in a single broad category. By doing so, researchers are ignoring variations that could make a substantial difference to residents. The data base of nursing home records is usually inadequate for research purposes. Records tend to be incomplete, infrequently updated, and, even if of high quality, usually omit important psycho- social dimensions. Furthermore, information in nursing home records is used to document legal eligibility for various types of care. The purity of such information for research purposes must be questioned. Long-term care facilities with the best track records for systematic and high-quality research constitute a small group of nonprofit facilities that are atypical of the homes where most resi- dents are found. Nursing home research flounders on problems of gaining informed consent from residents and their families. Such research as is available often fails to inte- grate information about disease variables and drug treatments with information about physical, mental, and social functioning. Although nursing homes are highly regulated on many levels, there is little evidence that these regulations affect outcomes. This is particularly true of the stipulations for various staffing pat- terns. In view of the dearth of evidence, it is ironic that many studies use nursing-staff-to- patient ratios as a proxy measure of quality. A peculiarity of intervention studies in nursing homes is that most efforts to improve psycho- social well-being seem to work. Whatever the independent variable (a pet, a plant, flexibility of scheduling, opportunity for meaningful activities, a discussion group, a public affairs project), the program seems to affect the dependent variable, 240 be it activity levels, functional status, perceived well-being, and so on. This seems to suggest that, in an underserved environment, almost any efforts to develop humane and sensitive programs will be beneficial. 13. Residents' "adjustment to nursing home" is used repeatedly in the literature as an important out- come variable. This seems to be a peculiarly provider-centric way of looking at the issue. Satisfaction might be better measured directly rather than concentrating on a judgment of ad- justment. Empirical outcomes such as range of social activities or physical functioning can also be characterized directly. If positive "adjust- ment" means that residents cease complaining or creating disturbances, mental health professionals might come to view "adjustment" as maladaptive. Formulating an Agenda for Research We suggest the following categories of topics for future research efforts. Descriptive Studies of the Nursing Home Resident The primary focus is not global descriptors such as age, sex, and race, but rather specific information that might have implications for mental health professionals. What are the former occupations, interests, immediate previous ex- periences, and family ties to those in nursing homes? How did the resident get to the facility--who made the choice, whose input was also used, and, most importantly, with what information and expectations did the individual come to the facility? Initial Experience in the Nursing Home Initial events after nursing home admission should be studied from the point of view of the reactions of the residents themselves. The small but growing literature of personal recollections of present or former nursing home residents reveals that this time can be extraordinarily traumatic because of many small details that could perhaps be alleviated by environmental changes. Perceptions and Preferences of Residents Substantial work is needed to flesh out the overused but little understood concept "quality of life." We need to know 241 from residents what aspects of life in a nursing home they find satisfying or troublesome. How are activities viewed by various subgroups or residents? Which activities do they enjoy? Can different patterns of preferences be elucidated that distinguish among preferences for physical activity, cognitive alertness, comfort, safety, and so on? It may well be that these outcomes are incompatible. Pain may be alle- viated through sensorium-clouding drugs. Independent ac- tivity puts an individual at risk of falling or greater injury. However, until we grapple with these issues and systemati- cally examine the questions of value preferences, we cannot define desirable outcomes against which to hold a system accountable (Kane and Kane 1982). Association Between Processes and Outcomes Descriptive studies could be developed to test rela- tionships between well-specified processes and clearly de- fined outcomes. Among the independent variables in such studies, one could include environmental conditions (e.g., single rooms, flexible routines, drug use), types of activities and therapies, attitudes of staff, staffing patterns, and so on. The specific items to be tested need careful definition, as do the outcomes themselves. Such studies are most bene- ficial when based on hypotheses about expected relation- ships among the variables. Furthermore, until the links between process and outcome are indisputably clear, certain organizational outcomes such as staff turnover, resident participation in resident councils, or any number of similar variables must be treated as intermediate outcomes whose relationship to resident well-being remains to be documented. Effects of Labels Studies examining the experience of nursing home resi- dents tagged with various labels--e.g., "senile dementia" or "heavy care" or "behavior problems"--would be illuminating. Persons bearing such labels should be followed longitudinally to examine characteristics of their course in nursing homes and the range of actual cognitive, emotional, and physical functioning buried under such labels. Measurements may need to be made every 6 months or even more often to adequately describe the outcomes associated with these labels. 242 Integration versus Separation of Cognitively Alert and Cognitively Impaired Residents This policy issue is perhaps the biggest challenge to mental health disciplines in nursing homes. In systemati- cally gathering evidence on this question, one must address issues of the adequacy of our assessment technology for senile dementia (to avoid false labeling); the extent to which an individual with dementia is stimulated by mingling with lucid persons; the extent to which the lucid individual de- velops mental health problems or diagnoses by associating with mentally impaired persons; conditions that minimize distress in those with senile dementia; and factors associ- ated with less use of restraints (chemical and physical). Even if demented residents in some way improve by contact with, say, a mentally normal roommate, the ethics of using the latter person's life as an environment to improve func- tioning of the former person is questionable. However, much research is needed to find out how to manage senile dementia humanely in a way that minimizes deterioration and misery for the demented person and at the same time provide residential care for mentally alert persons in a way that maintains a level of acceptable and rational living. Implementation Studies Nursing home improvements to enhance the mental health of residents do not need to await research results. Much is known through a combination of previous research and common sense. As long as we know that certain condi- tions are desirable--including good-mannered, pleasantly spoken staff, routines that do not insist on early rising, sin- gle rooms, privacy, and a myriad of other specific items-- studies are needed to determine how to achieve these desired conditions in nursing homes of various size and ownership. Conclusion Nursing homes are undoubtedly an appropriate location for a mental health presence and mental health research. The foregoing has demonstrated the need for descriptive studies (both cross-sectional and longitudinal) that use information gathered from speaking directly to and ob- serving residents to test hypotheses about the relationships among the physical, mental, and social functioning of per- sons in nursing homes. We have also addressed the need to examine pathways to the nursing home and to carefully 243 target specific subgroups of nursing home residents whose lives may be improved by attention to mental health. Two final caveats might be emphasized in conclusion. Mental health study in nursing homes should include, but not be limited to, efforts to study subgroups with ac- curate psychiatric diagnoses according to the most recent Diagnostic and Statistical Manual (DSM-III). The current effort in that direction is valuable, although German (1984) has already pointed out the limitations of the Diagnostic Interview Schedule (DIS) in the nursing home setting. In addition to work that uses psychiatric diagnosis as a major variable, affective and cognitive states of residents should be assessed and measured in themselves. In our work at the Rand Corporation, we have been able to achieve high inter- rater reliability in such assessment. Matters such as suici- dal ideation or anxiety or depressed mood can be assessed directly and repeatedly to determine the prevalence and natural course of such phenomena in nursing homes and the conditions associated with positive or negative states. For example, in five waves of interviewing in four nursing homes, we have repeatedly found that about 10 percent of nursing home residents think of killing themselves almost all the time, whereas others express less frequent thoughts of suicide, and the majority never think of killing themselves. It is equally important to learn more about the factors as- sociated with such real phenomena as to identify the num- bers of cases of depression as measured by DSM-III. Second, we reiterate the emphasis on values inherent in this whole discussion and we plead for sensitivity to the value judgments inherent in the way nursing home problems are perceived and the measures used to examine outcomes. Neither the nursing home nor mental health professionals can be responsible for conflicting societal goals, and much communitywide discussion buttressed by information from the elderly is needed to develop goals. But the way we per- ceive the problems makes a world of difference. If an indi- vidual wishes to be awake and out of bed at midnight, we can label the person an insomniac or a behavior problem. Alternatively, we can facilitate that fairly normal wish. We can define adjustment in a way that precludes any real change in noxious environments to which the nursing home resident is thought to need to adjust. Conversely, mental health professionals can move assertively into the nursing home and use their considerable skills to examine the cognitive and emotional life of various types of residents and design and test ways to improve things for as many resi- dents as possible. 244 References German, P. "Nursing Home Study of the Eastern Balti- more Epidemiological Catchment Area Study." In: Harper, M.S. et al.,, eds. Mental Illness in Nursing Homes: Agenda for Research. Rockville, Md.: National Institute of Mental Health, 1984. pp. 39-59. Kane, R.L., and Kane, R.A., eds. Values and Long-Term Care. Lexington, Mass.: D.C. Heath, 1982. Kane, R.L.; Bell, R.; Riegler, S.; Wilson, A.; and Kane, R.A. Assessing the outcomes of nursing home patients. Journal of Gerontology 38:385-393, 1983a. Kane, R.L.; Bell, R.; Riegler, S.; Wilson, A.; and Keeler, E. Predicting the outcomes of nursing home patients. Gerontologist 23(2):200-206, 1983b. 245 CHAPTER 18 ETHICAL CONSIDERATIONS AND MORALE IN NURSING HOMES: IMPLICATIONS FOR RESEARCH A. Teresa Stanley, R.N., D.N.Sc. Professor and Dean School of Nursing Incarnate Word College San Antonio, TX There is an appointed time for everything and a time for every (purpose) under the heavens A time to be born, and a time to die... A time to weep and a time to laugh... A time to be silent and a time to speak. (Ecclesiastes 3) Throughout our country's history, there have been times when our society's consciousness was sufficiently raised to focus on specific human problems. In the early 1960s, the nation focused on the plight of the mentally ill hidden away in mental institutions. In the 1970s, the American people became concerned with death and dying, and the focus in the eighties is very much on our ever-increasing aging popu- lation. According to Naisbitt (1982), societies, like human beings, can handle only so many problems and concerns at one time. According to his analysis in Megatrends, ageism became a priority concern as early as 1977. Our challenge now is to be concerned with the integra- tion of existing issues of aging. As health professionals, we must reflect upon, review, evaluate, and address how we measure up to our moral commitments to those we serve. As Naisbitt (1982) proposes, "It is important to acknowledge the kind of work we do because we are what we do, and what we do shapes our society." This paper highlights some of the ethical considerations regarding the mentally ill elderly. First, I will attempt to define the problem, particularly in relation to the allocation of resources; second, I will discuss the need for an ethical analysis of the situation and suggest a possible framework for such analysis; third, I will focus on selected ethical di- lemmas in the "real world"; and finally, I will recommend several implications for research and social policy. 247 Defining the Problem in Terms of the Allocation of Resources How does one define the problem? How do we describe the real world of the nursing home and the mentally ill and their situation in those facilities? What are the limitations and constraints of this human condition? This is where the interdisciplinary approach is most effective. There will be no solution if those in each discipline--the ethicists, social scientists, social workers, researchers, practitioners, ad- ministrators, policy makers, interest groups, owners, con- sumer groups, patients' families, and others--continue to go their separate routes. This has gone on for too long; it is time for all to coordinate and unite their efforts. A debate on whether mentally ill or emotionally dis- turbed persons belong in nursing homes might be a good place to begin. Positions to be defended might include the following: i. There should be no mentally or emotionally ill persons in nursing homes. 2. Some mentally or emotionally ill persons should be in nursing homes. 3. Some mentally or emotionally ill persons who are presently in nursing homes should be in home care, in community service settings, or in halfway houses. 4. The mentally or emotionally ill should not be in nursing homes unless the facilities provide appro- priate total care, not just custodial care. One could suggest other possibilities. One position might argue that mentally and emotionally ill persons belong in nursing homes, provided attention is paid to the quality of life of such residents. However, we see a need for other more holistic alternatives which will promote autonomy and respect for persons. Is the problem one of allocation of re- sources? Do the mentally ill elderly have a particular claim on scarce resources, or have these goods been distributed equitably? A high percentage of the elderly population suffers mental or emotional disturbance. Among the elderly living in the community, 12 to 25 percent have moderate or severe mental health problems (Epstein 1975). The prevalence of mental illness, in general, and depression, in particular, rise with age. The World Health Organization reports that the highest incidence of new cases of psychopathology is found in persons 65 and older (Pardes 1979). 248 In 1977, approximately 22 percent of the nursing home population (288,000 persons) were described as mentally ill or senile; this exceeded the total number of mental hospital patients (170,000) (NIMH 1976). Moreover, this is a conserv- ative estimate, since it included only those with a primary diagnosis of mental illness. According to Redick (NIMH 1976), at least one-half to two-thirds of all nursing home residents would be included if secondary diagnoses were counted. Most of the patients admitted to nursing homes are admitted primarily for physical problems, yet 60 to 75 percent suffer from emotional disturbances. Between 1969 and 1973, the number of elderly persons in public and pri- vate mental hospitals decreased by about 60 percent, while the number of nursing home residents aged 65 and over with chronic mental disorders increased more than 100 percent-- from 96,000 to 194,000 (NIMH 1976). Deinstitutionalization has resulted in the release of several hundred thousand patients from public mental hos- pitals in the last 20 years. Because conditions at these hospitals were deplorable, this might be considered a hu- manitarian development. Protecting the dignity and rights of the mentally ill appeared to be the ethical thing to do when society's conscience began to be bothered. Feldman (1983) believes that, aside from some developments in drug and treatment modalities, the major impetus behind deinsti- tutionalization was our own need to do good and look good. With no treatment plan developed, the patients who had once been deemed to need the care of a mental hospital were simply judged to be "better off" someplace else. Younger mental patients were returned to the commun- ity in droves, while the elderly were moved into nursing homes. The chronic mentally ill patients who displayed "in- stitutional behavior" and had grown old in the mental hospi- tals became real problems in the nursing homes. Now that there are more mentally ill persons in nursing homes than in public mental hospitals, it is our belated duty to consider how appropriate these two placement options are in terms of respect for persons and for justice. Saul Feldman (1983) describes the situation in a scathing commentary entitled, "Out of the Hospital, Onto the Streets: The Overselling of Benevolence." He believes deinstitutionalization has caused a great deal of harm (e.g., deaths from exposure, robberies, aimless wanderings, and the general despair of former pa- tients who are now homeless and easily victimized). Re- storing the 'rights" of these mental patients has been no antidote for their unforecasted misery. 249 What caused the failure of a seemingly humane idea? Feldman cites a number of causes: "Lack of money for follow-up, the fragmentation of the mental health system, poor coordination between mental health and social services at all levels of the government, and inadequate housing." He also blames the inattention paid to the ethical behavior of mental health administrators and those who control re- sources and set policy as another underlying cause for the inadequate planning, the errors of judgment, and the failure of social policy. Part of the problem was that no single Government agency assumed responsibility for the chroni- cally mentally ill. Crucial questions were totally ignored or never asked: Where would all these people go? Where would they live? Some were supposed to live in the "com- munity," yet 10 years passed before community health cen- ters were required to pay attention to sheltered living ar- rangements, and even then there was no funding. A study on deinstitutionalization of the mentally ill conducted by the University of Denver for the National Center for Health Services Research (1981) makes a further indictment. Although nursing homes account for 29 percent of the total national bill for direct care of the mentally ill-- more than State, county, and other public mental hospitals combined--they rarely provide special services for the men- tally ill or employ psychiatrically trained staff; instead they rely heavily on psychotropic drugs to control behavior. This study also found that residents with chronic mental illness have as many physical ailments as other patients, but they receive less physical therapy and less medication for phys- ical conditions than residents who are not mentally ill. Moreover, the staff of nursing homes are, for the most part, not trained to deal with mental health problems. The mentally ill population in nursing homes includes many patients under 65 years of age. Growing numbers of younger, ambulatory, indigent, psychotic patients are con- fined to nursing homes. The expanding role of the nursing home in the care of mentally ill is distressingly similar to that of mental hospitals prior to the "reform." According to Barnett (1978), "This problem can be expected to intensify, given the mental health policy and demographic trends." How appropriate then has been the allocation of re- sources for the placement of the mentally ill elderly in terms of the principles of beneficence/nonmaleficence, re- spect for persons, and distributive justice, or in terms of patients’ rights to care, treatment, and careful diagnosis? These are some of the ethical considerations that need to be resolved and which we will discuss next. 250 A Framework for Ethical Analysis Is there a need for an independent ethical accounting on behalf of the mentally ill in nursing homes? Are the needs of the elderly and the mentally ill sufficiently different from other categories of people that they warrant specifi- cally focused ethical reflection? Are ethical accounts of problems and conflicts of other dependent populations (such as mentally retarded children) sufficient for resolving our ethical dilemma with respect to the elderly mentally or emotionally ill? What specific ethical principles can help us analyze our value conflicts? Ethics deal with the values of human life. To act ethi- cally is to have analyzed one's decisions in light of standards of what is right and good. Ethical analysis also involves the rational assessment of a course of action in relation to gen- erally acceptable principles or rules of conduct. Specifical- ly, ethics responds to the question, "What ought I or we to do?" Without doubt, decisions regarding the mentally ill in nursing homes involve a vast array of conflicts that perme- ate both the micro and macro level. The following ethical analysis looks at our moral obligations both to the elderly and the mentally ill who are situated voluntarily or involun- tarily in a nursing home in light of some basic ethical principles. The literature is sparse with respect to ethical reflec- tions on the nature, extent, and justification of our obliga- tions toward the elderly; it is especially sparse with regard to the mentally ill elderly. Recently, Feldman (1983), for- mer director of the Staff College at the National Institute of Mental Health, reflected that in his 10 years as editor of the journal Administration in Mental Health, he could not recall a single manuscript on the behavior and ethics of mental health administrators. In a field that exemplifies personal values and self-examination, we see little evidence of a sustained ethical reflection on nursing homes, particu- larly in regard to the placement and treatment of the men- tally ill. Recently the National Institute on Aging devoted a sec- tion to ethics in its National Plan for Research on Aging (1982). It cited several reasons to justify an ethical exami- nation of research in the field of aging: I. The newness of the field poses fresh challenges. 2. Whether correctly or incorrectly, the aged are re- garded as a special class or segment of society. 251 ("Although this distinction may be more attitudi- nal than biological, it implies that the treatment the aged receive in various situations will some- how differ quantitatively or qualitatively from treatment young adults receive, including health- related encounters. This assumption has been amply confirmed.") 3 The aged are at a high risk for harm. The previously cited University of Denver study con- cluded that "there are few studies available in the literature that provide reliable data on the use of nursing homes for the chronic mentally ill, and there are many research gaps that remain to be filled before definitive policies and pro- grams can be established" (Cicchinelli for NCHSR, 1981). This paper will neither attempt to make up for deficits in the literature nor to develop a program for action. Our intent is simply to point out the issues and to provide a moral point of view in the form of some applicable ethical principles. While ethical analysis does not provide definitive answers or solutions to a problem, it does provide moral en- lightenment on the issues involved. Before discussing the specific issues involved, let us review some relevant ethical principles. Principle of Beneficence/Nonmaleficence This principle postulates that we ought to produce good and do no harm. It is difficult to separate nonmaleficence (the duty not to injure) and beneficence (the duty to take positive steps to benefit others). Both are based on the duty to implement those actions that help and to avoid those ac- tions which result in harm. This principle could be an ef- fective guide for social policymakers, administrators, and professionals. For the person being helped, however, the very act of being helped can have the paradoxical effect of increasing their dependency and decreasing their sense of control. Thus the need for appropriate checks and balances is evident. The paternalistic approach ("We know what is best for you") permeates our health care system. For example, dein- stitutionalization of the mentally ill to nursing homes was intended as a benevolent deed based on the value that nurs- ing homes were the "least restrictive environment"; yet many nursing homes are more restrictive than mental hos- pitals. Lack of foresight and planning further botched the intended benevolent deed. The actual result was that less money was spent on mental institutions. If the good that 232 was intended was not accomplished, did deinstitutionaliza- tion at least minimize or negate harm as demanded by the principle of beneficence/nonmaleficence? Principle of Respect for Persons This principle requires that the dignity and autonomy of persons be protected and promoted and that the self- determination of those affected by a decision be respected. Engelhardt and McCollough (1981) paraphrase this principle in the form of a maxim: "Do not do unto others what they would not have chosen to do for themselves." Respect for persons encompasses the right of freely given, and informed, consent. The individual's best interest and the individual's free choice are of primary concern. This fundamental prin- ciple of ethical discourse is supported by Kant (Paton 1964): "So act that you treat humanity in your own person and in the person of everyone else . . . as an end and never merely as a means." Jonsen (1976) suggests that all individuals be seen as such, equal to every other, and treated in consideration of their uniqueness. To interfere with a person's purposes, pri- vacy, or behavior demands cogent moral justification. If one interferes in another's life, it ought only be to promote good. The quality of interference requires the enhancement of a person's autonomy and the encouragement of those ac- tivities and purposes that are compatible with the autonomy of others and those conditions that are compatible with so- cietal cooperation. Jonsen (1976) goes a step further and identifies three areas where this principle can be applied in relation to the elderly. First, the uniqueness of each individual, rather than the elderly as a class, should form the basis of decisions, thereby rendering generalizations inappropriate. Second, respect for persons is a prerequisite for determining the unique needs and desires of the elderly. Third, respect for persons does not merely mean protection of the elderly, but the enhancement of their autonomy. Our society may re- gard these assertions as paradoxical because we consider dependency to be a characteristic of the elderly, particu- larly the mentally ill elderly. Yet Jonsen states that "at- titudes, perhaps seldom explicit, constitute the essential immorality of treatment of the elderly." Unfortunately, in our society, enhancement and promotion of autonomy are conditioned by length of life expectancy and by state of de- bility and not by respect for persons. As Jonsen concludes, "It is an ethical principle, directed toward those whose po- tentialities are less." 253 Principle of Distributive Justice The principle of just distribution requires that, in the comparative treatment of individuals, there be fair and equitable distribution of society's benefits and burdens. This theory of justice requires that all persons have equal claim to services or equal claim to a minimum level of as- sistance in assuming their responsibility. The "fair share" principle involves that to which people have a right. With numerous groups requiring assistance, it is difficult to get any consensus on who is responsible for meeting needs, who should be helped by whom, and under what conditions. What claims do the elderly in general and the mentally ill elderly in particular have upon us? While there are many claims, the most basic is that of "need." We all have the right to have essential needs met--such as health care, food, clothing, shelter, and some minimal decent standard of living. What additional needs do the elderly and mentally ill elderly have that impose a moral responsibility on society? Jonsen (1976) suggests that physical and psychological defi- ciencies do not in themselves establish a moral claim for need; ". . . but if they are seen as deficiencies which com- promise the autonomy of the person, then they assume moral meaning, for it is the autonomy, its protection and promotion, which constitutes one starting premise for moral claim." For the elderly and mentally ill in nursing homes, the potential for action is diminished because they lack the fi- nancial or family resources to select other alternatives. In this situation, Jonsen contends, the grounds for justice "are manifested more and more in the individual's history of past decisions and actions. This history, reflected in memory and reflected upon by reason, sums up the autonomy of the per- son" (Jonsen 1976). Thus elderly persons are what they are, not because of what they can do, or what they will do in the future, but because of what they have done and been and be- cause they can reflect upon that fact. The basis of a right in justice is in acknowledgement of autonomy and not merely in the object of paternalistic be- nevolence. Our recognition of elderly peoples’ autonomy entails a moral obligation to provide the elderly with their fair share of social goods. While each elderly person may not individually be responsible for the creation of these goods, such a person's frailty creates a moral obligation for society because recognizing it involves the most striking af- firmation of our common humanity. Jonsen (1976) asserts, 254 "This obligation is an obligation in strict justice, not benevo- lence, because it requires the employment and reform of so- cial institutions whereby societal goods are distributed." The question of priority is crucial, yet where there are social goods rather than individual goods involved, there is no proportionate right of one claimant group over another. The ineffective utilization of resources compromises our health care system, resulting in inequitable distribution of goods. Rather than seeking alternative approaches a sim- plistic solution to the problem might consist of throwing the least productive from the lifeboat--the so-called lifeboat ethic. Clearly there is today a moral demand to modify the system in order to serve the good and use ethical principles to measure the cost and benefits. We hope this paper, as well as others in this volume, will help identify viable alter- natives and needed research directions. Ethical Issues in Care and Treatment of the Mentally I1l Elderly Right to Treatment The nursing home became a popular "dumping" ground for mental patients partly because of the increased cost of maintaining inpatients at mental hospitals due to right-to- treatment litigation. Consequently, many mentally ill per- sons, with their new-found right to treatment, soon found themselves in a new setting where, "although their mental conditions had not improved, they were again without a right to treatment" (Barnett 1978). In the process of trans- fer from psychiatric institutions to nursing homes, neither autonomy, dignity, nor respect for persons was a priority. Although the benefits were supposed to outweigh the risks, the risks were greater. Obtaining consent, not to mention "informed" consent, was not considered. As nursing home beds became available, most persons were moved out of psy- chiatric institutions into an unprepared environment lacking appropriate treatment or rehabilitation services. Right to treatment has been claimed principally on be- half of persons confined to psychiatric institutions, the in- tent of treatment being to restore these persons to mental well-being. In order to secure the goods and values of ther- apy, the courts have claimed, on behalf of patients in men- tal institutions, not only a right to treatment but also a right to public funding to provide adequate treatment. 255 However, this right to treatment as a means of restoring autonomy did not come to fruition in the nursing home. Many mental hospitals provided a more therapeutic milieu-- with more freedom to enjoy canteens, expansive grounds for walking, game rooms, and even occupational therapy--than most nursing homes, which are more custodial and more confining than the hospitals they were meant to improve upon. Another aspect of custodial care is the overuse of med- ications, rather than the provision of treatment to control behavior. Rango (1982) cites a study of antipsychotic drugs in 173 Tennessee nursing homes during 1975 and 1976 which found evidence of the misuse of medications by doctors car- ing for more than 5,000 Medicaid patients. Cohen (1982) discusses a number of legal rights of the elderly, including a fundamental right to the "least restric- tive alternative," the right of due process where liberty is constrained or at risk of being constrained, the right of the disabled elderly not to be segregated simply because they are disabled, the right to civil liberties within an insti- tutional setting, and the right to "state-of-the-art care." Cohen notes that neither the Code of Federal Regulations nor the State statutes governing State hospitals and nursing homes provides for enforcement of the Patients' Bill of Rights, save the implicit right of a State to withdraw cer- tification from a nursing home that violates the rights of patients in ways forbidden by the code. The Patients' Bill of Rights allows caregivers to violate the principle of respect for persons if to not intervene would be "medically contraindicated." The use of restraints, for example, may be justified on the tenuous grounds of pre- venting possible harm to the person being restrained. Therefore, to leave the patient without restraints is judged to be medically contraindicated. Barnett (1978) contends that we must extend the right to treatment to mentally ill nursing home residents in gen- eral and to former mental patients in particular, and argues that such a right must be more than ritualistic. Thus while conditions such as senile dementia, depression, or paranoia may not be treatable, behavioral reactions associated with them can be treated. Many of the mental problems of nurs- ing home residents are the result of social isolation and sen- sory deprivation, which are remediable. Right to Diagnosis The diagnosis of mental illness involves complex con- ceptual issues which include both ethical and nonethical 256 evaluations. "Diagnostic labeling casts individuals into sick roles, with not only special privileges, but also special obli- gations. Being placed in the sick role results in limitations on an individual's liberty and ability to pursue certain goods and values" (Engelhardt and McCollough 1981). Being di- agnosed with a psychiatric label is like being accused of wrongdoing. The stigma remains even if one is later found innocent. Such a diagnosis is not just a matter of describing abnormal behavior, but involves normative interpretations of reality which can and does have a profound impact on an individual's autonomy and choice of lifestyles. If abnormal behavior is not described, it implies that the person involved is normal and healthy and does not need treatment. Thus there are both benefits and limitations to being diagnosed with a mental illness. But diagnosing can be abused, which leads to many complicated ethical issues. "Placing individ- uals in the sick role thus involves ethical issues concerning the protection, diminishment, and manipulation of the au- tonomy of individuals and of a choice of values" (Engelhardt and McCollough 1981). A number of ethical issues are involved in the diagnos- ing and treatment of the mentally ill in the nursing home. Any person has a right to an appropriate and accurate diag- nosis to the extent that this knowledge is available. As has been discussed in previous chapters, there is lack of knowl- edge and confusion regarding diagnoses of mental illness in the elderly, as well as intentional misrepresenting of diagno- ses because of eligibility requirements for Medicare pay- ments. If misdiagnosis is a problem in regard to the elderly in general, how much more so is it in nursing homes, most of which offer no mental health services and where institution- alization will more than likely cause further damage? We again need to be mindful of the principle of benevolence ("do no harm"). Misdiagnosing and mislabeling also violate the "respect for persons" principle. Right to Participate in Decisionmaking The principle of respect for persons as a mode for ethi- cal analysis leads to the conclusion that informed consent and involvement in decisions regarding one's own life are central to the enhancement of autonomy. Thus the National Commission for the Protection of Human Subjects developed guidelines to ensure protection for research subjects, paying particular attention to the mechanics of obtaining appropri- ate consent. The Patients' Bill of Rights, with its emphasis on informed consent, is also intended to protect the best in- terest of persons in the health care system. 257 The obtaining of informed consent enhances the auton- omy of persons. Some philosophical analyses of the concept of autonomy have distinguished its two dimensions: "The first of these is authority; that is, any right to self- integrity, to choose and live out whatever values one wants. The second dimension of autonomy is independence; that is, the right of any person to control the circumstances of his or her own life. With this understanding, the practice of informed consent can be justified as enhancing autonomy" (Engelhardt and McCollough 1981). A physician is morally obligated to protect an individual's autonomy by informing patients in a timely and appropriate manner the character- istics of their conditions and the options for treatment. Informed consent not only protects autonomy, but may also lead to goods and values of the therapeutic process such as greater understanding, more trust, and compliance. There are limitations on informed consent for the el- derly or mentally ill because such persons may be judged to have diminished competency. This means less autonomy and less freedom, but to what degree? Who speaks in the best interest of this person? Is there room for manipulation? How is this determination made? Who is competent, and who decides who is competent and by what criteria? Lack of competence cannot be assured without reliable evidence. One route is the legal one, but this may or may not be in the best interest of the individual; therefore, other ways of as- suring this, such as ethics committees or patient rights' ad- vocates, need to be established. The goal needs to be to assist individuals regain their autonomy and self- determination to the greatest degree possible. Staff Morale in Nursing Homes: An Ethical Dilemma The University of Denver study (NCHSR 1981) de- scribed and evaluated various studies on nursing home staffs. It cited attitudes toward the care and treatment of the mentally disabled as one area of concern. One study found that staff were concerned with their ethical and pro- fessional responsibilities in providing care for the mentally ill. Another study of the behavioral problems of nursing home residents noted that staff were particularly frustrated with attempting to deal with the mentally disabled persons. Major concerns identified were problems with medication adjustments; lack of staff resources; lack of family, com- munity, and psychiatric service support; maintaining 258 consistent staff approaches in managing the client's behavior; and use of physical restraint. According to Hall (1983), an estimated 80 to 90 percent of the care provided the elderly in nursing homes is given by aides and orderlies who have had little or no training in working with mentally ill individuals. Rango (1982) argues that in order to provide competent and humane care, nursing home administrators "must remain committed to recruiting, orienting, training, and counseling employees who are as- signed the difficult and psychologically threatening task of caring for a group of residents with physical and mental im- pairments that are severe and usually irreversible." Al- though training, counseling, and providing a supportive atmosphere are crucial morale-sustaining activities, the pursuit of profits may erode that commitment. Rango (1982) believes that the "most arresting indicator and immediate cause of deficient care is the extraordinarily high rate of turnover of professional and nonprofessional staff in the nursing home industry." In some situations, the annual turnover rate for nurses' aides is 100 percent and close to 30 percent for registered nurses and licensed prac- tical nurses. Undesirable working conditions and low pay are only part of the problem. The low morale and subse- quent turnover results from working in an institutional set- ting in which an employee is routinely both a witness and party to the lack of attention to the patients' human needs. Reward systems for nursing home employees in terms of support or recognition are few and far between. Working in a nursing home can be isolated and lonely; often the only motivation for working there is limited job opportunities elsewhere, convenience, or schedule suitability. Another ethical concern Feldman (1983) addresses that is applicable to nursing homes involves the practice of hiring nonprofessionals to do what many professionals wished to avoid--i.e., work with racial minorities or patients of lower socioeconomic status. In many nursing homes, professional staffing is minimal. This frequently means poor blacks, with no training and little supervision, work with other poor blacks or other economically deprived persons. This could be justified on the basis of cultural sensitivity, while at the same time establishing a new form of segregation. The real question is, can an employee give quality care if that per- son's own dignity, uniqueness, and autonomy is not given due respect by supervisors and administrators? If no provision is made for the quality of life of the staff, can they give what they do not possess? Staff need to be involved in decisions that affect their lives and the operation of the facility. 259 Vladeck (1980) describes the "tragedy" of nursing homes with their unloving care, indignities, and neglect. Dickman (1981), commenting on Vladeck's book, considers the root of the tragedy to be more the result of philosophy than of pub- lic policy and contends that no amount of regulations will correct human failings. As long as nursing homes pay low salaries and fail to create a stimulating environment for personnel, the staffing in even the best facilities will be marginal; at worst, it will probably be harmful. We don't need to ask how the principles of respect for persons and justice apply here. How can quality care and ethical prac- tices result from an inadequate quality of life for employees who staff the nursing homes? Implications for Research and Social Policy There is a need to promote in all levels of society a high value for elderly persons, for the aging process, and for the assumption of personal and social responsibility to see that human needs are being met. One way to meet this so- cial need is to support and conduct research. Any research whose outcome will promote the ethical principles of re- spect for persons and the just distribution of benefits and burdens is appropriate to consider. Some of the research and social policy implications of our discussion follow. Many others could, of course, be added. In our discussion of the principles of justice and respect for persons, we noted that the most common claim individ- uals have is that based on need. There is need for appropri- ate mental, physical, and social assessment services using valid and reliable instruments to identify a person's status in terms of physical health, cognitive capacities, interpersonal skills, and self-care abilities. Research studies may need to be conducted on what constitutes normal mental and emo- tional health for the elderly. The development of criteria for psychosocial functioning would help to separate chronic mental illness from less severe mental or emotional prob- lems. Studies on prevention of mental illness in the elderly are also essential. To respect an elderly person's autonomy and freedom, a choice of facilities should be available, whether or not the individual is capable of making such a decision. Relocation may be a very traumatic process. A person's environment may profoundly affect a person's ability to function, con- tributing to either its enhancement or deterioration. A 260 number of research studies have been concerned with volun- tary and involuntary relocations. Pablo (1977) in his review of the literature contends that "the negative consequences of relocation are reduced when the move is voluntary or when the individual is provided a choice. Negative effects are also minimized when the environmental change is not severe, when there is substantial individualized preparation for the change, and when the level of health is stable enough to take the stress involved in the environmental change." Schultz and Brenner (1977) analyze and categorize the research findings reported in the literature according to degree of choice and degree of environmental change (from home to institution, from institution to institution, from home to home). Their findings indicate that the more choice, the more preparation, and the less loss of control in the new environment, the less negative stress response (morbidity and mortality) was experienced. They conclude that respect for the autonomy of persons yields positive re- sults. Involving individuals in decisions that affect their lives is an ethical approach that must not be neglected. Therefore, we need further research regarding the ability and freedom of individuals to make decisions in all aspects of their lives. We also need research on alternative ap- proaches and models to determine appropriateness of placement. The implication for health policy is that, if there are options and choices, the person's needs and preferences must be considered. Nursing home settings may be unneces- sary and inappropriate for some individuals, as may any type of ‘institutionalization or reinstitutionalization. The best mix of patients needs to be researched. Should all mentally ill patients be segregated from healthy elderly patients? What type of environment will promote quality of life? We also need research on how to keep people out of institutions. After an elderly person is satisfactorily placed and assisted in the adjustment process, the appropriateness of the therapeutic milieu should be assessed. Research needs to be conducted to systematically assess the effectiveness of treatment, care, supportive services, and physical setting on the residents’ quality of life. According to Kaplan (1974), spiritual well-being should be a goal of all treatment forms; thus the spiritual component of care in treatment construct should be given "due professional and structural rank." Evaluation of quality care which will promote quality of life must necessarily include research on a number of in- tangibles. Concern with respect for persons and individual 261 autonomy demands providing an opportunity for reflection on the meaning of life, while such reflection is still pos- sible. Research needs to be devoted to the hopes, expecta- tions, and fears of elderly persons (Bok 1974). Other areas that need study are individual willingness, lifestyles, coping mechanisms, spiritual well-being, the ebb and flow of rela- tionships, and environmental influences (Kaplan 1974). With this knowledge, more effective treatment modalities can be initiated. Studies need to be conducted on the prevention and alleviation of social isolation and depression. Suicide is a serious problem among the elderly and the chronically ill; therefore, studies need to be conducted on the factors which lead to suicide and methods of prevention. "Additional re- search is needed to identify contributing factors and the characteristics of those elderly persons who seem most vul- nerable to mental illness" (Hall 1983). Continuity of care, various treatment approaches with provision for client involvement in planning, as well as ef- fective supervision by professionals, constitute patients’ rights. The University of Denver Study (NCHSR 1981) re- commends that guidelines for adequate continuity of care be developed. This could be accomplished with comparative and demonstration projects to design and implement coordi- nated delivery of services which would focus on the integra- tion of housing, services, and innovative case management strategies. Continuity of service could also be studied using longitudinal research as the mentally ill move through the social services system. Assessment of the impact of various factors on the placement process--such as cost, space, and motivation--could yield valuable information for redesigning structures. The roles and most effective contributions of each type of health professional should be a part of this evaluation. Options for nonmedical models need to be studied, especially the functioning of nurse specialists. Studies concerning the quality of life of the staff in nursing homes need to be conducted. This might include studies of staffing patterns, staff training, and career lad- ders, as well as studies on how to prevent burnout and pro- mote morale and a sense of human dignity in professional and nonprofessional staff. An advocacy system for the elderly in nursing homes should be developed and studied; this could include inter- disciplinary team approaches, human values councils, ethics committees, patient representatives, and family involve- ment. Such an advocacy system would work to ensure that patient rights are respected and that individual autonomy and self-determination prevail. 262 In terms of social policy, the University of Denver study recommends that "demonstration projects be con- ducted to determine the effectiveness of alternative funding mechanisms and staff development programs and coopera- tive arrangements with other service providers in increasing the capacity of nursing homes to provide adequate mental health services" (Denver Research Institute/NCHSR/1981). Incentive programs for all forms of long-term care, as well as innovative forms of financing, need to be studied and developed to protect individuals and families. Kaplan (1974) states that "public policy regarding the aged, including allo- cations and services, will be also ethical only when it is comprehensive, adequate, unified, and facilitated, geared not to separable categorical needs but to separable cate- gories of persons defined in terms of uniquely related needs." There are, of course, many other implications for research which could be cited, but let us conclude with some reflections which we hope will inspire these types of research. Conclusion This paper has discussed several ethical considerations impinging on care of the elderly in nursing homes--consider- ations involving human decisions, human repercussions, and an evaluation of both in terms of human well-being. Kaplan (1974) argues for a cohesive public policy to set the tone for other decisions and suggests that the lack of such a policy is itself a reflection of our social concern and our values. Our response to the challenge will depend on how we value the mentally and emotionally elderly in the years ahead. We may make sporadic achievements without changed social values, but if there is to be permanent prog- ress, our value base must become firm and solid. Such firmness is dependent on our willingness to provide the chronically ill and elderly with at least what is provided to others. To establish this firmness, we need to fully accept and back research which stresses the uniqueness of the chronically ill and the aged. A comprehensive system of care which allows for equal--if not preferential--treatment must be interwoven into any discussion of the ethical issues in health care of the chronically ill and the aged. While we must be concerned with cost containment and the allocation of scarce resources, "the ethical demand on social policy is the imperative to modify institutions to serve the human good; then to measure costs and benefits in 263 human terms" (Jonsen 1976). In considering the direction for the future, we must recall the counsel "Do unto others as you would have them do unto you." In this reflection, we can see in the needs of the elderly our own inevitable future. If we are to honor our parents and the elderly in a changing society, we must devise the institutions to assure that they will be honored or, more particularly, given their fair share of the goods of society according to their need (Jonsen 1976). We must help society to become convinced, along with Rabbi A.J. Heschel, that "there is no human being who does not carry a treasure in his soul, a moment of insight, a memory of life, a dream of excellence, a call to worship" (Dickman 1981). The frail elderly and the vulnerable men- tally ill deserve the best that society can offer them. Americans have historically taken pride in themselves as an independent people. The abhorrence of dependency affects the attitudes of the elderly as well as those of the younger generation towards them. Few of us can expect to avoid the awkwardness and dependency of aging. The elderly are one minority group that sooner or later almost all of us will join (May 1983) We began this paper with the maxim that there is a time to be born, a time to die, and a time for every purpose under heaven. Naisbitt (1982) claims that in this time of high technology, we need to follow the ancient Greek ideal of balance. We need to learn to balance the material won- ders of technology with the spiritual demands of our human nature. He believes that interest in the quality of death led to the hospice movement. The more life-sustaining technol- ogy we put into hospitals, the fewer people are born there and die there, and the more people avoid them. But in our custodial care nursing homes, where is the balance--the human touch and compassion? Even without the technology, is there enough caring to become involved? Society has a positive obligation in terms of time and money to provide balance and the human touch to those in need. Samuel Butler warned that "the foundations of our mor- ality are like all other foundations; if you dig too much about them, the superstructure will come tumbling down" (Feldman 1983). If we are to restructure our policies so that they are based on solid ground and on compassionate and human care, we must risk becoming involved to meet the challenge of providing for the elderly and the elderly men- tally ill. Therefore, let us secure our moral foundations with good research and sound social policies based on ethical principles. 264 References Barnett, C.F. Treatment rights of mentally ill nursing home residents. University of Pennsylvania Law Review 126(3): 578-629, 1978. Bok, S. Commentary: In search of policies for the care of the aged. In: Tancredi, L., ed. Ethics of Health Care. Washington, D.C.: Institute of Medicine, National Acad- emy of Sciences, 1974. pp. 304-313, Cohen, E.L. Long-term care: A legislative agenda. In: Pro- ceedings of a conference: The Rights of the Aging: Per- spectives for the 1980's. New York: Brookdale Institute on Aging and Adult Human Development, 1982. pp. 23-27. Dickman, R.L. Must nursing homes be the end of the line? The Hastings Center Report 11(4):63-64, 1981. Engelhardt, T.H., and McCollough, L.B. Ethics. In: Arieti, S., and Brodie, H.K.H., eds. American Handbook of Psy- chiatry. Vol. 7, 2d ed. New York: Basic Books, 1981. pp. 800-801. Epstein, L.J. Open forum: The elderly mentally ill: Finding the right treatment. Hospital and Community Psychiatry 25(5):303-306, 1975. Feldman, S. Out of the hospital, onto the streets: The over- selling of benevolence. The Hastings Center Report 13(3): 5-7, 1983. Glasscote, R.M. Old Folks at Home: A Field Study of Nurs- ing and Board and Care Homes. Washington, D.C.: Amer- ican Psychiatric Association and Mental Health Associa- tion--Joint Information Service, 1976. Hall, M.J. Mental illness and the elderly. In: Vogel, R.J., and Palmer, H.C., eds. Long-Term Care: Perspectives from Research and Demonstrations. Health Care Financ- ing Administration, U.S. Department of Health and Human Services. Washington, D.C.: U.S. Govt. Print. Off., 1983. pp. 483-505. Jonsen, A.R. Principles for an ethics of health services. In: Neugarten, B.L., and Havighurst, R.J., eds. Social Policy, Social Ethics and Aging Society, report prepared for the National Science Foundation, Research Applications Di- rectorate, Division of Advanced Productivity, Research, and Technology. Washington, D.C.: U.S. Govt. Print. Off., 1976. pp. 97-106. Kaplan, J. In search of policies for the care of the aged. In: Tancredi, L., ed. Ethics of Health Care. Washington, D.C.: Institute of Medicine, National Academy of Sciences, 1974. pp. 281-303. 265 May, W.F. Who cares for the elderly. The Hastings Center Report 12(6):31-47, 1982. Naisbitt, J. Megatrends: Ten New Directions Transforming Our Lives. New York: Warner Books, 1982. National Center for Health Services Research. Factors In- fluencing the Deinstitutionalization of the Mentally Ill: A Review and Analysis, by Cicchinelli, L.F. Executive sum- mary prepared by Denver Research Institute, University of Denver. PB 81-238115. Washington, D.C.: U.S. Govt. Print. Off., 1981. Denver, Colo.: Denver Research Insti- tute, University of Denver. pp. 50-119. National Conference on Social Welfare. Long-Term Care: In Search of Solutions. Washington, D.C.: the Conference, 1981. National Institute of Mental Health. Toward a National Plan for the Chronically Mentally Ill, DHHS Pub. No. (ADM)81- 1077, 1981. pp. 55-136. National Institute of Mental Health, Division of Biometry and Epidemiology. Patterns in the Use of Nursing Homes by the Aged Mentally Ill, by Redick, R. Statistical Note No. 107. Rockville, Md.: National Institute of Mental Health, 1976. National Institute on Aging. Toward An Independent Old Age: A National Plan for Research on Aging. Report of the National Research on Aging Planning Panel. U.S. De- partment of Health and Human Services, Public Health Service, National Institutes of Health, NIH Pub. No. 82- 2653, 1982. pp. 178-185. Pablo, R. Intra-institutional relocation: Its impact on long- term care patients. Gerontologist 17(5):426-435, 1977. Pardes, H. Statement to National Conference on Mental Health and the Elderly. A conference sponsored by the Select Committee on Aging, U.S. House of Representa- tives, 96th Congress, April 23 and 26, 1979. Committee Pub. No. 96-186. Washington, D.C.: U.S. Govt. Print. Off., 1979. Paton, H.J., ed. Groundwork of the Metaphysics of Morals. New York: Harper and Row, 1964. Rango, N. Nursing home care in the United States. New England Journal of Medicine 207(14), 1982. p. 887. Schultz, R., and Brenner, G. Relocation of the aged: A re- view and theoretical analysis. Journal of Gerontology 32(3):323-333, 1977. Vladeck, B.C. Unloving Care: The Nursing Home Tragedy. New York: Basic Books, 1980. 266 CHAPTER 19 NURSING HOMES AND THE MENTAL HEALTH OF MINORITY RESIDENTS: SOME PROBLEMS AND NEEDED RESEARCH Wilbur H. Watson, Ph.D. Chairman, Department of Sociology Director, W.E. DuBois Center Atlanta University Atlanta, GA During the past few decades, the proportion and number of individuals age 65 and over has steadily increased. The elderly population now makes up about Il percent of the total U.S. population, or 25.6 million people (Brotman 1982). This compares with 4 percent of the population, or 3 million elderly, in 1900. By the year 2000 projections show there will be some 30 million elderly people in this country. The over-75 and the over-85 age groups are the fastest growing segments of the population in the United States (Butler and Lewis 1982). The rate of growth of the minority elderly in this coun- try is also noteworthy. In 1900, the aged comprised 3 per- cent of the black population, or 261,363 individuals. They now make up 8 percent of the black population or about 2 million people (U.S. Bureau of the Census 1981); 59 percent of elderly blacks reside in the South (Watson 1983). Although complete data are not available on Hispanics, Pacific/Asians, and Native Americans from 1900 to 1980, comparisons of population data from the 1970 and 1980 cen- suses help to show population changes among the elderly in these other minority ethnic groups. Among these groups, only Hispanics showed growth in the proportion of persons aged 65 and older, increasing from 4.2 percent of 9,073,000 Hispanics in 1970 to 4.9 percent of 14,606,000 in 1980 (Manuel and Reid 1982). By contrast, the census data showed no growth in the proportion of elderly persons in the Native American population, although the total population of Native Americans increased from 827,000 in 1970 to 1,418,000 in 1980. The elderly comprised 5.3 percent of Native Americans in both 1970 and 1980. Finally, whereas the total population of Pacific/Asians in the United States more than doubled from 1,539,000 in 1970 to 3,501,000 in 1980 (Manuel and Reid 1982)--partly due to the massive 267 influx of Indochinese refugees since 1975 (National Institute on Aging 1981c)--the proportion of Pacific/Asians 65 years of age and older declined from 6.6 to 6.1 percent. Representation of Blacks and Other Minorities Among Residents of Nursing Homes In many respects, the admission of an elderly person to a nursing home or other long-term care facility is a highly specialized way of meeting a basic human need for shelter. In spite of the often-justified criticism of nursing homes (Moss and Halamandaris 1977; Mendelson 1974), nursing homes can offer the elderly refuge from neglect in an otherwise impersonal and uncaring, highly industrialized, rapidly changing, youth-oriented society (Townsend 1964; Watson and Maxwell 1977). Older persons often have dif- ficulty finding refuge outside an institutional setting, es- pecially when they have no supportive kinship group or are black, poor, disabled, and living in a remote area of rural America (Jackson 1964; Lindsay 1971; Manuel 1982). Black Aged Blacks were substantially underrepresented among elderly nursing home and personal care residents relative to their proportions in the general population in 1977 (NCHS 1979). Although blacks made up about 8 percent of the population over 65 years of age, they accounted for only 3 percent of nursing home and personal care residents (see table 1). The literature shows that both blacks and Hispanics favor family caretaking of the elderly over the use of institutional services (Hill 1972; Watson 1982b). Other findings permit further distinctions between black and white patterns in the use of institutions for long-term care. For example, even in southern States with large populations of black elderly residents, blacks underutilize institutional services for the elderly (Kart et al. 1978). This situation is partly the result of race discrimination in admissions prac- tices of nursing homes (Tokuhata and Smith 1977). How- ever, research has not determined precisely the extent to which race discrimination as opposed to ethnic custom ex- plains black underutilization of institutions for the elderly. Research has also shown dissimilarities among blacks and whites in usage of other types of specialized institutions in the United States. One study reported that elderly whites predominate in State mental hospitals and nonprofit and 268 69¢ Table 1. Minority Representation Among Elderly Nursing Home Residents Total U.S. population Nursing home residents Population group 1963 1977 1963 1977 (000) No. %a No. %a Whites Age 65-74 10,630 13,167 84,400 0.8 18,750 0.1 Age 75-84 4,799 6,275 201,900 4.2 612,050 9.8 Age 85 and over 930 1,874 145,400 15.6 429,100 22.9 Total, age 65 65 and over 16,359 21,316 431,700 2.6 1,059,000 5.0 Blacks and other minorities Age 65-75 981 1,416 5,200 0.5 23,800 1.7 Age 75-84 365 557 5,300 1.5 21,500 3.9 Age 85 and over 73 204 3,300 4.5 20,800 10.2 Total , age 65 and over 1,419 2177 13,800 4.5 66,100 SOURCE: Center for Health Statistics, 1981. Also see Ron C. Manuel, The Aged Black in America. Washington, D.C.: National Urban League, 1982. 3Percentage of total U.S. population. proprietary homes for the aged (Kart and Beckham 1976). This distributional difference may help to explain the growth among black elderly from 5 to 6 percent of the nursing home population in the United States between 1970 and 1977. In other words, the 1970-1977 indicators of growth in the number of blacks in U.S. nursing homes may have been a consequence of State transfers of elderly mental hospital patients (among whom blacks were over- represented) to nursing homes, rather than a change in ethnic custom or change in attitudes of black elderly and their families toward the use of institutional services. Kart and Beckham (1976) argue that the difference in distribution between black and white elderly patients in mental hospitals versus nonprofit and proprietary homes reflects the inability of many blacks to afford the costs of proprietary homes, as well as race discrimination by the managers of nonprofit and proprietary homes, which made public mental hospitals the only alternatives for blacks. These are researchable ques- tions that clearly warrant further study. Equally important questions pertain to the use of nursing homes by Hispanics, Native Americans, and Pacific/Asians. Hispanic Aged Hispanic elderly persons accounted for an estimated 2 percent of all elderly persons in the United States in 1977, but only 1 percent of the nursing home population (U.S. Bureau of the Census 1979; NCHS 1979). Hispanics share a common language but represent diverse cultures in the United States. Included among them are Mexicans, Puerto Ricans, Cubans, and Central and South Americans. The differences in the language and cultural characteristics between Hispanics and the predominant non-Hispanic culture in the United States constitute a major reason for the low use of nursing homes and other health services by aged Hispanics (National Institute on Aging 1981b). In addition to language and culture barriers, racial discrimination helps to account for the low numbers of Hispanics in nursing homes. In a survey by Moss and Halamandaris (1977, Mexican-Americans ranked dis- crimination as the most important reason for their under- representation in nursing homes. The following quote from an interview with a Mexican-American respondent included in a study in Colorado is illustrative: Nursing homes can, and do, discriminate against our people. In my home town alone, 43 percent of the population are Mexican-American, 57 percent are Anglo. The Spanish percentage of the elderly is 13 270 percent. Yet, in the nursing home, there are only two Spanish-surnamed persons in the entire facility and it has 85 beds (Moss and Halamandaris 1977). Besides obstructing their access to nursing homes and other sources of health care, language barriers between Spanish- origin nursing home residents and their predominantly English-speaking caretakers tend to aggravate the mental health conditions of the Spanish-speaking elderly (Butler and Lewis 1982). The cost of nursing home care is another significant factor accounting for the low use of nursing homes by His- panics, as is the emphasis among some Hispanics on taking care of the elderly at home (National Institute on Aging 1981b). Native American Aged Despite considerable growth in the number of elderly Native Americans between 1970 and 1980, there was no significant growth in the number of Native Americans in nursing homes. The absence of nursing homes on reserva- tions where the great majority of Native Americans still live is significant in this regard. The historical, political, and economic degradation of Native Americans in the United States continues insofar as the Federal Government, through the Bureau of Indian Affairs and the Indian Health Service, along with many State governments, still contri- butes much less than what is needed to enhance the mental health and welfare of older Native Americans (Butler and Lewis 1982; National Tribal Chairman 1976). Some States, for example, have refused to license nursing homes on reser- vations because of disputes about State versus tribal juris- diction of reservations (National Tribal Chairman 1976; Moss and Halamandaris 1977). As a result, Federal funds under the Hill-Burton Act that can only be disbursed to as- sist in the construction of State-licensed nursing homes have been withheld (National Tribal Chairman 1976; Butler and Lewis 1982). Although about | percent of the Native American pop- ulation (about 5,000 elderly persons) clearly need nursing home care, recent testimony before the Senate Subcommit- tee on Aging revealed there are a total of only 200 nursing home beds on all the reservations in the United States (Moss and Halamandaris 1977). Some elderly Indians are, of course, in nursing homes, mental hospitals, and other facil- ities outside of reservations; but the numbers are small compared to the estimated thousands that need 24-hour care sional Tribal Chairman 1976; Moss and Halamandaris 1977). 271 Several reasons have been given for the absence of older Native Americans in most nursing homes (i.e., those not owned, operated, or staffed by Indians). One factor relates to the social and cultural differences between el- derly Indians in need of care and the ethnic characteristics of staff who deliver services in most nonreservation nursing homes. Nursing home administrators and medical directors in most licensed State facilities outside of reservations tend to frown upon the practices of the Indian medicine men and those Indians who use their services (Moss and Halamandaris 1977; Watson 1984). Some nursing homes even forbid medi- cine men to visit sick residents. Second, many Indians can- not afford nursing home care. In the study by Moss and Halamandaris (1977), personal choice and discrimination ranked third and fourth, respectively, among the reasons cited by Indians as to why they were underrepresented in nursing homes. Pacific/Asian Aged Some 18 subethnic groups including Japanese, Chinese, Filipinos, and Koreans are subsumed under the Pacific/Asian label in the United States (Administration on Aging 1978). There were 213,561 members of this group aged 65 years and older in this country in 1980 (Manuel and Reid 1982). As a result of years of social rejection, discrimination, and in- complete families in the United States, some of which resulted from the Asian exclusion laws and white racism (National Institute on Aging, 198lc; Kitano 1974), many of today's older Pacific/Asians live in ethnic enclaves, some live alone, and very few are found in nursing homes. According to Moss and Halamandaris (1977, p. 118), despite a clear need for nursing home care for some elderly Pacific/Asians, few receive it. The researchers cite several reasons for the low incidence of Pacific/Asians in nursing homes. First, the tradition that the elderly be respected is still widely honored and leads many families to keep older members at home in late life. Thus Moss and Halamandaris (1977) observe that "despite the fact that some 20 percent of San Francisco's Chinatown are over 65, there is only one Chinese-owned and -operated nursing home in that city." Second, few nursing homes have bilingual staff and dietetic practices that honor the mealtime traditions of Pacific/ Asians, and are acceptable in other ways. According to Butler and Lewis (1982), language and social and cultural factors are among the most significant reasons for the near-absence of Pacific/Asian elderly from 272 nursing homes. Personal choice was of secondary impor- tance and discrimination was least important, according to the survey by Halamandaris (1977). Researchable Questions Regarding Blacks and Other Minorities in Nursing Homes The lack of systematic research on the prevalence of mental disorders associated with advancing age has been discussed elsewhere in this volume. Even fewer studies have been done on mental disorder and health care of elderly blacks and other minorities, either in or out of nursing homes. The following is a partial list of researchable ques- tions pertinent to this issue. Epidemiology of Mental Disorder Among Older Blacks and Other Minorities | What is the prevalence of elderly blacks with diagnoses of mental disorder in nursing homes? Does the incidence of mental disorder, or certain categories thereof, differ for blacks and other minorities in comparison to el- derly white persons in nursing homes? 2. To what extent are the kinds of mental disorders most frequently diagnosed among older blacks, Native Americans, Hispanics, and Pacific/Asians distinguished from the disorders found among their nonminority counterparts in the United States? Class and Ethnic Group Differences in the Use of Nursing Home Services 1. According to reports of the Public Health Service and others, elderly Native Americans, Hispanics, and Pacific/Asians are even less well represented among nursing home populations than are blacks. To what extent are these differences between minorities the result of differential ethnic group operation of nursing home facilities, socio- economic, and cultural differences among these groups, and differential effects of race or ethnic group discrimination? 2. The mental health and welfare of Native Americans on reservations and their access to nursing homes on and outside of reservations represents a special case because of the jurisdictional questions often raised by con- flicting interpretations of treaty agreements between Native American tribes and the U.S. Government, on the one hand, and the prerogative of States to regulate licensing of nursing homes and other service facilities within a State. 273 Moreover, while close ties with family and kin are still a major means of meeting the health care needs of older dis- abled Native Americans, the exodus from reservations of young ablebodied members has made it increasingly difficult for families to cope with their dependent elders. More nursing homes on reservations are urgently needed (National Tribal Chairman 1976). Research should be undertaken to answer the following questions: ® On reservations that don't have nursing homes but do have large numbers of older persons in need of 24-hour nursing or mental health care, how do families or tribal units organize to provide health care and sustain the sick and mentally impaired persons in the family or larger community? ® How significant a role does the Indian medicine man play in the treatment of mental disorder among older Native Americans, either in the ab- sence of nursing homes or in nursing homes on and off reservations? ® How do the diagnostic and treatment practices of traditional approaches to healing (for example, the techniques of the medicine man) compare with biomedical approaches to the diagnosis and treatment of mental disorder? We need comparative research on differential depend- ency among class and ethnic groups on nursing homes and other secondary institutions as sources of primary health care for older family members. We have seen that there is considerable variation among minority ethnic groups in the extent of their representation in nursing homes. If we are genuinely concerned about variations in patterns of minority usage and the quality of care in these facilities, we will need to study both users and nonusers of nursing homes, not only resident groups. We suggest the following researchable questions in this area of inquiry: L. To what extent do family traditions, such as filial piety among Pacific/Asians and Hispanic families, prevail over economic, social, and emotional costs of home main- tenance of a mentally impaired older person when the dis- ability characteristics would clearly point, in all other circumstances, to a need for the kind of specialized care that is best provided by a skilled nursing facility? 2. Are there any concrete illness conditions or health care and service delivery problems that can be sys- tematically demonstrated to have their source in language barriers or social conflict between non-English-speaking nursing home residents and their long-term caregivers? 274 3. To what extent do traditional Native American beliefs in family and tribal self-care, and the health care practices of tribal medicine men preclude Native American use of public mental health services and nursing homes for long-term care? b4. To what extent is the relative absence of blacks in nursing homes a result of custom as opposed to race dis- crimination, economic costs, and other factors? Staffing Patterns and Therapeutic Interactions l. When members of the medical and allied health professions are predominantly white and culturally different from the elderly black and other minority mental patients who are increasingly populating nursing homes, to what ex- tent are the emotional disorders of these patients aggra- vated by language barrier, and the misunderstanding and conflict that occasionally develops in therapist-patient interactions? 2. Ethnic and racial prejudices and discriminatory behavior in social relations are pervasive in American society. Therapeutic relationships as interaction processes are as subject to ethnic and racial prejudice and discrimina- tory behavior as are other kinds of role relationships in society. When evaluating first-admission elderly minority patients, are the diagnoses of nonminority therapists in- fluenced by a patient's race? For example, might they tend to exaggerate the seriousness of the illness in contrast to their diagnoses of first-admission elderly white patients who are similar in all other behavioral and demographic charac- teristics, except race? Would the diagnoses of minority patients differ if these patients were evaluated by minority- member health professionals? 3. Do minority and nonminority staff show patterns of preferential interaction and differential support for their minority/nonminority counterparts among the mentally ill patients of nursing homes? If so, how does such interaction affect minority patients as compared to white patients? Conclusions The need for research on mental illness and health care of the elderly in nursing homes is well established. Major questions remain unanswered pertaining to the prevalance and etiology of mental disorder; race, class, and sex dif- ferences associated with different disorders; self-images of the aged; attitudes of treatment and line staff toward older mental patients; and the therapeutic consequences for the 275 mentally ill elderly patient whose health care is the respon- sibility of persons with little or no previous training or work experience with the mentally ill. The challenges for policy- makers and practitioners are numerous. To facilitate their decisionmaking, we need a broadly based program of re- search to address the many issues raised in the foregoing discussion. References Administration on Aging. Pacific/Asian Elderly Research Project: Final Report. Prepared under Grant No. 90-A-980/02. Los Angeles, May 1978. Birren, J., and Renner, J. Concepts and issues of mental health and aging. In: Birren, J., and Sloane, R.B., eds. Handbook of Mental Health and Aging. Englewood Cliffs, N.J.: Prentice-Hall, 1980. Birren, J., and Sloane, R.B., eds. Handbook of Mental Health and Aging. Englewood Cliffs, N.J.: Prentice-Hall, 1980. Brody, E.M. Aging. In: Encyclopedia of Social Work. Vol. I. 17th ed. Washington, D.C.: National Association of Social Workers, 1977. Brotman, H.B. and Allan, C. Chartbook on Aging in Amer- ica: Supplement. Washington, D.C.: 1981 White House Conference on Aging, Feb. 1982. Busse, E.W., and Pfeiffer, E., eds. Mental Illness in Later Life. Washington, D.C.: American Psychiatric Associa- tion, 1973. Busse, E.W., and Pfeiffer, E., eds. Behavior and Adaptation in Late Life. Boston: Little, Brown and Co., 1977. Butler, R.N. Why Survive? Being Old in America. New York: Harper and Row, 1975. Butler, R.N., and Lewis, M.I. Aging and Mental Health: Positive Psychosocial Approaches. St. Louis: C.V. Mosby Co., 1982. Cohen, G.D. Approach to the geriatric patient. Medical Clinics of North America 6(61):855-866, 1977. Cohen, G. Prospects for mental health and aging. In: Birren, J., and Sloane, R.B., eds. Handbook of Mental Health and Aging. Englewood Cliffs, N.J.: Prentice-Hall, 1980. 276 Garvin, R.M., and Burger, R.E. Where They Go to Die: The Tragedy of America's Aged. New York: Dalacorte Press, 1968. Goffman, E. Asylums. New York: Doubleday-Anchor, 1961. Gubrium, J.F. Living and Dying at Murray Manor. New York: Saint Martins Press, 1978. Hill, R.E. The Strength of Black Families. New York: Emerson Hall, 1972. Jackson, H.C. Double Jeopardy: The Situation of Older Blacks. New York: National Urban League, 1964. Jackson, J. Epidemiological aspects of mental illness among aged blacks. Journal of Minority Aging 76-87, 1979. Kaplan, O., ed. Psychopathology of Aging. New York: Academic Press, 1979. Kart, C., and Beckham, B. Black-white differentials in the institutionalization of the elderly. Social Forces 54:- 901-910, 1979. Kay, D., and Bergmann, K. Epidemiology of mental dis- orders among the aged in the community. In: Birren, J., and Sloane, R.B., eds. Handbook of Mental Health and Aging. Englewood Cliffs, N.J.: Prentice-Hall, 1980. Kitano, H.H.L. Race Relations. Englewood Cliffs, N.J.: Prentice-Hall, 1974. Kramer, M. Issues in the development of statistical and epidemiological data for mental health services research. Psychological Medicine 6:185-215, 1976. Kramer, M.; Taube, A.; and Redick, R.W. Patterns of use of psychiatric facilities by the aged: Past, present and future. In: Eisdorfer, and Lawton, M., eds. The Psycholo of Adult Development and Aging. Washington, B.C American Psychological Association, 1973. Lindsay, I. The Multiple Hazards of Age and Race. Washington, D.C.: U.S. Govt. Print. Off., 1971. Manuel, R. The Aged Black in America. Washington, D.C.: National Urban League, 1982. Manuel, R.C., and Reid, J. A comparative demographic pro- file of the minority and nonminority aged. In: Manuel, R.C., ed. Minority Aging: Sociological and Social Psy- chological Issues. Westport, Conn.: Greenwood Press, 1982. pp. 31-52. Mendelson, M.A. Tender Loving Greed. New York: Vintage Books, 1975. Miller, M. Suicide After Sixty: The Final Alternative. New York: Springer Publishing Co., 1979. 277 Moss, F. E., and Halamandaris, V.J. Too Old, Too Sick, Too Bad: Nursing Homes In America. Germantown, Md.: Aspen Systems Corp., 1977. National Center for Health Statistics. National Nursing Home Survey, 1977: Summary for the United States Vital and Health Statistics, Series 13, No. 43. Washington, D.C.: U.S. Govt. Print. Off., 1979. National Institute on Aging. Report of the Mini-Conference on Black Aged. The White House Conference on Aging (1981). Washington, D.C.: U.S. Govt. Print. Off., 1981a. National Institute on Aging. Report of the Mini-Conference on Hispanic Aging. The White House Conference on Aging 1981). Washington, D.C.: U.S. Govt. Print. Off., 1981b. National Institute on Aging. Report of the Mini-Conference on Pacific/Asian Elderly: Pacific Asians, the Wisdom of Age. The White House Conference on Aging (1931). Washington, D.C.: U.S. Govt. Print. Off., 1981c. National Tribal Chairman's Association. National Indian Conference on Aging: Summary Report. Phoenix, Ariz.: the Association, June 15-17, 1976. Poussaint, A.F. The mental health status of blacks, 1983. In: Williams, J.D., ed. The State of Black America, 1983. New York: National Urban League, 1983. pp. 187-239. Stanton, A.H., and Schwartz, M.S. The Mental Hospital. New York: Basic Books, 1954. Szasz, T.S. Malingering: "Diagnosis" or social condemnation. In: Fredison, E., and Lorber, J., eds. Medical Men and Their Work: A Sociological Reader. Chicago: Aldine- Atherton, 1972. pp. 353-368. Tokuhata, G.K., and Smith, M.W. Evaluation of Nursing Homes in Philadelphia and Allegheny Counties: Services for Minorities. Harrisburg: Bureau of Health Research, Pennsylvania Department of Health, June 1977. Townsend, P. 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Demographic and social aspects of older blacks, 1970-1980: An analysis with policy implications. In: McNeely, R.L., and Cohen, J., eds. Aging in Minority Groups. Belmont, Calif.: Sage Publications, 1983. Watson, W.H., ed. Black Folk Medicine: The Therapeutic Significance of Faith and Trust. New Brunswick, N.J.: Transaction Books, 1984. Watson, W.H., and Maxwell, R.J. Human Aging and Dying: A Study in Sociocultural Gerontology. New York: Saint Martins Press, 1977. Zarit, J. Aging and Mental Disorders: Psychological Approaches to Assessment and Treatment. New York: Free Press, 1980. 279 CHAPTER 20 COLLABORATION BETWEEN MENTAL HEALTH CENTERS AND NURSING HOMES: RESEARCH ISSUES Jonathan L. York, Ph.D. Executive Director Northeast Guidance Center Detroit, MI This national conference on mental illness in nursing homes is evidence that more attention is now being paid to the quality of life in our Nation's long-term care facilities. The research issues examined during this conference and in this current volume address many of the clinical and social policy issues that can have a major long-range impact upon care of the mentally ill elderly. Many of these findings have immediate relevance for practice applications in teaching nursing homes and in the larger, nonprofit long-term care facilities. However, there may be extensive and damaging lag time before the findings of this conference have any im- pact whatsoever upon the majority of nursing home patients, i.e., those in small and medium-sized proprietary nursing homes. Because these smaller facilities probably have as much as 70 to 80 percent of the total nursing home popula- tion, we need to examine some ways in which the care and treatment of the mentally ill elderly in the "average" nursing home can be improved without delay. Two basic assumptions underlie the discussion that follows: 1. The "average" nursing home will continue to be the primary locus of treatment for the mentally ill el- derly. This group is not limited to those who have been deinstitutionalized and previously diagnosed as mentally ill, but includes those who have devel- oped behavioral, emotional, and mental disorders late in life. 2. Nursing homes do not have now, and will not have at any time in the near future, the internal re- sources, either staff or economic, needed to deal humanely and effectively with older persons ex- hibiting behavioral or emotional problems. These assumptions bear further examination. First of 281 all, nursing homes will undoubtedly continue to exist, and, even if we vastly expand the alternatives to institutionali- zation, the nursing home population will remain large. Even after the so-called process of deinstitutionalization is "complete," there will still be a significant number of older persons who begin to exhibit behavioral, emotional, or psy- chological problems. Many, if not most, of these persons will be placed in nursing homes. Second, few nursing homes today have the resources necessary to deal with these mental health problems. Very few nursing homes employ psychiatrists, psychologists, or clinical social workers. Most nursing home physicians are general practitioners who devote only a small portion of their time to their nursing home clientele. There is rarely any "mental health expert" who works for the nursing home or is even available on a regular basis; even if there were, this person could not possibly address the needs of upwards of 50 percent of the residents who exhibit psychiatric prob- lems. Finally, this dearth of resources is unlikely to change in the near future. The trends for cutting health care costs make it highly unlikely that new rates of reimbursement for nursing home care or new funding mechanisms will allow a large-scale infusion of mental health expertise into the long-term care setting. Therefore, it appears that we will have to look outside of the nursing home system for the special expertise that can adequately address psychiatric and behavioral problems in the nursing home. For this reason, one segment of the present conference focused on the collaboration between nursing homes and community mental health centers and related treatment organizations. While many specific treat- ment modalities and techniques could be discussed here, this paper will highlight some specific research approaches that can be undertaken to foster and improve the effectiveness of such collaborative efforts. Cost-Effectiveness In spite of our professed concern for the best possible treatment, economic considerations obviously fuel a great deal of both official and unofficial health policy. Probably nowhere has this been a greater factor than in the nursing home industry. Unlike most other human service organi- zations in our society, nursing home care is largely pro- prietary in nature. Therefore, the first question that must 282 be asked about collaborations between community mental health centers and nursing homes is whether they are cost- effective. Of course, if we were to look only at the initial outlays necessary to bring these collaborations into exist- ence, we would see clearly the cost of services. The impor- tant question, however, is how much this outlay can be off- set by other savings. Potential areas for savings include prevention of institutionalization in State hospitals and general hospital psychiatric units, reduced cost of psycho- tropic medication, reduced cost of physical illnesses and hospitalizations brought about by inappropriate or excessive psychotropic medication, and cost of staff turnover or ex- cess nursing time required by inappropriate management of problem patients. These costs are exceedingly difficult to quantify; however, if collaborative relationships are to oc- cur on anything other than an ad hoc or experimental basis, the cost impact of such problems must be carefully examined. Analyzing the cost-effectiveness of mental health interventions in nursing homes is trickier than it sounds. First of all, it is difficult to quantify the cost of improper care for mental health problems. Furthermore, because many mental health interventions are not funded through the same mechanisms as nursing home medical care, re- lating the different sets of costs and outcomes is confusing. As difficult as these studies are, however, they are essential to the development of further collaborative pro- grams. On the local level, they would assist agencies, such as community mental health centers, in presenting their services for purchase to nursing home proprietors and would assist nursing home administrators in making such purchase decisions. On the national level, cost-effectiveness studies will provide needed information to assist policy makers in determining reasonable reimbursement levels and how many of such programs to stimulate. Effectiveness of Different Models of Collaboration While all nursing home-mental health collaborations in- volve an exchange between two or more organizations with different expertise and needs, the similarity ends there. Questions of effectiveness should be addressed before more such collaborative programs are fully developed. First, the different types of organizations which can collaborate with nursing homes to improve residents' mental health care should be examined. While most of the collaborations to 283 date have focused on community mental health centers, it may be as appropriate or effective in many areas to stim- ulate nursing home linkages with State psychiatric hospi- tals, private practitioners, or even universities. However, the nature of the collaborating organization is probably not as significant as the nature of the collab- oration itself. Therefore, we must begin to examine the relative effectiveness of different models of nursing home collaboration. In the past, these programs have ranged from direct treatment, in which a mental health center provides individual or group therapy to nursing home patients, to a consultative approach of staff training and case confer- ences. Some of these programs have focused on medical models while others have used social/psychological models. And there have been different levels at which consultation and training have occurred, ranging from the administrator down to the aides, orderlies, and housekeeping staff. Other models that have been tried on a limited basis involve a mental health agency actually funding certain services--for example, establishing a separate wing in the nursing home for mentally ill patients. Before major program develop- ment and dissemination efforts take place, research efforts must examine the effectiveness of each of these models in different settings and situations. In summary, there are many possible ways that nursing homes and community mental health centers could collabo- rate. Included among these are the following: I. Community mental health center involvement in development of policies and procedures in the nursing home; 2. Community mental health center participation in staffing rounds, case conferences, case consulta- tions, etc.; 3. The development of direct treatment groups by mental health center staff for a wide range of nursing home problems including depression, or- ganic brain syndromes, alcoholism, etc.; 4. Nursing home staff participation in mental health center inservices and staffing; 5. Collaboration between community mental health center psychiatrists and nursing home physicians; 6. Staff training for nursing home employees at all levels provided by community mental health center staff; 7. Establishment of a special treatment wing for the mentally ill in the nursing home, with staffing or 284 consultation provided by the community mental health center staff; Preadmission evaluation and screening by com- munity mental health center staff and involvement with families at the time of admission; and Assistance to the nursing home in removal of prob- lem patients for short-term psychiatric treatment or permanent placement. Other Research Issues Cost-effectiveness and program models are clearly the most important unanswered concerns; however, several other issues merit consideration: How do different State reimbursement policies and regulations affect the development of mental health program collaboration? What specific factors and initiatives have caused some States to develop more collaborations than others? How do Medicaid policies, the home and com- munity services waiver, and aspects of Tax Equity Fiscal Responsibility Act of 1982 (TEFRA) affect development of collaborative programs? What role can alcoholism and substance abuse treatment agencies play in nursing home training and consultation? What local conditions have stimulated mental health centers and nursing homes to develop existing collaborative programs? Are these local conditions unique, or have they been unrecognized elsewhere? What types of dissemination efforts (and by whom) would most effectively stimulate further development of the types of collaborative pro- grams that already exist on a limited basis? What role can volunteers, families, and other nonmental health providers play in addressing the needs of the mentally ill in nursing homes? Summary Many complex and interrelated factors have led to the nursing home becoming the primary locus of treatment for the mentally ill elderly. Likewise, improving this treatment 285 will require a variety of actions at the local, State, and national levels. While not necessarily a long-range solution, collaborative relationships between mental health centers and nursing homes can immediately increase the resources available to address the mental health problems of nursing homes' problem patients. Clearly patients will benefit from such an approach; but only research can determine whether such collaborations are also cost-effective. In the time of a growing aging population and shrinking health care re- sources, failure to investigate this possibility would be extremely shortsighted. 286 CHAPTER 21 FEDERAL REIMBURSEMENT FOR LONG-TERM CARE OF THE MENTALLY ILL Tom Jazwiecki and Steve Press American Health Care Association Washington, DC The topic of long-term care, and more specifically nursing home services, evokes different images to different persons. To some, nursing homes are providers of intensive rehabilitative services which might otherwise have to be provided in an acute care hospital facility. To others, nurs- ing homes are custodians providing geriatric care to the aged and disabled. Many nursing home residents also suffer from reduced cognitive ability resulting from physiological or psychological problems sometimes hastened by the aging process itself. The truth is that nursing homes provide care to many types of individuals, including those with mentally impaired functional abilities. The long-term care population is expected to increase dramatically in the near future. The Census Bureau esti- mates that the 65-and -older population will increase sig- nificantly during the next 20 years, while the over-85 population will more than double during this period (U.S. Bureau of the Census 1982). Demographics of our aging process alone will account for a dramatic increase in the demand for long-term care services. However, the long- term care population is not restricted to the elderly. About one-third of impaired persons in both the community and in nursing homes are under age 65. Long-term care currently represents about 13 percent of all health care expenditures or some $3! billion out of the $247 billion expended during 1980. Institutionalized nursing home care cost $20.7 billion in 1980 and represents the bulk of long-term care expenditures. The growth in nursing home expenditures has been significant and since 1975 has repre- sented the fastest growing component of personal health care expenditures. Between 1975 and 1980, these expen- ditures grew 105 percent. Nursing home costs alone ac- counted for 9.5 percent of all personal health care expend- itures during 1980 and are increasing more rapidly than the general economy (Gibson and Waldo 1981). 287 These increasing expenditure levels for long-term care have resulted in a considerable dependency on public assist- ance programs to help pay for these services. Currently, the financing of long-term care is primarily from two sources: public assistance programs and private individual funding. There is virtually no private health insurance coverage for long-term care other than minimal coverage for rehabilitative care following a short-term stay in an acute care hospital. Approximately 57 percent of total nursing home expenditures are paid for through public funds. Forty-two percent of total nursing home expendi- tures are paid directly by nursing home residents or their families. Only about 1/2 of | percent of total nursing home expenditures are reimbursed from private insurance benefits (Fox and Clauser 1980). The majority of public long-term care programs are funded through the Department of Health and Human Services under titles XVIII (Medicare), XIX (Medicaid), or XX (grants to States). Medicaid is the biggest source of public funding for long-term care. In 1979, about 87 percent of the $10 billion in public funding for nursing home care was provided by the Medicaid program. About 40 percent of all Medicaid program expenditures was allocated for institu- tionalized nursing home services. Medicaid is therefore by far the biggest single payment source for nursing home serv- ices. By contrast, Medicare pays less than 3 percent of all nursing home expenditures (Fox and Clauser 1980). Medicare payment for nursing home services covers only skilled nursing care and pays for no more than 100 days of services. In practice, Medicare pays for less than 30 days of skilled nursing home coverage per patient on the aver- age. The Medicare facility payment rate is a retrospective rate derived from the Medicare Principles of Reimburse- ment Health Care Financing Administration (HCFA) Health Insurance Manual No. 15. These principles determine the average routine cost per day to a facility for each Medicare patient on the basis of allowable costs as defined by the program. Allowable routine costs are further restricted by statutory limitations. Ancillary service costs are added to routine costs, but are computed on the basis of cost-to- charge ratios. In addition, Medicare allows a return on owners' equity for proprietary care providers. However, because of its cost-averaging principles, its insensitivity to the costs associated with heavier-care Medicare patients, and various administrative burdens, many nursing home administrators view the Medicare program as a less-than- attractive reimbursement program. 238 Federal law only requires a State to pay for skilled nursing facility and intermediate care facility services under the Medicaid program based on rates that are rea- sonable and adequate to meet the costs which must be incurred by efficiently and economically operated facil- ities. As a result, most States use a cost-based payment system to reimburse for nursing home facility services. These cost-based systems of facility payment have two important variables: (1) the determination of allowable costs and (2) the procedures for setting rates. Allowable costs under the Medicaid program are based upon a specific State's defined set of cost and accounting principles. The majority of States have adopted the defi- nitions of allowable costs as specified in the Medicare prin- ciples of reimbursement, although a considerable number have either modified the Medicare principles or adopted their own principles entirely. Even those States which have moved away from a totally cost-based payment system-- such as Utah, which has a partially negotiated payment rate system--still make references to allowable cost definitions. Federal law also requires all States to have cost reporting and auditing provisions in order to maintain program fiscal responsibility. The majority of allowable costs incurred by nursing home facilities can be grouped into administrative and gen- eral costs, patient care costs, and capital or property- related costs. Administrative and general costs include ad- ministrative salaries, legal and accounting services, office supplies, insurance, utilities, laundry, maintenance, and bookkeeping services. Patient care costs include nursing and rehabilitative services, professional consultative serv- ices, social services, dietary services, and other direct patient-oriented costs. Capital or property-related costs include depreciation, mortgage interest, real estate taxes, and leasing. While the categorization of costs differs among States, administrative costs typically account for between a quarter and a third of a nursing home's total costs. Pro- perty costs typically account for another 10 to 15 percent of a facility's total costs. Patient care, however, represents the bulk of a nursing home's costs, generally accounting for up to 60 percent of total expenditures. The various State systems for setting Medicaid rates can be grouped into four general categories: I. Retrospective facility-specific rate 2. Prospective facility-specific rate 3. Uniform class rate 4. Combination or hybrid method 289 The retrospective facility-specific rate-setting method basically involves full-cost reimbursement subject to a year- end retroactive adjustment to reflect a facility's actual in- curred allowable costs. This methodology is comparable to reimbursement under Medicare, although most of the State's retrospective systems differ from Medicare as to what costs are allowable. Prospective facility-specific rate-setting systems es- tablish a payment rate for each facility for the upcoming year based on the facility's recognized costs in a prior re- porting period adjusted to reflect inflation. In general, these systems forecast base-period costs into a future rate-setting period using an inflation index. About 25 States use this method, most of them with definitions of allowable costs. Five States use a uniform class rate method for Medi- caid nursing home reimbursement, paying the same flat rate to all facilities in the same class. The remaining States incorporate payment elements of some or all of the above rate-setting systems. Most of these combine retrospective, prospective, and flat-rate payment methodologies. Seven States plus the District of Columbia use a combination rate-setting method. To further complicate matters, five States base Medi- caid reimbursement on a facility's case-mix characteris- tics. Thus, Illinois, Maryland, Ohio, Washington, and West Virginia consider the cost of a facility's patient character- istics in determining payment rates. However, the level of funding commitment among these systems varies consider- ably when translated into facility payment rate levels. While the Maryland rate level is considered fairly represent- ative of a nursing home's patient care costs, the Illinois sys- tem represents one of the lowest average payment rates in the country. Payment methods involving patient assessment generally convert patient disability, care requirements, or service intensity into monetary terms through activities of daily living (ADL) determinations, point counts, or other conversion methods to determine the level of facility payment. Since the implementation of the 1980 Budget Recon- ciliation Act, however, many States have severely con- strained the levels of spending on nursing home care in direct response to the States' own budgetary and fiscal problems. Some States have taken steps to actually reduce provider payment rates, while others have attempted to slow the rate of growth in overall expenditures on long-term care. Other States have attempted to curtail long-term 290 care expenditures by dissuading private capital investment in the nursing home industry. Some States have used the direct approach to limit the building of nursing homes by restricting "certificate of need" applications or through outright moratoriums on new nursing home construction. Many States more subtly dissuade the building of nursing homes through restrained reimbursement programs. Lately, several States have begun to tighten up on eligibility stand- ards and coverage criteria as yet another way to control expenditure growth. With projections of needed nursing home beds conserv- atively estimated at 1.2 million additional beds by the year 2000, enormous amounts of private (and public) capital in- vestment will be necessary just to maintain the current level of accessibility for patients needing nursing home services (Valiante 1984). In recognition of this growing demand for care of an increasingly aged population, some States have recently developed a more progressive view towards capital formation and capital financing in the long- term care industry, adopting Medicaid reimbursement methods that recognize capital asset appreciation and en- courage greater equity involvement by owners. West Vir- ginia and Maryland both use a fair rental value approach to determine allowable property cost reimbursement. These innovative systems can be cost-effective and appear to be the most reasonable approach to promote quality care, as- sure access to services, and encourage the economical de- livery of services while paying a fair price for services rendered to an increasingly large population needing long- term care services. Long-Term Care for the Mentally Ill: A Policy Overview Federal policy in recent years has been to accelerate the deinstitutionalization of the mentally ill from State mental hospitals. Many of the mentally ill have been trans- ferred to nursing homes, but Federal policy has made this particular transition difficult to accomplish. Medicare, for example, will not reimburse for psychiatric care in a nursing home. The Health Care Financing Administration, for another, has moved in an active way against State Medicaid programs for services rendered in nursing homes which it finds to be institutions for mental disease (IMDs). In both cases, the ramifications have been serious for the mentally ill. In some cases, those suffering from mental ailments are 291 unable to obtain placement in long-term care facilities. In others, nursing homes trying to avoid being classified as in- stitutions for mental disease have tended to deemphasize the mental health diagnoses of their patients. Medicare Medicare limits coverage of mental health services through community programs to care provided in physician- directed clinics and limits outpatient psychiatric service benefits to a maximum of $250 per year. Inpatient services under Medicare must be delivered in psychiatric facilities, where a lifetime benefit of only 190 days of treatment is allowed. Clearly, to change this situation, issues that need to be addressed include reimbursement for nonphysician mental health professionals, certification of skilled nursing facil- ities (SNFs) as providers of mental health services, and development of agreements between community-based pro- viders of mental health services and SNFs for providing care to residents of long-term care facilities. As certified Medi- care providers, SNFs are already considered appropriate sites for the delivery of Medicare services. The addition of mental health services would enable the facility to meet the total needs of residents. Medicaid Recent Federal Activities. As mentioned earlier, the Health Care Financing Administration (HCFA) in recent years has disallowed Federal financial participation in State Medicaid programs for services rendered in nursing homes determined to be IMDs. The Departmental Grant Appeals Board has already upheld HCFA disallowances in four States (December 4, 1981). All four States have appealed to the Federal courts; two States (Minnesota and Connecticut) have received Federal court decisions from both the U.S. District Court and the U.S. Court of Appeals. Unfortu- nately, the decisions were not in agreement; thus the un- certainty in this area continues. Meanwhile, State Medicaid programs continue to be very careful in reimbursing nursing homes for their care of the mentally ill. In the Minnesota case, the State secured a declaratory judgment holding that the Department of Health and Human Services (HHS) acted improperly in disallowing Medicaid payments made for services provided to the mentally ill in three intermediate care facilities in that State. The Eighth Circuit Court of Appeals supported this view and held that HHS had acted improperly in focusing on the diagnosis of 292 patients in its decision that the ICFs at issue were also IMDs. In the Connecticut case, the district court judge ruled that HHS also had improperly disallowed Medicaid payments for services to the mentally ill at an ICF. The judge held that the statutory provisions relied on by HHS only precluded Medicaid payments for services provided at "mental hospitals" which are "facilities which . . . provide total care to mental patients." If this decision had been upheld by the Second Circuit Court of Appeals, this would have clearly allowed reimbursement for services to the mentally ill in nursing homes under Medicaid. Unfortu- nately, the Second Circuit reversed the district court decision, indicating its belief that the "IMD definition adopted by HHS and supplemented by its [HHS'] internal criteria reasonably implements Congress' intent" to exclude the treatment of the mentally ill in nursing homes. Ob- viously, this decision will do much to enhance the current HHS position on this issue and is likely to bring about fur- ther disallowances against State Medicaid programs. Connecticut has appealed this case to the U.S. Supreme Court. Legal Background. The Federal position is based on the following laws and regulations: Section 1905(a) of the Social Security Act provides that the term medical assistance shall not include payments "with respect to care or services for any individual who has not attained 65 years of age and who is a patient in an institution for tuberculosis or mental diseases" (42 U.S.C. section 1396d(a)(B)). Congress enacted the original IMD exclusion in 1950. Current HHS regulations define an institution for mental diseases as an institution that is "primarily engaged in pro- viding diagnosis, treatment or care of persons with mental diseases" (42 C.F.R. section 435.1009). According to the regulations published by HHS, whether an institution is an IMD is to be determined by its "overall character as that of a facility established and maintained primarily for the care and treatment of individuals with mental diseases." The Department of Health, Education and Welfare (the predecessor to HHS) appears to have paid little attention to the IMD exclusion until the mid 1970s. In late 1975, the Medical Services Administration of the Social and Rehabili- tation Service (SRS), the predecessor agency to HCFA, cir- culated to SRS regional commissioners a document (FSIIS: FY-76-44) expressing concern that in a number of cases improper Medicaid payments had been made for individuals in IMDs. The document set out several criteria to assist 293 regional offices in identifying IMDs, including what has been referred to as the "51 percent rule" if more than 50 per- cent of the residents of an institution were patients with mental diseases, the institution was to be identified as an IMD. Two other documents (FY-76-97 and FY-76-156) issued in 1976 noted the continuing confusion regarding the IMD policy and suggested additional criteria designed to help SRS regional offices distinguish among SNFs, ICFs, and IMDs. The three documents were never sent to the States or published in the Federal Register. In December 1982, HCFA issued Section 4390 of the State Medicaid Manual, Part 4: Services, entitled "Services to Individuals Age 65 or Older in Institutions for Mental Diseases." The section includes "Guidelines for Use in Mak- ing the IMD Determination" for the State survey agency and HCFA to use in establishing the overall character of a facil- ity under the Medicaid statute and regulations. The docu- ment clarifies that while the guidelines are useful in identi- fying IMDs, no single guideline is sufficient by itself to classify an institution. A final determination of a facility's status depends on whether the cumulative weighing of all applicable guidelines establishes that its overall character is that of a facility established and maintained primarily for the care and treatment of individuals with mental diseases. The HCFA guidelines are as follows: 1. The facility is licensed as a psychiatric facility for the care and treatment of individuals with mental diseases. 2. The facility advertises or holds itself out as a facility for the care and treatment of individuals with mental diseases. 3. The facility is accredited as a psychiatric facility by the Joint Commission of Accreditation (JCAH). 4. The facility specializes in providing psychiatric care and treatment. This may be ascertained through review of patients' records and may also be indicated by the fact that an unusually large proportion of the staff have specialized psychiatric training. 5. The facility is under the jurisdiction of the State's mental health authority. 6. More than 50 percent of the patients have mental diseases which require inpatient treatment accord- ing to the patients' medical records. 294 7. A large proportion of the patients in the facility have been transferred from a State mental insti- tution for continuing treatment of their mental disorders. 8. Independent professional review teams report a: preponderance of mental illness in the diagnoses of the patients in the facility. 9. The average age in the facility is significantly lower than that of a typical nursing home. 10. Part or all of the facility consists of locked wards. State survey agencies are instructed to plan surveys so they can identify facilities which need to be more thor- oughly investigated for the purposes of IMD identification. The guidelines also contain a procedure for assessing the patient population. HCFA recommends that in applying the fourth and sixth guidelines, the State survey agency use a review team which has at least one physician or other mem- ber who is familiar with care of the mentally ill. In applying the sixth guideline, reviewers must deter- mine whether each patient's need for institutionalization results from a mental disease. For the purpose of this de- termination, HCFA clarified that mental conditions are not to be considered mental diseases for purposes of IMD identification. Conclusion The rationale for Federal policy in this area has been that the care of the mentally ill has been traditionally and still is today a State responsibility. HHS officials see the use of Medicaid-/or Medicare-reimbursed nursing home care for the mentally ill as a means of shifting the cost burden for care of the mentally ill from the State to the Federal Government. It is true that traditionally it has been the States (via the State mental hospitals) that have provided care for the mentally ill. But it was Federal policy which mandated the deinstitutionalization of many of the State hospital pa- tients. Unfortunately, because of the lack of sufficient alternatives between State hospitals and community living, such as nursing homes or residential care facilities for the mentally ill, large numbers of mentally ill are trapped in a costly cycle of inadequate care. They wander the streets of our cities and populate our shelters for the homeless. When 295 their mental problems become acute, they crowd the emer- gency rooms-of general hospitals and now constitute a sig- nificant percentage of general hospital stays. Since many are on Medicaid, they drive up Medicaid costs as well as State general assistance costs because of the high cost of the care they receive. It appears that it is more costly--in both financial and human terms--for the Federal Govern- ment not to provide reimbursement for the care of the mentally ill in nursing homes. If permitted to do so by law and by reimbursement practices, nursing homes could provide a continuum of long- term mental health services to the deinstitutionalized. Nursing homes are far less costly than either mental hospi- tals or the cycle of street life to acute care hospitalization to street life. Twenty-four-hour nursing home care provides a protective environment: shelter, nutrition, and health and social services. Specialized program staff could supplement these services with the necessary psychiatric, skills, behav- ioral, and interpersonal relationship training services neces- sary to enable the mentally ill to enjoy maximum freedom. Possible Research Objectives Research should certainly concentrate on determining the cost of ang the mentally ill in nursing homes and in general hospitals (in- and outpatient facilities, as well as emergency rooms). The research should calculate whether the overall cost to the Federal Government for the deinsti- tutionalized patient for emergency health care, shelter, drugs, etc., is actually more expensive than for the short- stay nursing home patient or halfway house resident. Simi- lar research already underway in regard to alcoholics and the drug-dependent should be expanded and stressed. Re- search should also attempt to relate individual character- istics and profiles with an identification of the appropriate level of care to meet their needs. The research should also attempt to determine what length of stay in a nursing home or other residence is sig- nificant in lessening later hospital costs and other depen- dencies on Federal programs. Research projects on financing care of the mentally ill should analyze the following: l. The cost of providing services to the deinstitu- tionalized including mental health services, medi- cal services, case management, shelter, social services, Supplemental Security Income, and food 296 stamps. This research should also analyze the costs of acute care for these individuals. The cost of episodic acute care for the mentally ill. The cost of inappropriate placement of the men- tally ill. 4. The cost of specialized long-term care of the men- tally ill. 5. The cost of expanding the Medicaid eligibility for persons age 21 to 64 who need institutional care in hospitals and long-term care facilities with special treatment programs. 6. National expenditures for the care of the mentally ill--by funding source, by illness, and by location, type, and size of facility. 7. The cost of developing and implementing a con- tinuum of care for the mentally ill. 8. The cost of providing a continuum of care for the mentally ill who are eligible for Medicare. WN oe References Fox, P.D., and Clauser, S.B. Trends in nursing home expendi- tures: Implications for aging policy. Health Care Finan- cing Review, 2(2):65-70, Fall 1980. Gibson, R.M., and Waldo, D.R. National health expendi- tures, 1980. Health Care Financing Review, 3(1):48, Sept. 1981. U.S. Bureau of the Census. General Population Characteris- tics: U.S. Summary. 1980 Census of Population. No. PC 80-1-B1 May 1983. Washington, DC: U.S. Govt. Print. Off. Valiante, J.D. The capital requirements for long term care services. Health Care Financial Management, 14(4):84-90, April 1984. 297 CHAPTER 22 THE CONFERENCE ON MENTAL HEALTH AND NURSING HOMES: AN AGENDA FOR RESEARCH Mary S. Harper, Ph.D., R.N., F.A.A.N. Coordinator, Long-Term Care Programs Mental Disorders of Aging Research Branch National Institute of Mental Health Rockville, MD The papers in this volume highlight the almost complete vacuum which currently exists in the provision of mental health services to the Nation's nursing home residents. The papers have also underscored a related phenomenon--the rudimentary nature of our knowledge of the subject of men- tal health and illness in nursing homes and the appropriate services that might be necessary to meet the diverse requirements of the population in need. The primitive state of our knowledge concerning many aspects of the problem of mental illness in the nursing home population is not surprising considering that, until recently, the subject has been one that has been all but ignored by policymakers, researchers, and health care providers alike. The National Institute of Mental Health, the Federal agency which is the focal point for funding research on the mental health of the elderly, reports a total of only six studies from 1967 to 1980 on mental illness in nursing homes. Recently, however, positive signs of change have begun to occur. The situation of the mentally ill in nursing homes is becoming the focus of increasing national attention. The growing awareness of the mental health problems of the el- derly population as a whole, coupled with the increased scrutiny which has been directed to the overall quality of care provided in nursing home settings, has served to finally bring to the surface the problem of the elderly mentally ill who reside in these institutions. National Conference on Mental Health in Nursing Homes The growing recognition that the mental health needs of the nursing home population can no longer be ignored 299 culminated in the fall of 1983 in the convening of the first national conference specifically devoted to this topic. The conference titled "Mental Illness in Nursing Homes: An Agenda for Research," sponsored by the Center for Studies of the Mental Health of the Aging (CSMHA) of the National Institute of Mental Health (NIMH), represented months of planning and consultation. It was guided by a steering com- mittee of experts in the fields of mental health, gerontol- ogy, and long-term care services. The conference was unique in being the first of its kind held in an actual nursing home setting. Its major stated objectives were as follows: eo To examine the state of the art in the treatment of mental illness in nursing homes; eo To identify priority research needs and develop specific recommendations for use by the Center for the Studies of the Mental Health of the Aging in formulating research initiatives to address these concerns; and eo To explore the implications of the above for treat- ment, care, manpower development, and public policy formulation at the Federal, State, and local levels of government. The 3-day conference was attended by over 250 partic- ipants representing a broad spectrum of disciplines including health care providers, mental health and behavioral science researchers, nursing home staff at both the professional and paraprofessional level, administrators of nursing homes, nursing home ombudsmen, representatives of nursing home organizations, and other concerned individuals. Five major topics constituted the conference agenda. Issues related to each were addressed in plenary sessions and workshops which followed (see Appendix A. "Conference Agenda"). The major topics addressed were these: eo The extent and nature of mental, emotional, and behavioral disorders in nursing homes; the inci- dence, prevalence, and causation of specific con- ditions; identification of research issues related to improving our knowledge of mental illness; and the assessment of these conditions in nursing home patients; e The examination of the state of the art of current treatment modalities; and identification of re- search issues related to effective interventions and their application to specific cognitive, emotional, and behavioral conditions; eo The identification of research issues related to other variables, i.e., environmental and social, 300 which may affect the mental health status of nurs- ing home residents; and identification of those issues related to the promotion of greater functional autonomy; e The identification of research issues related to manpower requirements to improve the delivery of mental health services to nursing home patients, approaches for improving staff capacity, and alter- nate delivery systems; and eo The identification of changes in public policy re- quired to improve the appropriate delivery of men- tal health services to nursing home residents and issues related to the financing of mental health services. The final morning of the conference was devoted to an overview summarizing the current state of the art of re- search on mental illness in nursing homes. This session, chaired by Fred Hirt, executive director of the Miami Jew- ish Home and Hospital for the Aging, underscored the defi- ciencies in our current knowledge and set the framework for the workshop reports and research recommendations and the summation of conference findings. Conference participants were in universal agreement on one topic--the rudimentary nature of our knowledge con- cerning the multifaceted issues related to mental illness in nursing homes and approaches to providing effective care. They repeatedly underscored the fact that the true extent of the problem of mental illness in nursing homes--including the incidence and prevalence of specific conditions--is not currently known. The conference highlighted the fact that not only have few studies been conducted related to issues of mental ill- ness in nursing homes, but that many of the existing studies have methodological shortcomings which affect their appli- cability--e.g., inadequate or inappropriate baseline data, inaccurate diagnostic data and patient classifications, ques- tionable reliability of assessment procedures and instru- ments, inappropriate or invalid measures of study outcomes, and ill-defined research populations. Overall, the participants saw a need for more longitu- dinal studies in order to trace the course or development of specific mental conditions and to identify causative or preventive factors over an extended period of time. They also strongly supported a greater emphasis on research con- ducted within the actual nursing home environment using an interdisciplinary team approach. 301 The Agenda for Research The conference workshop sessions and plenary discus- sions covered a number of recurrent themes that provide a framework for research priorities to improve mental health services in the Nation's nursing homes. A summary of the major themes and the overall thrust of research priorities identified at this national forum are presented here. A more detailed discussion of specific research recommen- dations, based on the conclusions of conference participants and the papers in this volume, are contained in the conclud- ing chapter of this volume. The major conference findings and recommendations were these: e Research on mental illness in nursing homes must recognize the diverse nature of the population in need, i.e., subgroups reflecting various psychiatric classifications, those with a chronic history of mental illness vs. those with late life onset of a disorder, persons admitted because of an 'irre- versible'" dementia vs. those whose condition may be associated with a potentially treatable physical condition, and those without diagnosable mental illness but who nevertheless have symptoms in- dicative of mental distress. Research issues and methodologies appropriate to each subgroup need to be developed. eo The overall objective of all research on mental health services in nursing homes should be to im- prove the quality of residents' lives and their emo- tional well-being. We currently lack consensus on what constitutes positive emotional health and ad- justment in the nursing home environment. Re- search needs to determine appropriate criteria for measuring the mental health status and functioning of specific subgroups, and interventions need to be evaluated in relation to these indices. eo An informed national agenda for improving the quality of mental health services in nursing homes must be based on accurate current and projected data bases. Adequate information on the incidence and prevalence of specific mental disorders in the nursing home population is currently not available. Accurate estimates on the population "at risk" and those with symptoms of emotional distress are also lacking. We urgently need epidemiological studies 302 of the extent of particular disorders among desig- nated population groups. Large national surveys need to be supplemented by indepth "model" stud- ies, such as the Epidemiological Catchment Area studies currently being conducted under the aus- pices of NIMH. The need for greater accuracy in the diagnosis of mental disorders in nursing home residents is an issue of central importance. Appropriate care- giving decisions, as well as the conduct of valid research investigations on mental illness in nursing homes, depends greatly on diagnostic accuracy. Studies are needed to improve assessment meth- odologies and instruments for evaluating particular disorders based on normative data developed on the nursing home population. We need to place parti- cular emphasis on developing instruments appro- priate for use by professional and paraprofessional nursing personnel, who are the primary caregivers in the nursing home setting. Approaches to the assessment and treatment of mental illness in the nursing home population need to fully recognize the interrelationship between physical, mental, and social functioning in elderly individuals. We need studies to more clearly define this relationship and the interaction between par- ticular mental and physical disorders. Multidimen- sional assessment instruments that reflect this in- terrelationship must be developed and validated on the nursing home population. We need to place greater emphasis on studies directed toward the prevention of mental illness among elderly nursing home residents. We know that a substantial percentage of the mentally ill in nursing homes develop the disorder during the course of their nursing home residency. Some es- timates put upwards of half of the nursing home population "at risk" of developing a mental illness at some point during their residency. Factors in the nursing home environment which contribute to mental illness or emotional distress--as well as those which promote mental health--must be iden- tified. Attributes of individuals which are asso- ciated with positive mental, emotional, and social functioning must also be delineated. Research on issues related to Alzheimer's disease in the nursing home population should be given high priority. The extent to which the condition is mis- diagnosed or undiagnosed in the nursing home popu- lation, and the consequences in both human and financial terms, is a major concern. Important re- search issues include epidemiological studies of the incidence and prevalence of Alzheimer's disease in different groups of nursing home residents, meth- odologies for staging symptoms and progression of the disorder, methodologies to improve assessment accuracy, studies to determine the extent to which improvements in functioning can be expected when concomitant physical conditions are treated, inves- tigations of neuropathological correlations, studies of potential cost savings associated with specific interventions, and therapeutic trials of pharmacol- ogic interventions. Research directed to increasing our knowledge of the effects of specific drugs on the elderly should be another top priority. Normative data on the pharmacokinetics of specific drugs most commonly used by nursing home residents is required to es- tablish appropriate dosage levels, determine drug responses and effects, and identify possible drug- drug and drug-food interactions and reactions. Studies which evaluate the possible causal rela- tionship between specific drugs and the onset of cognitive deterioration in the elderly are parti- cularly important. Appropriate alternatives to the current over- reliance by nursing home staffs on drug therapies must be developed. The effectiveness of various behavioral, social, and environmental interventions applied to specific cognitive, behavioral, and emo- tional disorders needs to be the subject of intensive research. Research is also needed on how--and by whom--these interventions can most efficiently and effectively be provided in light of the known inadequacies in manpower resources and mental health capabilities of nursing homes. Studies focusing on human resource issues af- fecting the delivery of mental health services to nursing home residents should receive major em- phasis. Given the reality of inadequate and un- trained staff and limited financial resources, the 304 key research issues center around identifying ap- proaches for enhancing existing staff capacity to deliver mental health services and finding cost- effective ways to augment current staff re- sources. While not necessarily a long-range solu- tion, we need to explore and evaluate alternative approaches to the delivery of mental health serv- ices to the nursing home population through link- ages and collaborations with outside provider groups and individuals. Families should be viewed as a key resource in efforts to improve the quality of life of nursing home residents. Studies aimed at identifying the roles the family does--or could--play in providing emotional support to nursing home residents are of critical importance. Potential actions to encour- age and reinforce these roles need to be examined, as do ways to avoid or resolve potential barriers, e.g., conflicts with staff concerning care-giving decisions. The fact that substantial numbers of nursing home residents do not have a family sup- port network must be recognized. Studies con- ducted by the National Center for Health Statistics reveal that almost half the institutionalized elderly are childless. Thus studies directed at identifying and evaluating substitute support networks should be undertaken. We need to determine the impact of the nursing home environment on the functional capacity and emotional well-being of residents. We need to identify modifications in both the physical and social environment that are likely to lead to im- proved quality of life for nursing home residents, and systematically evaluate them in relation to the needs and characteristics of particular resident subgroups. We need studies to identify racial, ethnic, and other demographic variables associated with nurs- ing home placement and with the incidence and prevalence of specific mental disorders. The dif- ferential rate of nursing home usage between whites and members of minority groups is well known, but there is little precise knowledge of the factors involved. Even less is known regarding the prevalence of specific mental disorders among various minority populations and the extent to which these are associated with nursing home 305 placement. The identification of demographic variables associated with new admissions to nursing homes is of particular importance. We also need studies to evaluate the impact of racial factors on the effectiveness of assessment and treatment methodologies. eo The enactment of public policy initiatives to improve the delivery of mental health services to the nursing home population must be based on an evaluation of the cost issues involved. Research on the effectiveness of various approaches to the deli- very of mental health services must seek to dem- onstrate that appropriate and effective care can be delivered in an efficient and cost-effective man- ner. Research directed to demonstrating potential cost savings in the appropriate provision of mental health services to the population at need, or "at risk," should receive high priority. e While issues of cost containment and the allocation of scarce resources are of critical importance, ethical considerations in the care and treatment of the elderly mentally ill in nursing homes must not be sacrificed. A fundamental framework for the analysis of relevant ethical concerns needs to be developed. Critical questions related to such is- sues as the right to treatment, the right to accu- rate diagnosis, and the right to participate in the decisionmaking process need to be identified and priorities for research established. Summary The "Conference on Mental Illness in Nursing Homes: An Agenda for Research" was given a broad mandate: to examine the state of the art of current research efforts in the care and treatment of the mentally ill elderly in the Nation's nursing homes, to identify priority research needs, and to develop specific recommendations to assist the Na- tional Institute of Mental Health in formulating research initiatives to address identified concerns. The recommen- dations set forth on the preceding pages have provided an overall framework for a national research agenda that responds to this mandate. They represent the informed thinking and considered deliberations of some 250 parti- cipants from throughout the United States encompassing a 306 broad spectrum of disciplines and sharing a common com- mitment to improving the quality of care and the quality of life of the Nation's 1.3 million nursing home residents. If enacted, the research initiatives that have been identified should go a long way toward improving our knowledge and capacity to provide effective mental health services to the elderly in need and achieving the overall goal of improving the quality of life of nursing home residents. 307 CHAPTER 23 IMPLICATIONS OF CHANGING CONCEPTS OF DEMENTIA FOR NURSING HOMES Marshal F. Folstein, M.D. Eugene Meyer, Professor Psychiatry and Medicine, and Mary Jane Lucas, R.N., C., Instructor Department of Psychiatry and Barry Rovner, M.D., Instructor in Psychiatry Department of Psychiatry Johns Hopkins University School of Medicine Baltimore, MD Concepts of dementia and the methods for studying it are changing. New scales for the detection of dementia by nursing home personnel at the bedside, new criteria for its diagnosis, and new research studies to determine the causes of the diseases are appearing. The major conceptual change has been the recognition of dementia as a psychological syn- drome which is the consequence of a specific disease such as Alzheimer's disease or multi-infarct dementias, rather than an inevitable consequence of aging. These diseases affect a small minority of the elderly population. Although we don't have cures for these diseases, the fundamental concept that dementia is associated with disease brings confidence that these diseases will eventually be prevented and cured in the way that many infectious diseases and deficiency diseases have been cured and prevented as a result of epidemiologi- cal, clinical, and laboratory research. An appreciation of these changes is essential for nurs- ing home personnel. Over 50 percent of nursing home resi- dents in the United States are estimated to suffer from some kind of mental disorder, although the actual distribu- tion of mental illness is yet unknown (Kramer 1983). How- ever, many mental disorders are unrecognized and therefore untreated (Marsden 1978; Lucas and Folstein 1980). Fail- ure to recognize mental illness in nursing home residents inevitably leads to inappropriate interventions or no inter- ventions at all (Sabin et al. 1982). Thus, limited prospects for improvement or a more rapid decline in overall con- ditions in nursing home residents can be expected. The ad- vances of research will inevitably affect the care available for these residents. The implementation of these advances 309 will require continuing reeducation and training of nursing home personnel, and a continual restructuring of service planning as the armamentarium for managing particular symptoms of the disease grows. Cognitive Symptoms of Dementia Syndrome The syndrome of dementia is defined by its psychologi- cal aspects. Dementia is a global deterioration of intellec- tual functioning which occurs in clear consciousness. Since it occurs in clear consciousness, the patients are alert and accessible and not drowsy, lethargic, or dulled. Thus, de- mentia is differentiated from delirium. Since dementia is characterized by a deterioration, the dementia syndrome must be differentiated from mental retardation and mental handicap which are lifelong cognitive impairments. Since, in dementia, the intellectual function is affected globally, many particular cognitive capacities are impaired. Thus, patients suffering from a dementia syndrome not only suffer from defects in memory, but also defects in their capacity to solve problems, understand instructions, grasp the nature of the environment (including the dimensions of time and space), manipulate their bodies to perform such simple tasks as dressing or eating, and recognize familiar faces and situ- ations. Furthermore, the cognitive features, which are the defining features of the dementia syndrome often change, over time, depending on the progression of the underlying disease process. Thus, the psychological cognitive features will differ, from time to time, in a given patient. Noncognitive Symptoms of Dementia Syndrome In addition to the cognitive symptoms, patients suf- fering from a dementia syndrome often suffer from addi- tional psychological symptoms which cause concern and suffering both for the patients and for those around them. Recognizing the variety of psychological features of the dementia syndrome is the basis of effective management of these patients. The associated psychological features which may be seen with a dementia syndrome may encompass all abnormal behaviors. However, several syndromes and particular behaviors present themselves frequently for management. The first is the syndrome of delirium. Patients with dementia syndromes are at a high risk for developing a 310 delirium in relation to trivial metabolic insults. Thus, a small dose of a medication which would be well tolerated by another patient of the same age will produce delirium in a patient with a dementia syndrome. Delirium may be recog- nized by an alteration in the patient's level of conscious- ness, as well as by cognitive impairment and a variety of other symptoms including delusions, hallucinations, mood disturbances, and disturbed behavior. Disturbances of mood are frequently seen in patients with dementia syndrome. Several types of mood disturbance are recognized. The first is a clear depressive syndrome, which includes a sustained change in mood with an altera- tion in the patient's self-attitude in the direction of hope- lessness, worthlessness, and guilt, often accompanied by dis- turbances of sleep and appetite and potentially associated with suicidal behavior. In contrast to a clear depressive syndrome which is pervasive and usually unresponsive to situational remedies, the patient with the dementia syndrome may suffer from emotional lability with short periods of depression lasting minutes to hours, sometimes unexplained, but usually as- sociated with environmental stimuli. The emotional lability may present as depression, but also as irritability, violence, and occasionally inappropriate elation. Emotional lability is contrasted with pseudobulbar palsy, which is a pathological emotion associated with bi- lateral lesions in the cortico-bulbar tracks in the cerebral hemisphere or in the brain stem; the latter is characterized by a stereotyped and uncontrollable expression of emotion, usually crying, which the patient recognizes as being out of his control and often recognizes to be unrelated to his cur- rent level of feeling of emotion. For example, a patient at some particular stimulus will start to cry for a period of seconds to minutes, the face will become contorted and ap- pear to be sad. Yet such patients say they don't feel sad; rather this is a reaction which comes over them without their control and which they don't understand. Finally, another emotional disturbance associated with dementia is the catastrophic reaction described by Goldstein (1952), which is a sustained release of emotional expression, often lasting minutes to hours, in relation to a specific task failure or in relation to the patient's perception that a par- ticular situation is too complex to complete successfully. In addition to these abnormalities of mood, patients with dementia syndrome often suffer from hallucinations, usually visual or auditory. Such patients perceive some event to occur in the absence of an external stimulus and 311 often react appropriately to the hallucination. For example, upon seeing visitors in the waiting room, the patient may ask them to leave or call the police to report unwelcome in- truders. These hallucinations are sometimes associated with secondary delusions. Delusions may be related to a dementia syndrome, but they usually arise out of an understandable reaction to a cognitive deficit. Thus, individuals who are unable to re- member where they place things may develop the idea that a particular family member or some other person is stealing from them. In addition to these abnormal mental phenomena, ab- normal behaviors are often seen in association with the dementia syndrome. Many of these behaviors present dif- ficulties for nursing home personnel (Stotsky 1970). They may include wandering and pacing, abnormalities of eating and sleeping, incontinence, and uncooperativeness, some- times associated with irritability and violence. The behav- ior of walking or wandering away from a residential facility can be associated with a variety of other symptoms. The patient may simply be trying to walk home; or the patient may be responding to hallucinatory voices or trying to ac- complish some task secondary to a delusion, such as going to the bank because they think they have no money. Wandering and walking away must be distinguished from pacing or walking back and forth in a stereotyped manner. Pacing can also be associated with agitation and depression, or with the symptom of akathisia, which is a side effect of neuroleptic medications. Disorders of motivated behavior--relating to eating, sleeping, or sexual activity, for example--are frequently seen in association with the dementia syndrome. Eating too little can be a result of mechanical difficulties in bringing food to the mouth because of an apraxia or a loss of appe- tite secondary to medical illness or secondary to medica- tions or depression. Difficulties in sleeping may be asso- ciated with a variety of brain diseases that are associated with dementia syndrome including Alzheimer's disease, Parkinson's disease, and stroke. Disorders of sleeping can also be related to delusions, hallucinations, and depression. Disorders of sexual behavior in association with a dementia syndrome are poorly described and studied. However, sexual disinterest and inhibition are more frequently seen than sex- ual overactivity, which only rarely occurs in patients with dementia syndrome. Incontinence of urine and stool may occur in association with the dementia syndrome and again can be associated 312 with a variety of other psychiatric symptoms such as being unable to find the bathroom, being frightened of voices that are heard in the bathroom, as well as from neurological structural disease associated with a dementia syndrome and from disorders of the urinary tract such as infections. Probably the most difficult behavioral abnormality seen in association with the dementia syndrome is a patient's ap- parent uncooperativeness or lack of adherence to the flow of life in a structured setting. Again, this behavior can have multiple causes. Among them may be the presence of an aphasia, which makes the patient unable to understand the requests being given, or delusions, hallucinations, mood disturbances, or other disruptive behavior which can also lead to the patient's failing to adhere to institutional life. The incidence and types of presenting psychiatric and be- havioral symptoms seen in one dementia research clinic are shown in table 1. Scales for Evaluating the Dementia Syndrome in Nursing Homes Comprehensive assessment of physical health and func- tioning, mental state, and social activity of residents with dementia syndromes in long-term care is necessary for ac- curate diagnosis, treatment, and formulation of care plans. Rating scales can be used to measure these variables and provide reliable and valid empirical data upon which to base future need for services, predict outcomes, and use for review. The choice of a scale depends on its particular purpose and the level of training required to complete it. The fol- lowing are examples of scales designed to measure different aspects of residents in nursing homes. Activities of Daily Living (ADL) Measurement of the practical functioning and nursing needs of nursing home residents is essential in comprehen- sive assessment and care planning. Usual items include con- tinence, mobility, bathing, dressing, eating, and transfer from bed to wheelchair. The Katz index of ADL provides rapid and reliable as- sessment of these variables by caretakers in institutional settings. It directs attention to functional losses, monitors change over time, and structures nursing care plans (Kane and Kane 1981). 313 Table 1. Secondary psychiatric and behavioral symptoms of patients with Alzheimer's disease and multi-infarct dementia N=108 N = 20 Alzheimer's Multi-infarct Symptom Disease (%) Dementia (%) Behavior problems 48 65 (includes assaultiveness, verbal abuse, irritability, uncooperativeness, catastrophic reaction, wandering) Wandering 33 40 Sleep disturbance 29 60 Delusions 25 25 Irritability 24 35 Hallucinations 20 33 Depression (specifically 16 35 diagnosed) Anxiety 15 15 Uncooperativeness 14 0 Castastrophic reactions 13 5 Weight decline (at least 10 20 5 lbs. in 6 mos.) Assaultive behavior 9 20 Verbal abuse 8 15 Appetite disturbance 8 30 Change in mood (sustained) 5 15 Change in self-attitude 3 10 Obsessions 1 0 Compulsions 1 5 Phobias 1 0 NOTE: These figures are based on symptoms present at time of patients' initial evaluations at the Dementia Research Clinic of the Johns Hopkins University Hospital, 1983-84. 314 Mental Status The Mini-Mental State Examination is a 30-point cog- nitive screening test which assesses orientation, memory, attention, language, and the capacity to perform learned motor movements. This scale has been widely used in gen- eral hospitals and outpatient facilities, has proven reliability and validity, and has recently been used in a large commu- nity survey of the elderly--thus, normative values for the community are available. The average score for individ- uals over the age of 65 is 26, and the 95th percentile score is 17. The scale produces scores for individuals with Alz- heimer's and multi-infarct disease for at least the first 6 years of illness. The Geriatric Mental State Schedule is a 207-item semistructured clinical interview designed to ascertain major psychiatric disorders in the elderly and classify them according to symptom profile. It is comprehensive, yet brief, easy for trained personnel to administer, not stressful to subjects, and of proven reliability and validity (Copeland et al. 1976). It includes nine sections assessing cognition, somatic symptoms, and nervous symptoms, anxiety, depres- sion, mobility, ADL, body recognition, and an "observable behavior" rating. Social Functioning Useful measures of social functioning must include as- sessment of social interactions, personal coping capacity, subjective well-being, and environmental fit (Kane and Kane 1981). The Social Dysfunction Rating Scale is well suited for assessing these factors in elderly institutionalized per- sons with dementia, who often maintain gratifying social contacts despite their cognitive impairment. High inter- rater reliability and ability to discriminate psychiatric and nonpsychiatric cases have been shown (Linn 1969). Behavioral Abnormalities The Multi-dimensional Observation Scale for Elderly Subjects (MOSES) is a scale designed to assess behavioral abnormalities that accompany psychiatric disorders in el- derly nursing home residents. It is brief, uses clearly de- fined descriptions of behaviors, requires no direct patient participation, and involves minimal training for staff use. It has proven reliability and validity, and is useful in the development of care plans, for inservice training, and for evaluation of treatment programs or drugs (Short 1982). 315 Management of Abnormal Mental States and Behavior The management of abnormal mental states and be- havior associated with dementia becomes more clear after the recognition and accurate description of an underlying psychiatric syndrome or of an abnormal behavior that is responsible. The first step is always a thorough medical review--looking particularly for mild infections of the lung or the urinary tract, dehydration, fecal impactions, or intoxication with medications. The value of neuroleptics for the treatment of delu- sions, hallucinations, irritability, and violence in patients with a dementia syndrome has been suggested by several studies, and its use is current clinical practice. However, better clinical trials, in which the particular symptoms of the patients are documented and the diseases underlying the dementia are diagnosed, are sorely needed. Similarly, anti- depressant treatment of depressive syndromes which occur in patients with preexisting dementia syndromes seems to be effective with some patients; however, data from large- scale clinical trials are not yet available. In all cases, the dosages of these drugs must be kept to the lowest possible level. In addition, pharmacological management must be accompanied by interpersonal and behavioral interventions. Such interventions with demented patients seem useful in clinical practice; however, clinical trials of specific kinds of interventions with patients having particular kinds of secondary symptoms are unavailable and need to be done. The reduction of situations known to cause catastrophic reactions is one obvious approach, as is the use of clear instructions given one at a time. Furthermore, patients with dementia syndromes often respond to an empathic ap- proach even though their cognitive capacity is limited. Thus, an important part of the management of patients with dementia syndromes is the identification of individuals on the staff who are able to develop empathic relationships with particular patients despite the patients’ limited capa- city to understand and express feelings. Our clinical ex- perience has shown that one effective way of dealing with patients with dementia syndromes is to relate to them and act toward them as one would toward any other ill person, ignoring their cognitive limitations. Family members can often assist with particular patients by using (and sharing) skills that they have found to be effective in managing the patients over years of interactions with them. 316 Causes of Dementia Syndrome The dementia syndrome necessarily implies an under- lying neurological disorder or a systemic disorder that somehow affects the nervous system. The disorders that cause progressive dementia include the following: Causes of Progressive Dementia e Primary cerebral degenerations e Intracranial mass lesions Alzheimer's disease and Tumor senile dementia Subdural hematomas Multi-infarct dementia Pick's disease e Hydrocephalus Huntington's chorea Obstructive Creutzfeldt-Jacob disease Communicating Multiple sclerosis Spinocerebellar degenerations Systemic diseases Wilson disease Hypothyroidism Parkinsonism and its variants Hypocalcemia Punch-drunk syndrome Hypoglycemia Porphyria eo Dementias requiring specific Vitamin deficiency therapy (vitamin B12, niacin) Cerebral infarctions and Hepatic inflammations encephalopathy Neurosyphilis Malabsorption Arteritis syndrome Systemic lupus Dementia in erythematosus alcoholics They can be classified into brain diseases such as Alz- heimer's disease, Pick's disease, Huntington's disease, and Creutzfeldt-Jacob disease; vascular diseases such as multi- infarct dementia, syphilitic meningitis, and cerebral vas- culitis; and other diseases such as hypothyrodism and per- nicious anemia which affect the brain. The most frequent cause of the dementia syndrome is Alzheimer's disease. Alzheimer's disease is a clinical pathological entity characterized by insidious onset and gradual progression of a dementia syndrome and by early prominent amnesia followed by aphasia, apraxia, and ag- nosia. The disorder progresses from onset to death for a variable length of time, averaging 7 years in most autopsy 317 series, but with a variation that can extend from 3 to 20 years. Pathologically the patients suffer from 'degenera- tion of specific nerve cells, presence of neuritic plaques, and neurofibrillary tangles. Alterations in transmitter- specific markers include forebrain cholinergic systems and, in some cases, noradrenergic and somatostatinergic systems that innervate the telencephalon" (McKhann et al. 1984). The cause of Alzheimer's disease is unknown, although relatives of patients with Alzheimer's disease are at three to four times the risk for developing it than the general population, and in many families the disease is transmitted as an autosomal dominant disorder (Folstein and Powell 1984; Powell and Folstein 1983). Theories of the cause of Alzheimer's disease include a viral agent or intoxication with aluminum (Pruisner 1984; Crapper et al. 1973; Perl 1980). Patients with Alzheimer's disease suffer from all of the psychological symptoms associated with the dementia syn- drome in general, but the regular and predictable appear- ance of aphasia, apraxia, and agnosia indicate that indi- viduals will have difficulty understanding language and expressing themselves, difficulty performing learned motor movements such as dressing and eating, and eventually will be unable to recognize situations or individuals around them. The implications of these symptoms are great for management and dictate an increasingly skilled level of care to manage the patient's behavior. Alzheimer's disease runs in many families and affects the families of patients with a prolonged period of stress and grief. The families of these patients must be treated and managed as well as the patients themselves. Thus, any nursing home caring for these patients must be equipped to also deal with the emotional problems of their families. Research Recommendations We recommend the following research pursuits: L. Determine the distribution of mental disorders in nursing homes. 2. Determine the distribution of disruptive symp- toms in nursing homes. 3. Determine the need for psychiatric consultation and care in nursing homes. 4. Conduct clinical trials of psychotropic drugs in nursing homes. 318 5. Conduct clinical trials of behavioral management techniques in nursing homes. 6. Conduct clinical trials of patient mix, e.g., cog- nitively impaired and cognitively normal, in nurs- ing homes. 7. Conduct clinical trials of how physical setting (e.g. windows, courtyards) affects disruptive be- havior in nursing homes. a. Determine psychiatric manpower needs in nursing homes, including psychiatrists, psychiatric nurses, and social workers. % Conduct research to discover the cause of Alz- heimer's disease. 10. Conduct research to discover the cause of multi- infarct dementia. References Copeland, J.R.M. et al. A semi-structured clinical inter- view for assessment of diagnosis and mental state in the elderly: The Geriatric Mental State Schedule. Psycholog- ical Medicine 6:439-449, 1976. Crapper, D.R. et al. Brain aluminum distribution in Alzheimer's disease and experimental neurofibrillary degeneration. Science 180:511, 1973. Folstein, M.F., and Powell, D. Is AD inherited? A methodol- ogical review. Integrative Psychiatry 2(5):161-200, 1984. Goldstein, K. The effect of brain damage on the personality. Psychiatry 15:245, 1952. Kane, R.A., and Kane, R.I. Assessing The Elderly. Lexington, Mass.: Lexington Books, 1981. Kramer, M. The continuing challenge: The rising preva- lence of mental disorders, associated chronic diseases and disabling conditions. American Journal of Social Psy- chiatry 3(4):13-24, 1983. Linn, M.W. et al. A social dysfunction rating scale. Journal of Psychiatric Research 6:299-306, 1969. Lucas, M.J., and Folstein, M.F. Nursing assessment of men- tal disorders on a general medical unit. Journal of Psy- chiatric Nursing 18(5):31-33, 1980. Marsden, C.D. The diagnosis of dementia. In: Isaacs, A.D. and Post, F. eds. Studies in Geriatric Medicine. Chiches- ter, England: John Wiley and Sons, 1978, pp. 99-110. McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D., and Stadlan, E.M. Clinical diagnosis of Alzheimer's disease. Neurology 34:939-944, 1984. 319 Perl, D.P., and Brody, A.R. Alzheimer's disease: X-ray spectrometric evidence of aluminum accumulation in neurofibrillary tangle-bearing neurons. Science 208:297, 1980. Powell, D. and Folstein, M.F. Pedigree study of familial Alzheimer's disease. Journal of Neurogenetics 189-197, 1984. Pruisiner, S.B. Some speculations about prions, amyloid and Alzheimer's disease. New England Journal of Medi- cine 310(10):661-663, 1984. Sabin, T.A. et al. Are nursing home diagnosis and treatment inadequate. Journal of American Medical Association 248(3):321, 1982. Short, J.C. The rationale, construction, and development of the MOSES: A multidimensional observation scale for elderly subjects. In: Proceedings of the Ninth Annual Meeting of the Ontario Psychogeriatric Association, 1932. pp. 264-290. Stotsky, B.A. The Nursing Home and The Aged Psychiatric Patient. New York: Appleton-Century-Crofts, 1970. 320 CHAPTER 24 FUTURE DIRECTIONS FOR RESEARCH Mary S. Harper, Ph.D., R.N., F.A.A.N. Coordinator, Long-Term Care Programs Center for Studies of the Mental Health of the Aging National Institute of Mental Health Rockville, MD Enhancing the quality of life of the Nation's nursing home population is closely tied to a number of key variables which center largely on (1) providing an environment which attends not only to physical needs, but is responsive to intel- lectual and social functioning as well; and (2) ensuring that needed care services are of the highest quality possible. The past decade has witnessed a growing recognition, by those concerned with nursing home reform, that the system has largely failed to achieve these goals. As a result, a number of public policy initiatives have ensued and legisla- tive actions have been enacted to help bring about some important reforms in the Nation's nursing home industry. Until recently, however, one aspect of nursing home care, which is in many ways the most central of all to im- proving the quality of life of the resident population, had escaped the limelight. An appalling lack of attention has been directed to the mental health care needs of nursing home residents. This shortcoming is particularly striking when one considers that national surveys estimate that nearly 60 percent of nursing home residents suffer from some form of mental illness. A number of factors which currently prevent the development of appropriate mental health services and programs directed to the nursing home population have been identified. While some of these are difficult to overcome without legislative actions and re- forms--e.g., inadequate and inequitable funding of mental health services--others result from our lack of knowledge of how to best serve the population in need. The papers in this volume aim at achieving a better understanding of the na- ture and scope of the mental problems that beset the resi- dents of the Nation's nursing homes and identifying ways to better serve those needs. Key recurring issues underlying most of the discussion concern how to best provide these needed care services and establish an environment conducive to supporting positive 321 mental health--given the reality of finite funding, inade- quate staffing, and the growing population in need. Ac- cording to estimates of the Health Care Financing Admin- istration, the nursing home population will reach some 2 million by the year 2000, a 54 percent increase from today's figures. Since 1975, nursing home expenditures have represented the fastest growing segment of national per- sonal health care expenditures. In 1981, some $24.2 billion was spent on U.S. nursing home care, with public funds ac- counting for 56 percent of the total. The sheer magnitude of the number of individuals af- fected make clear that the mental health care needs of the Nation's nursing home residents can no longer be ignored. Thus we need to consider how to achieve the desired goal most effectively from both a human service and cost perspective. A number of major research initiatives will need to be undertaken to enhance our knowledge of how best to serve the mental health needs of nursing home residents. The papers in this volume and the findings of the conference "Mental Illness in Nursing Homes: An Agenda for Research" have focused on the major areas of concern. We will now attempt to summarize the major conclusions arrived at and the priorities set forth for the research agenda in the years to come. Research Related to the Incidence, Prevalence, and Etiology of Specific Mental, Emotional, and Behavioral Problems Providing appropriate mental health services to the el- derly in nursing homes requires a clearer understanding of the size and characteristics of the population in need. Our available data base concerning clinically diagnosable mental disorders—-their incidence, prevalence, and causation--is im- precise at best; our knowledge of that segment of the pop- ulation who, while not clinically diagnosable as mentally ill, nevertheless exhibit common forms of emotional distress-- i.e., depression, confusion, or anxiety--is virtually nonexistent. Our current knowledge of the extent and nature of mental illness and emotional problems in the nursing home population is based on national survey data provided by the National Center for Health Statistics. As highlighted in the paper by Kramer, these national data have major short- comings. Foremost among the inadequacies is the fact that 322 the data base consists of prevalence rates of broad diagnos- tic categories of mental disorders with no differentiation of important subclassifications. The data further distorts the prevalence of specific conditions because it fails to provide distinct information on newly admitted patients--informa- tion which would be of invaluable assistance in tracing the course of specific mental disorders among nursing home residents and the factors contributing to their development and treatment. The need for more appropriate and accurate data on the extent and nature of mental illness in the nursing home pop- ulation has been a recurring theme throughout this volume. Such data are essential to enable researchers, planners, pol- icymakers, and administrators to provide a basic framework for improving the mental health care of the nursing home population. In light of the above, we suggest the following research priorities: e The obtaining of uniform and reliable diagnostic data--through national surveys and indepth model studies--of the incidence and prevalence of specified mental disorders in the nursing home pop- ulation; the classification of these data by demo- graphic and socioeconomic characteristics. e Studies of the incidence, prevalence, and etiology of emotional and cognitive disorders affecting large numbers of nursing home residents which, while not clinically diagnosable as mental illness, represent symptoms of serious emotional distress. e Studies of the incidence and prevalence of these emotional and cognitive conditions specifically conducted with cohorts of newly admitted residents. Research Related to Improved Diagnostic Capacities Failure to accurately diagnose the mental health status of nursing home residents can have tragic consequences re- sulting in inappropriate admissions, improper care level decisions, and interventions which may hasten or contribute to a further decline in both mental and physical function- ing. Unfortunately, considerable evidence indicates that misdiagnoses of the mental condition of elderly nursing home patients occur frequently. 323 Achieving diagnostic accuracy is central also to our capacity to conduct sound research studies, the results of which can subsequently be applied to improving the care of identified populations. In order to improve the precision of our data on the extent of mental illness among nursing home residents, including the prevalence of diagnostic subgroups, we clearly need to improve the precision, reliability, and validity of existing assessment technologies. The develop- ment of assessment technologies directed toward obtaining a more accurate picture of the mental health status of el- derly nursing home patients, as well as the interrelated physical, cognitive, social, and self-care capacities that affect overall functioning and emotional well-being, is a central concern. The high prevalence of inaccurate assessments of the mental health status of elderly nursing home patients can be traced to a number of factors: the lack of attention and priority that is given to the overall problem of mental health in the nursing home population, diagnostic instru- ments which may not be suitable to assessing the needs and characteristics of the elderly, staff inability to conduct accurate mental assessments of a geriatric population, and reimbursement systems which discourage the diagnosis of mental conditions in nursing home residents. At present, there is no single general-purpose psychogeriatric evaluation instrument for use by nursing staff--those who are primarily responsible for conducting patient assessment in the nursing home setting. In light of the above, we suggest the following research direction: eo The development of reliable instruments for as- sessing overall cognitive, behavioral, and function- al status of nursing home residents that are based on normative data derived from that population. e The development of reliable and valid instruments specific to assessing particular mental disorders found with high frequency in the nursing home population (e.g., depression) based on normative data of that population. eo The development of appropriate psychogeriatric assessment instruments specifically for use by nursing personnel. 324 Research Related to Alzheimer's Disease The exact prevalence of Alzheimer's disease among nursing home residents is unknown, although we know it to be a problem of considerable proportions. Failure to diag- nose the condition and to distinguish it from other forms of senility is common in nursing homes. A number of factors would appear responsible: a nihilistic view concerning the prognosis for improvement, difficulties in achieving diagnos- tic accuracy and agreement in diagnostic terminology, and the frequent difficulties in obtaining financial reimburse- ment for medical services related to the condition. The need to achieve a greater understanding of the scope of Alzheimer's disease in nursing home patients and methods to better treat or manage the behavioral manifest- ations associated with it are compelling. While the disease itself is not yet curable, considerable clinical evidence dem- onstrates that various behavioral manifestations associated with the disorder are responsive to appropriate interven- tion. Research is needed to better identify those symptoms and behaviors which are most responsive to interventions and those interventions which are most effective. A related issue of concern, underscoring the need for achieving more accurate differential diagnoses of Alz- heimer's disease and other forms of senile dementia, is the prevention of false diagnoses of incurable conditions in pa- tients who may exhibit similar symptoms stemming in fact from a treatable disease. Careful screening of such cases and prompt and appropriate treatment can frequently elimi- nate the need for extended nursing home care. Some re- search questions and topics for the future include: 1. What is the impact of stress on the lives of other members of the family--beyond the primary care- giver of the Alzheimer's patient? 2. Social support research generally lacks a theoreti- cally useful definition of social support. 3. What factors influence caregivers' behavior and decision to assume, maintain, or abandon the care- giver role? 4. Are there racial or ethnic differences in the toler- ance and coping with acting out/disruptive behav- ior of the Alzheimer's patient and how are these related to the caregivers' performance and stress? 5. How compatible are the current data bases refer- ring to patients needing long-term care for dis- orders causing dementia? 325 6. Can we develop standardized diagnostic assess- ments for Alzheimer's disease that are suitable for use in field studies by technically/vocationally pre- pared staffs in long-term care institutions? Depression is the most common behavioral, emotional, and mental disorder among the nursing home residents. Re- search on depression in the community-dwelling elderly, however, establishes that it is a substantial problem and leads to the conclusion that its incidence among nursing home residents is also of a major magnitude. Empirical evidence points to the fact that depression in nursing home residents is frequently ignored; its symptoms are often considered a normal part of the aging process--and it is all too often mistaken for senility. The failure to accu- rately assess and treat depression only leads to further de- terioration and distress--a consequence which is all the more tragic considering it is a condition which in many cases is both preventable and highly responsive to treat- ment. Identified risk factors for depressive illness in later life are low education, low income, poor health, and being female and/or divorced, separated, or widowed. In order to improve our ability to effectively treat depression in nursing home residents, we need to launch a major research effort aimed at improving our technologies for assessing the disorder in this population group, deter- mining etiological and preventive actions, evaluating the effectiveness of various interventions, and improving the skills of caregivers in providing therapeutic services. In light of the above, we suggest the following research directions: e The development of accurate demographic data on the incidence and prevalence of depression in the nursing home population. eo The determination of etiological factors leading to the development of depression in nursing home residents. What changes in the nursing home en- vironment can lead to the prevention or amelio- ration of the condition? Why do soine people become depressed in a nursing home environment while others do not? eo The development of assessment instruments appro- priate to evaluating depression in the nursing home population, with particular attention devoted to measures which can be effectively used when cog- nitive impairment is present. 326 eo The systematic evaluation of the relative efficacy of various therapeutic interventions, with par- ticular emphasis on developing and evaluating innovative behavioral approaches. Research Related to Appropriate Pharmacological Interventions The overreliance on pharmacological intervention in the treatment of mental disorders and the management of be- havioral problems in nursing home residents emerges as a priority area of concern. Surveys of skilled nursing homes in the United States have shown enormous drug use--and mis- use--in the treatment of the multiple physical and emo- tional problems of nursing home patients. These studies reveal that the average nursing home patient receives more than 6 different prescribed drugs, while 15 percent of the residents receive 10 or more prescriptions. More than half receive tranquilizers or sedatives as part of their overall drug regimen. The potential for, and actual incidence of, adverse drug reactions under these circumstances is believed to be of major proportions. The danger of adverse reactions occur- ring in this population group is intensified by the fact that the elderly frequently respond differently to a particular drug than do younger persons on which the drug has been tested. We lack sufficient knowledge, however, as to the precise nature of these effects; we also lack information concerning the effectiveness, compatibility, dose response, and toxicity of most combinations of drugs used with elderly patients. Mounting evidence suggests that the misuse of drugs in the elderly population frequently exacerbates underlying disease conditions and accompanying symptoms. Side ef- fects of some drugs commonly prescribed to nursing home residents have been shown to include cognitive deterioration and other forms of mental confusion. Drugs form an important component of the care arsenal available for the treatment of mental and related disorders in elderly nursing home residents. The issue at hand is en- suring that these drugs are used appropriately and in as in- formed a manner as possible. To ensure this, we need to know much more about the properties and effects of parti- cular drug regimens--both positive and negative--when used in the care of the elderly. 327 In light of the above, we suggest the following research directions: e Clinical pharmacokinetical studies with repre- sentative treatment groups in the nursing home population--both cross-sectional and longitudinal-— to define dosage requirements and disposition characteristics for specified psychopharmacologic treatments. eo Studies of the relationship between specific drugs and the development of emotional, physical, and cognitive symptomatology, i.e., confusion, falls, disturbances of gait, and cognitive dysfunction in nursing home patients. e The development of appropriate assessment instru- ments to measure the effects of drugs in the treat- ment of particular mental conditions. Research Related to Behavioral Interventions The heavy reliance on chemical interventions in the treatment of mental illness and associated symptomatology in nursing home residents has a corollary--the failure to provide other, potentially more effective, treatment tech- niques where appropriate. Throughout this volume, a re- current theme has been the need to develop alternatives to psychopharmacologic intervention. Several of the papers noted that despite the proven efficacy of certain behavioral therapies in other population groups--which would seem to hold considerable promise for certain groups of nursing home patients--there have been few efforts to move in this direction. The failure to consider alternative approaches to the treatment of the mental health problems of nursing home patients is attributed directly to the fact that nursing homes are based on the medical model of care. Conditions for which behavioral therapies would seem to hold the most promise fall into two general classifications: e Socially significant behaviors--i.e., incontinence, self-feeding, other activities of daily living, socialization. e Clinically significant behaviors--i.e., depression, confusion, anxiety, paranoia, and psychologically based physical symptoms. Despite the dearth of research on behavioral inter- vention with elderly populations in nursing homes, the 328 success of behavioral techniques with younger people pro- vides us with substantial knowledge to help direct our efforts. We now need to determine the special issues, procedures, and modifications required to use such in- terventions effectively with nursing home residents. A key issue revolves around the question of how to best deliver these services considering existing manpower shortages and the lack of staff specially trained in behavioral techniques. We suggest the following directions for future research: eo Studies to develop behavioral interventions specifi- cally targeted to the needs, symptomatology, and special conditions of nursing home residents. eo Evaluation of the relative effectiveness of specific behavioral interventions (i.e., reality therapy, be- havior modification, cognitive behavior therapy) on particular cognitive, affective, and behavioral disorders. eo Priority studies directed to the evaluation of be- havioral techniques in ameliorating those condi- tions which affect large numbers of the elderly-- i.e., depression, anxiety, and mental confusion. Research Related to the Nursing Home Environment The nursing home environment, in both its physical and social aspects, has a major impact on the quality of life afforded the nursing home resident. There is widespread agreement that the nursing home environment should en- courage maximum autonomy and decrease functional de- pendency. Considerable evidence supports the conclusion reached by Minkler that perceived sense of responsibility and control appears to be a major determinant of health and well-being among the institutionalized. The average nursing home in the United States today is far from this ideal. Several authors in this volume concur that the problem stems from prevailing management philos- ophies that place primary emphasis on patient management and control rather than resident life enhancement. Although it is generally accepted that the physical en- vironment can affect the overall well-being of the nursing home resident to the extent that it promotes functional autonomy, only sporadic efforts have been made to bring this about. As noted by Faletti, relatively little systematic attention has been given to the design of spaces, objects, and devices for institutional environments which might en- hance the self-care abilities of residents. Which aspects of 329 the physical environment are likely to promote optimal mental health? Which encourage functional dependency and mental distress? How can environmental changes best be achieved? We do not currently have informed answers to these questions. The social environment as well--including the nature of patient-staff relationships, staff attitudes toward elderly patients with mental disorders, opportunities for sociali- zation, the nature of relationships with other patients, opportunities for intellectual and creative involvements-- can have a major impact on the well-being of nursing home residents. An area of concern cited repeatedly by con- ference participants is the need to find ways to bring about more positive interchanges between nursing home staff and patients and to combat the negative staff attitudes that hinder the optimal care of elderly nursing home residents. In light of the above, we suggest the following directions for future research: eo Studies to determine those physical and social as- pects of the nursing home environment which help to promote and maximize independent functioning, self-care, self-management, and self-help in nursing home residents. e Studies to determine the relationship between iso- lated aspects of the nursing home environment and the development or exacerbation of mental prob- lems such as depression and confusion. e The development and evaluation of staff education, training, and incentive programs aimed at changing negative attitudes toward elderly patients and cre- ating more positive relations and actions toward them. Research Related to Personnel Issues The quality of mental health services provided to nurs- ing home residents relates directly to the capability of personnel to provide such care. Reforms directed to im- proving mental health care of elderly nursing home patients must first and foremost confront the fact that few homes today have any staff capable of providing such services. Friedenberg (National Plan for the Chronically Mentally Ii 1981) notes, "Although some positive growth has occurred in recent years in the general professionalization of nursing 330 home personnel, the nursing home industry still is charac- terized by inadequate numbers of trained staff, both pro- fessional and paraprofessional, by high turnover rates par- ticularly in the unlicensed nursing personnel categories, and by salary levels under those for comparable positions in the acute care or home health care system." The fact that few nursing homes have staff specifically trained to meet the special needs of the mentally ill is hardly unexpected. Clearly, however, enhancing the quality of mental health care provided to nursing home residents will require an answer to the fundamental personnel dilem- ma posed--given the reality of existing staff shortages, personnel untrained to deliver mental health services, a growing nursing population in need, and limited funds avail- able, how can the capacity of nursing homes to deliver ap- propriate mental health services be enhanced? The most urgent research priorities revolve around two issues: (1) strategies to improve the capacity of current nursing home caregivers to provide mental health services and (2) strategies to identify alternative approaches to the de- livery of mental health services to nursing home residents. We suggest the following research directions: e The development and evaluation of continuing edu- cation models and other innovative educational ap- proaches for the training of nursing home staff in the delivery of mental health services to elderly nursing home residents. e Model projects to develop various organizational linkages between nursing homes and outside groups--i.e., State mental hospitals, community health centers, universities, and private providers-- and to evaluate the effectiveness of these collab- orative efforts in improving the delivery of mental health services to the nursing home population. eo The development and evaluation of various service models provided through collaborative efforts, i.e., direct treatment, staff consultation, staff training, etc. eo Studies of the roles volunteers, families, and other nontraditional caregivers can play in addressing the needs of the mentally ill in nursing homes. 33] Research Related to the Family The family's central role in caring for aging relatives has been well documented. Families provide up to 80 per- cent of the personal care services required by aging rela- tives in the community. While the nature of both care and social relationships undergoes fundamental changes when institutionalization occurs, all available empirical evidence suggests that the family's role continues to be critically important to the overall well-being of the nursing home patient. Despite widespread recognition of the continuing im- portance of the family's support role, few researchers have investigated ways to reinforce the role of families of nurs- ing home residents. As noted in Brody's paper, "Not only is information incomplete about what families actually do in such situations, but there is much ambiguity about what they should do." Descriptive studies of families' roles in institutional care reveals at least two major ways families enhance the quality of life experienced by their institutionalized rela- tives: families act as principal providers of emotional sup- port and socialization and as mediators with the "formal" system of nursing home care. Many questions pertaining to the nature and performance of these roles, however, remain unanswered. Answers to the following questions and others are critical to our efforts to reinforce the family's continu- ing involvement and important contribution to the resident's overall well-being: Are there potential conflicts between staff and family perceptions of the "legitimate" family role in decisions regarding patient care? What is the basis of these conflicts and how can they best be avoided or re- solved? What is the "legitimate" family role and how should it be enacted? What actions can be taken to reinforce family support? What do the residents themselves expect and desire in the way of family involvement? Are there differences among ethnic groups in the roles families play? The importance attached to the role of the family in affecting the well-being of the nursing home resident has a corollary--the need to focus redoubled attention to that segment of the nursing home population without family ties. As revealed in Brody's paper, 10 percent of elderly residents of nursing homes have no next of kin; the vast majority of residents are widowed, and only half have any living children. Future generations of nursing home resi- dents are likely to include increasing numbers of individuals without viable family support networks. Investigations 332 directed to identifying alternative support networks for these individuals should thus be given the highest priority. We suggest the following research directions: eo The identification and clarification of specific roles performed by families in the nursing home setting; the identification of ways to reinforce and enhance these roles. eo Investigations of the perceptions of families re- garding their roles and the role of staff in caring for elderly nursing home residents. Investigations of staff perceptions of the family's role, the illu- mination of potential conflict situations between staff and family, and methods to avoid or resolve them. eo Identification of methods for integrating families into institutional programs in a partnership rela- tionship with staff; evaluation of the effectiveness and impact of these efforts on residents, staff, and family members. eo Investigations to identify alternative support net- works for residents without families, determination of the roles "interested others" can effectively play, and evaluation of the effectiveness of these efforts. Additional Research Priorities Research on the prevention of mental illness in the "at-risk" population. Substantial numbers of older persons first develop mental illness or experience significant mental distress following nursing home admission or during the course of their residency. It has been estimated that over half the residents are "at risk" of developing a significant mental disturbance or disorder while in the nursing home. Little is known, however, concerning environmental or in- dividual characteristics associated with the onset of parti- cular disorders and the extent to which specific conditions are preventable. What environmental changes can lead to enhanced well-being? Why do certain individuals develop emotional disorders while others maintain their emotional health? The promotion of mental health and the prevention of disease has yet to be systematically studied in the nursing home environment, although it is an issue of central impor- tance. The benefits from both a human and cost-saving perspective could be substantial. 333 Research on the interrelationship between physical and emotional functioning in nursing home residents. The interrelationship between mental and physical factors in the etiology and progression of various disorders has been well established. In the elderly population in particular, the valid assessment of mental capacity cannot be divorced from an evaluation of the presence of concomitant physical prob- lems. While this fact is widely accepted, much remains unknown concerning the specifics of the relationship be- tween physical and mental functioning and the impact on particular disease processes. Research on this issue that is applicable to nursing home residents is greatly needed. Ac- curate evaluation of the mental health status of elderly nursing home residents and the provision of appropriate treatment and preventive measures require a targeted re- search program directed to this important topic. Research on the impact of reimbursement and financing issues on the provisions of mental health services in nursing homes. Federal and State financial policies can dramatically affect the provision and delivery of mental health services in nursing homes. The restrictive effects of Medicare and Medicaid provisions governing payment for the assessment and treatment of mental illness in nursing homes has been well documented. Research is needed to system- atically evaluate the impact of newly enacted and proposed health care financing provisions in both the acute and long- term care systems on nursing home utilization, mental health care requirements, and the delivery of mental health services. Model projects to evaluate cost-effectiveness is- sues related to the delivery of comprehensive mental health services in nursing home settings are urgently needed. Summary The recommendations set forth on the preceding pages provide a framework for a comprehensive national research agenda directed to improving the quality of life of the Na- tion's nursing home residents. The issue of mental illness in nursing homes has far too long been placed on the back burner of national priorities. As the discussions presented in the papers in this volume vividly underscore, however, it is an issue which can no longer be ignored. The continued rapid growth of the aging population (and particularly the older segments), the high prevalence of mental illness which characterizes this population, and the continuing substantial growth in the number of elderly requiring nursing home care 334 all point to an increase in the number of persons residing in nursing homes who will require effective mental health services. The publication of this volume and the convening of a major national conference devoted to the issue of mental health research needs in the Nation's nursing homes have provided a vital national focus on this important area of concern. These discussions provide an invaluable focus for subsequent policy deliberations and initiatives aimed at addressing the multiple issues involved in providing quality mental health services to nursing home residents. Enact- ment of the research recommendations presented would provide the requisite knowledge to help ensure that the mental health needs of the nursing home population will be met in the most effective and cost-efficient manner that our national resources can provide. References Friedenberg, E., "Care of the Mentally Ill in Nursing Homes," In: Toward a National Plan for the Chronically Mentally Ill . . . Addendum to the National Plan. U.S. Department of Health and Human Services, (DHHS Publication No. (ADM)81-1077). 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Gerontologist 20(6):649-655, 1980. 355 APPENDIX A Center for Studies of the Mental Health of the Aging National Institute of Mental Health Division of Prevention and Special Mental Health Programs Alcohol, Drug Abuse and Mental Health Administration U.S. Department of Health and Human Services Rockville, Maryland NATIONAL CONFERENCE ON MENTAL ILLNESS IN NURSING HOMES: AN AGENDA FOR RESEARCH October 5-7, 1983 Hebrew Home of Greater Washington 7:30-8:30 A.M. 8:30-9:00 A.M. Rockville, Maryland AGENDA Wednesday, October 5, 1983 REGISTRATION WELCOME AND INTRODUCTIONS Mary S. Harper, Ph.D., R.N., F.A.A.N. Coordinator, Long-Term Care Programs Center for Studies of the Mental Health of the Aging National Institute of Mental Health Barry D. Lebowitz, Ph.D. Chief Center for Studies of the Mental Health of the Aging National Institute of Mental Health Mr. Samuel Roberts, M.P.A. Director Hebrew Home of Greater Washington Gene D. Cohen, M.D., Ph.D. Director, Program on Aging Division of Prevention and Special Mental Health Programs National Institute of Mental Health 9:00-10:30 A.M. Wednesday, October 5, 1983 Larry Silver, M.D. Deputy Director National Institute of Mental Health U.S. Department of Health and Human Services Plenary Session MAJOR BEHAVIORAL, EMOTIONAL AND MENTAL DISORDERS IN NURSING HOMES: IMPLICATIONS FOR RESEARCH "Senile Dementia and Alzheimer's Disease" Burton V. Reifler, M.D. Associate Professor Director, Alzheimer's Disease Research Program Director, Geriatrics and Family Services Department of Psychiatry University of Washington Seattle, Washington "Major Mental Disorders in Nursing Homes" Benjamin Liptzin, M.D. Director of Geriatric Psychiatry McLean Hospital Associate Professor of Psychiatry School of Medicine Harvard University "Interface of Emotional and Be- havioral Conditions with Physical Disorders in Nursing Homes" Gene D. Cohen, M.D., Ph.D. Director, Program on Aging Division of Prevention and Special Mental Health Programs National Institute of Mental Health Wednesday, October 5, 1983 e "Major Mental Health Problems in Nursing Homes as Perceived by a Medical Director of a Nursing Home" Charles N. Still, M.D. Deputy Commissioner - Long-Term Care Division South Carolina Department of Mental Health Director, C.M. Tucker, Jr. Human Resource Center Columbia, South Carolina 10:30-12:30 P.M. WORKSHOPS Workshop A: Senile Dementia and Alzheimer's Disease Implications for Research Leader Burton V. Reifler, M.D. Recorder Joanne Rader, R.N., B.S., Staff Nurse, Clinical Specialist, Benedictine Nursing Center Oregon Health Sciences University School of Nursing Portland, Oregon Resource Charles N. Still, M.D. Persons James Murphy, A.C.S.W. Director, Older Adult Programs Wabash Valley Mental Health Center Lafayette, Indiana Mabel H. Jackson, R.N., M.A., C.N.A. Supervisor, Nursing Home Unit Veterans' Administration Medical Center Tuskegee, Alabama Wednesday, October 5, 1983 Workshop B: Ruth Gordon Bradshaw, Ph.D., R.N. Executive Director Central Alabama Compre- hensive Health, Inc. Tuskegee Institute, Alabama Herbert Nickens, M.D., M.A. Head, Clinical Training Program Center for Studies of the Mental Health of the Aging National Institute of Mental Health Major Mental Disorders in Nursing Homes: Leader Recorder Resource Persons Implications for Research Benjamin Liptzin, M.D. Barbara Lowry, Ph.D., R.N. Director, Psychiatric Nursing School of Nursing University of Pennsylvania Liaison, Robert W. Johnson Foundation Teaching Nursing Home Program Philadelphia, Pennsylvania Noel List, M.D. Health Scientist Administrator National Institute of Aging Associate Professor, Dept. of Psychiatry School of Medicine University of Maryland Wednesday, October 5, 1983 Workshop C: Elmer Ediger Executive Director Prairie View Inc. Newton, Kansas Virginia Hammond, LPN Administrator Cedar Crest Nursing Home - Intermediate Care Facility for Mental Health Haviland, Kansas Delight Wreed, R.N., B.S. Nebraska Health Care Association Consultant and Author, Mental Health Training of Aides in Nursing Homes Lincoln, Nebraska Interface of Emotional/Behavioral Condi- tions and Physical Illness in Nursing Homes: Implications for Research Leader Recorder Resource Persons Gene D. Cohen, M.D., Ph. D. Barbara L. Fishman, R.N., M.N. Supervisor of Mental Health Programs Visiting Nurse Association Greater Kansas City Kansas City, Missouri Mathy Mezey, Ph.D., R.N., F.A.A.N. Project Director Robert W. Johnson Foundation Teaching Nursing Home Program Professor, School of Nursing University of Pennsylvania Philadelphia, Pennsylvania Wednesday, October 5, 1983 Michael Silver, M.D. Clinical Director, Community Support Services Providence Center for Counseling and Psychiatric Services Providence, Rhode Island Kenneth Solomon, M.D. Adjunct Assistant Professor Department of Psychiatry University of Maryland Associate Director, Education and Planning Levindale-Hebrew Geriatric Center and Hospital Baltimore, Maryland Donald N. Re Ville, M.D. President Emeritus, California Association of Medical Directors Medical Director and Consultant Skilled Nursing Home Facilities Carmichael, California Workshop D: Epidemiological and Historical Perspec- tives--Mental Illness in Nursing Homes: Implications for Research Leaders Morton Kramer, Ph.D. Professor of Epidemiology Department of Mental Hygiene School of Hygiene and Public Health Johns Hopkins University Baltimore, Maryland Wednesday, October 5, 1983 Pearl German, Ph.D. Health Services Research and Development Center Johns Hopkins University Baltimore, Maryland Recorder Joan Van Nostrand Deputy Director, Division of Health Care Statistics National Center for Health Statistics Hyattsville, Maryland Resource Barbara Burns, Ph.D. Persons Acting Chief, Clinical Services Research Branch Division of Biometry and Epidemiology National Institute of Mental Health Evelyn Mathes Chief, Nursing Home Branch National Center for Health Statistics Hyattsville, Maryland Workshop E: The Role of the Family in Nursing Homes and Long-Term Care: Implications for Research Leader Elaine Brody, M.S.W. Director and Senior Researcher Department of Human Sources Philadelphia Geriatric Center Philadelphia, Pennsylvania Wednesday, October 5, 1983 Recorder Georgia Georgeson, M.S.N., R.N. Director, Long Term Care Nursing Services Veterans' Administration Central Office Washington, D.C. Resource Wilbur Watson, Ph.D. Persons Chairman, Department of Sociology Director, W.E. DuBois Center /Institute of Aging Atlanta University Atlanta, Georgia David Larson, M.D., M.P.H. Division of Biometry and Epidemiology National Institute of Mental Health Bernice Harper, M.S. W. Office of Professional Services Health Care Financing Administration Washington, D.C. Eleanor Dibble, D.S.W. Program Officer Center for State Human Resource Development National Institute of Mental Health Jane Norris, R.N., M.S. Nurse Consultant South Central Community Mental Health Center Bloomington, Indiana 12:30-1:30 P.M. 1:30-3:00 P.M. Wednesday, October 5, 1983 LUNCH Plenary Session CARE AND TREATMENT OF EMO- TIONAL/BEHAVIORAL AND MENTAL DISORDERS IN NURSING HOMES: IMPLICATIONS FOR RESEARCH "Interdisciplinary Treatment Ap- proach: Implications for Research" T. Franklin Williams, M.D. Director National Institute of Aging "Behavioral Therapies in Nursing Homes: Implications for Research" Carol J. Dye, Ph.D. Department of Psychology and Geriatric Research Veterans' Administration Medical Center St. Louis, Missouri "Assessment Methodologies in Nurs- ing Homes: Implications for Research" Richard R. Bootzin, Ph.D. Chairman, Department of Psychology Northwestern University Evanston, Illinois "Treatment Perspectives, Poly Phar- macy and Pharmacokinetics in Nursing Homes" Darwin Zaske, Pharm.D. Professor of Clinical Pharmacy University of Minnesota Director of Pharmaceutical Services St. Paul-Ramsey Medical Center St. Paul, Minnesota Wednesday, October 5, 1983 3:00-5:00 P.M. Workshop F: Workshop G: e "Environmental Impact and the Nursing Home" Martin V. Faletti, Ph.D. Director of Research Miami Jewish Home and Hospital for the Aged Miami, Florida WORKSHOPS Treatment Assessment Methodology in Nursing Homes: Implications for Research Leader Recorder Resource Persons Richard R. Bootzin, Ph.D. Elizabeth Smith, Ph.D., R.N. Chief, Center for State Human Resource Development National Institute of Mental Health Charles N. Still, M.D. Peter Cross, M.S.W. Research Scientist Center for Geriatrics and and Gerontology Columbia University New York, New York Rosalie A. Kane, D.S.W. Social Scientist, Rand Corporation Santa Monica, California Co-author, "Assessing the Elderly" Treatment Perspective and Poly Phar- macy in Nursing Homes: Implications for Research Leader Darwin Zaske, Pharm.D. Wednesday, October 5, 1983 Recorder Mrs. Juanita Horton, Ph.D. Director of Patient Education Food and Drug Administration Resource Steve Moore, Ph.D. Persons Clinical Reviewer for Adverse Drug Reactions Food and Drug Administration Mr. Terry Trudeau, R.Ph., M.B.A. Acting Chairman Department of Pharmacy Practice School of Medicine Howard University Washington, D.C. Editor, Journal on Topics in Hospital Pharmacy Management Michael Silver, M.D. Clinical Director, Community Support Services Providence Center for Counseling and Psychiatric Services Providence, Rhode Island Donald N. Re Ville, M.D. President Emeritus, California Association of Medical Directors Medical Director and Consultant Skilled Nursing Home Facilities Carmichael, California Wednesday, October 5, 1983 Workshop H: Research Directions in Behavioral Thera- pies: Implications for Research Leader Recorder Resource Persons Carol Dye, Ph.D. Linda Kaeser, R.N., A.S.C.W., Ph.D. Associate Professor Community Health Care Systems Director, Teaching Nursing Home Program Oregon Health Science University Portland, Oregon Michael A. Smyer, Ph.D. Associate Professor of Human Development Division of Individual and Family Studies Pennsylvania State University University Park, Pennsylvania Gene D. Cohen, M.D., Ph.D. Director, Program on Aging Division of Prevention and Special Mental Health Programs National Institute of Mental Health Barbara Lowry, Ph.D., R.N. Director, Psychiatric Nursing School of Nursing University of Pennsylvania Liaison, Robert W. Johnson Foundation Teaching Nursing Home Program Philadelphia, Pennsylvania A-12 Wednesday, October 5, 1983 Workshop I: Workshop J: Environmental Impact and the Nursing Home: Implications for Research Leader Martin V. Faletti, Ph.D. Director of Research Miami Jewish Home and Hospital for the Aged Miami, Florida Recorder Mary Ganikos, Ph.D. Executive Secretary National Institute of Alcohol Abuse and Alcoholism Resource Shulamith Weisman, M.Ed. Person Director, Human Services Hebrew Home of Greater Washington Interdisciplinary Treatment Approach in Nursing Homes: Implications for Research Leader George Warner, M.D., M.P.H. Special Health Care Advisor in Chronic Disease, Aging and Preventive Medicine New York State Department of Health Albany, New York Recorder Mrs. Joan Schulman Executive Secretary Life Course Review Committee National Institute of Mental Health Resource Eleanor Dibble, D.S.W. Persons Program Officer Center for State Human Resource Development National Institute of Mental Health Wednesday, October 5, 1983 Barbara Malon, R.N., M.Ed. Consultant, Hospital and Long Term Care Nursing Services National League for Nursing New York, New York Theodore Murchison Nursing Assistant Veterans' Administration Medical Center Nursing Home Care Unit Tuskegee, Alabama Bernice Harper, M.S.W. Office of Professional Services Health Care Financing Administration Washington, D.C. Ms. Bobbie St. Jean Aide of the Year Miami Jewish Home and Hospital for the Aged Miami, Florida Joanne Rader, R.N., B.S., Staff Nurse Clinical Specialist, Benedictine Nursing Center Oregon Health Sciences University School of Nursing Portland, Oregon Rev. C. Wayman Alston Executive Director American Association of Clinical Pastoral Education Milledgeville, Georgia Wednesday, October 5, 1983 Workshop K: Collaboration of Community-Based Men- tal Health Programs, Community Mental Health Centers, State Hospitals, Home Health Care Agencies and Nursing Homes: Implications for Research Leader Jonathan York, Ph.D. Executive Director North East Guidance Center Detroit, Michigan Recorder Bruce Cyr, B.S. Associate Director, Research Projects American College of Health Care Administrators Bethesda, Maryland Resource Laurie Poole, R.N., M.S. Persons Director of Program Development Association of Community Mental Health Centers Rockville, Maryland Mrs. Alice Pinkerton, M.S.W. Director, Allied Protective Services and Home Health Care San Diego, California David Stokes, M.D., Ph.D. President-Elect American Association of Medical Directors for Long-Term Care Facilities Inman, South Carolina Wednesday, October 5, 1983 Evelyn McElroy, Ph.D., R.N. Professor, Psychiatric Nursing School of Nursing University of Maryland James Murphy, A.C.S.W. Director, Older Adult Programs Wabash Valley Mental Health Center Lafayette, Indiana Barbara L. Fishman, R.N., M.N. Supervisor of Mental Health Programs Visiting Nurse Association of Greater Kansas City Kansas City, Missouri Stacey Crane Program Administrator National Association of State Mental Health Program Directors Washington, D.C. Gail McGrath, M.S. Director, Governmental Relations Home Health Services and Staffing Association Washington, D.C. Thursday, October 6, 1983 8:30-10:30 A.M. Plenary Session MANPOWER IN NURSING HOMES: IM- PLICATIONS FOR RESEARCH Thursday, October 6, 1983 10:30 A.M.- 12:30 P.M. Workshop L: Presiding: Jo Elliott, R.N., Ph.D. Director, Division of Nursing Health Resources and Services Administration Formerly: President, American Nurses Association and Director, Western Interstate Commission on Nursing Education eo "State-of-the-Art, Recruitment/Re- tention and Utilization Practices and Policies, Issues in Training, Criteria for Determining Staffing Mix" Carol Lindeman, Ph.D., R.N., F.A.A.N. Professor and Dean, School of Nursing Oregon Health Sciences University Portland, Oregon eo "Research Directions in Manpower in Nursing Homes" Joyce J. Fitzpatrick, Ph.D., R.N. Professor and Dean, School of Nursing Case Western Reserve University Cleveland, Ohio eo "Nursing Homes as a Site for Re- search and Training" Fred Hirt Executive Director Miami Jewish Home and Hospital for the Aged Miami, Florida WORKSHOPS Manpower in Nursing Homes: Implica- tions for Research and Training Leader Carol Lindeman, Ph.D., R.N., F.A.A.N. Thursday, October 6, 1983 Recorder Resource Persons Elizabeth Smith, Ph.D., R.N. Chief, Center for State Human Resource Development National Institute of Mental Health Jeanette Chamberlain Chief, Psychiatric Nursing and Training National Institute on Aging Barbara Malon, R.N., M.Ed. Consultant, Hospital and Long Term Care Nursing Services National League for Nursing Delight Wreed, R.N., B.S. Nebraska Health Care Association Consultant and Author, Mental Health Training of Aides in Nursing Homes Lincoln, Nebraska Eleanor Friedenberg, R.N., M.S. Deputy Director Division of Prevention and Special Mental Health Programs National Institute of Mental Health Michael Silver, M.D. Clinical Director of Community Support Services Providence Center for Counseling and Psychiatric Services Providence, Rhode Island Thursday, October 6, 1983 Samuel Roberts, M.P.A. Director Hebrew Home of Greater Washington Rockville, Maryland Rev. C. Wayman Alston, Ph.D. Executive Director American Association of Clinical Pastoral Education Milledgeville, Georgia Ms. Bobbie St. Jean Aide of the Year Miami Jewish Home and Hospital for the Aged Miami, Florida Theodore Murchison Nursing Assistant Veterans' Administration Medical Center Nursing Home Care Unit Tuskegee, Alabama Suzanne Czechanski,LPN Hebrew Home of Greater Washington Rockville, Maryland Virginia Hammond, LPN Administrator Cedar Crest Nursing Home - Intermediate Care Facility for Mental Health Haviland, Kansas Workshop M: Ethical Considerations and Morale in Nursing Homes: Implications for Research Thursday, October 6, 1983 Leader Recorder Resource Persons Theresa Stanley, Ph.D., R.N. Professor and Dean School of Nursing Incarnate Word College San Antonio, Texas Ruth Gordon Bradshaw, Ph.D., R.N. Executive Director Central Alabama Compre- hensive Health, Inc. Tuskegee Institute, Alabama Evelyn McElroy, Ph.D., R.N. Professor, Psychiatric Nursing University of Maryland President, Maryland Chapter National Alliance for the Chronic Mentally 111 Ms. Pamela Parker Founder, Nursing Home Resident's Advisory Council Minneapolis, Minnesota Ayeliffe Lenihan, Ph.D., R.N. Gerontologist, Division of Nursing Health Resources and Services Administration Department of Health and Human Services Rockville, Maryland Ms. Barbara Frank National Coalition of Nursing Home Reform Washington, D.C. A-20 Thursday, October 6, 1983 Neil Shulman, M.D. Associate Professor, Internal Medicine Department of Medicine Emory Medical School Atlanta, Georgia Director, Pine Knoll Nursing Home Carrollton, Georgia Workshop N: Nursing Home as a Site for Research and Training: Implications for Research Leader Recorder Resource Persons Fred Hirt, M.P.A. Wilbur Watson, Ph.D. Chairman, Department of Sociology Director, W.E. DuBois Center Atlanta University Atlanta, Georgia David Stokes, M.D., Ph.D. Julia Trocchio, R.N., M.S. Director, Office of Facility Standards and Operation American Health Care Association Washington, D.C. Michael Smyer, Ph.D. Associate Professor of Human Development Division of Individual and Family Studies Pennsylvania State University University Park, Pennsylvania Thursday, October 6, 1983 Joan Van Nostrand Deputy Director, Division of Health Care Statistics National Center for Health Statistics Hyattsville, Maryland Barry D. Lebowitz, Ph.D. Chief Center for Studies of the Mental Health of the Aging National Institute of Mental Health Julius Pelligrino, M.S. Chief, Long Term Care National Center for Health Services Research Rockville, Maryland Beryce McLennon, Ph.D. Mental Health Advisor General Accounting Office National Institutes of Health Bethesda, Maryland Noel List, M.D. Health Scientist National Institute of Aging Bethesda, Maryland Veronica Scott, M.D. Assistant Director Center for Aging University of Alabama- Birmingham Chief, Geriatric Services Veterans' Administration Medical Center Birmingham, Alabama A-22 Thursday, October 6, 1983 Richard R. Bootzin, Ph.D. Chairman, Department of Psychology Northwestern University Evanston, Illinois May Wykle, R.N., Ph.D. Associate Professor of Nursing Case Western Reserve University Cleveland, Ohio Darwin Zaske, Pharm.D. Professor of Clinical Pharmacy University of Minnesota Director of Pharmaceutical Services St. Paul-Ramsey Medical Center St. Paul, Minnesota Morton Kramer, Ph.D. Professor of Epidemiology Department of Mental Hygiene School of Hygiene and Public Health Johns Hopkins University Baltimore, Maryland Workshop O: Financing and Cost Reimbursement of Nursing Homes Care: Implications for Research Leaders Daniel Sherwood Chief, Long Term Care Reimbursement Branch Health Care Financing Administration A-23 Thursday, October 6, 1983 Recorders Resource Persons William J. Long Program Analyst Bureau of Reimbursement, Eligibility and Coverage Office of Reimbursement Policy Health Care Financing Administration Doris Mosley, R.N., Ed.D. Program Analyst Division of Planning, Assistance and Assessment State Planning Agency Branch Department of Health and Human Services Joan Buchanon Staff Director, Aging Office American Psychological Association Washington, D.C. Stephen Press, J.D. Vice President, Federal/ State Relations American Health Care Association Washington, D.C. Michael Silver, M.D. Clinical Director of Community Support Services Providence Center for Counseling and Psychiatric Services Providence, Rhode Island A-24 Thursday, October 6, 1093 Janet Shikles Institute for Program Evaluation Government Accounting Office Washington, D.C. Bernard Liebowitz, M.S.W. Executive Director Philadelphia Geriatric Center Philadelphia, Pennsylvania Chester Bradeem, M.S. President West Virginia Health Care Association Columbus, Ohio Workshop P: Health Promotion, Health Education and Self Help in Nursing Homes: Implications for Research Leader Meredith Minkler, Ph.D. Associate Professor, Health Education University of California at Berkeley Recorder Anita Eichler, M.S. Social Science Analyst Self-Help and Mutual Support Division of Prevention and Special Mental Health Programs National Institute of Mental Health A-25 Thursday, October 6, 1983 Resource Philip Weiler, M.D. Persons Director, Teaching Nursing Homes Professor of Community Health School of Medicine University of California at Davis Paul Cornely, M.D. Chairman Emeritus Department of Community Medicine Howard University Washington, D.C. Bernice Harper, M.S.W. Office of Professional Services Health Care Financing Administration Washington, D.C. Alice Meyers, R.N., M.S.N. Division of Nursing Health Resources and Services Administration Rockville, Maryland Barbara L. Fishman, R.N., M.S.N. Supervisor of Mental Health Programs Visiting Nurse Association of Greater Kansas City Kansas City, Missouri Pearl German, Ph.D. Health Services Research and Development Center Johns Hopkins University Baltimore, Maryland A-26 Thursday, October 6, 1983 Shirley Wolock, B.A. Information Specialist Center for Studies of the Mental Health of the Aging Division of Prevention and Special Mental Health Programs Vic Rosenthal, M.S. Executive Director Coalition of Institutionalized Aged and Disabled Lehman College Bronx, New York Workshop Q: Epidemiological and Genetic Aspects of Alzheimer's Research Leader Recorder Resource Persons Disease: Implications for Marshal F. Folstein, M.D. Associate Professor of Psychiatry and Medicine School of Medicine Johns Hopkins University Judith E. Mabry, R.N., M.S. Chief, V.A. Nursing Home Programs Veterans' Administration Central Office Washington, D.C. Valery A. Portnoi, M.D. Associate Professor Health Care Sciences and Medicine Director Geriatric Medicine Division School of Medicine and Health Services George Washington University Washington, D.C. A-27 Thursday, October 6, 1983 Charles N. Still, M.D. Deputy Commissioner-- Long Term Care Division South Carolina Department of Mental Health Director, C.M. Tucker, Jr. Human Resource Center Columbia, South Carolina Barbara Burns, Ph.D. Acting Chief, Clinical Services Research Branch Division of Biometry and Epidemiology National Institute of Mental Health Elaine Brody, M.S.W. Director and Senior Researcher Department of Human Sources Philadelphia Geriatric Center Philadelphia, Pennsylvania Lucy Marten, Ph.D., R.N. Professor School of Nursing Georgetown University Washington, D.C. Rev. C. Wayman Alston Executive Director American Association of Clinical Pastoral Education Milledgeville, Georgia A-28 Thursday, October 6, 1983 Kenneth Solomon, M.D. Adjunct Assistant Professor Department of Psychiatry University of Maryland Associate Director, Education and Planning Levindale-Hebrew Geriatric Center and Hospital Baltimore, Maryland 12:30-1:30 P.M. LUNCH 1:30-3:30 P.M. INFORMAL GROUPINGS Fifteen to twenty conferees will group around issues in nursing home research. A leader and recorder will be appointed and elected to compile a written report for presentation to the entire group. 3:30-4:30 P.M. TOUR OF THE HEBREW HOME OF GREATER WASHINGTON Friday, October 7, 1983 8:30-10:30 A.M. RESEARCH IN NURSING HOMES - STATE OF THE ART: IMPLICATIONS FOR RESEARCH Fred Hirt, Presiding Executive Director Miami Jewish Home and Hospital for the Aged e "Clinical Research Issues in Nursing Homes" Veronica Scott, M.D. Chief, Geriatrics Veterans' Administration Medical Center Assistant Professor of Medicine Assistant Director, Center for Aging Director, Geriatric Medicine Residency Program University of Alabama at Birmingham A-29 Friday, October 7, 1983 eo "Behavioral and Social Science Re- search Issues in Nursing Homes: Im- plications for Research" Rosalie A. Kane, D.S.W. Social Scientist, Rand Corporation Chairman, Aging and Long Term Care Committee National Association of Social Workers Co-author, "Assessing the Elderly" eo "Nursing Research in Nursing Homes" May Wykle, Ph.D., R.N. Associate Professor of Nursing Case Western Reserve University Cleveland, Ohio Recipient, NIMH Geriatric Mental Health Award 10:30-12:00 Noon REPORT FROM WORKSHOPS 12:00-1:30 P.M. 1:30-2:30 P.M. 2:30-3:30 P.M. Mary S. Harper, Ph.D., R.N., Presiding Coordinator, Long Term Care Programs Center for Studies of the Mental Health of the Aging National Institute of Mental Health LUNCH REPORT FROM WORKSHOPS "PULLING IT ALL TOGETHER" Bernard Liebowitz, M.S.W., Presiding Executive Director Philadelphia Geriatric Center Eleanor Friedenberg, R.N., M.S. David Stokes, M.D. Julia Trochio, R.N., M.S. Jonathan York, Ph.D. Barry D. Lebowitz, Ph.D. A-30 APPENDIX B Members of the Steering Committee Marshal F. Folstein, M.D. Associate Professor of Psychiatry and Medicine School of Medicine Johns Hopkins University Baltimore, MD Mary S. Harper, Ph.D., R.N., F.A.A.N. Presiding/Convener Coordinator, Long-Term Care Programs Center for Studies of the Mental Health of the Aging National Institute of Mental Health Rockville, MD Fred Hirt Executive Director Miami Jewish Home and Hospital for the Aged Miami, FL Bernard Liebowitz, M.S. W. Executive Vice-President Philadelphia Geriatric Center Philadelphia, PA Observer-Participants for Donna Barnako, M.S. Director of Government Relations National Council of Health Centers Washington, DC David Stokes, M.D. President-Elect American Association of Medical Doctors for Long-Term Care Facilities Inman, SC May Wykle, Ph.D., R.N. Associate Professor Psychiatric Mental Health Nursing School of Nursing Case Western Reserve University Cleveland, OH Jonathan York, Ph.D. Executive Director North East Guidance Center Detroit, MI the Steering Committee Robert Burmeister, Ph.D. Director of Education American College of Health Care Administrators Bethesda, MD B-1 Jeanette Chamberlain, Ed.D. Chief of Section for Psychiatric Nursing Rockville, MD Mark Covall, M.S. Director of Government Relations National Council of Community Mental Health Centers Washington, DC Eleanor Dibble, D.S.W. National Institute of Mental Health Rockville, MD Helen Foerst, R.N., M.S. Deputy Chief Nurse United States Public Health Service Rockville, MD Dr. James Fozard, Ph.D. Long-Term Care Facilities Veterans' Administration Central Office Washington, DC Barbara Frank, M.A. National Coalition of Nursing Home Reform Washington, DC Eleanor Friedenberg, M.S., R.N. Deputy Director Division of Prevention and Special Mental Health Programs National Institute of Mental Health Rockville, MD Bernice Harper, M.S.W. Office of Professional Services Health Care Financing Administration Washington, DC Ayeliffe Lenihan, Ph.D., R.N. Gerontologist Specialist Division of Nursing, Health Resource, Health Services, Administration Rockville, MD Noel List, M.D. Health Scientist Administrator National Institute on Aging Bethesda, MD Judy Mabry, R.N., M.S. Long-Term Care Facilities Veterans' Administration Central Office Washington, DC Pamela McDonnell Government Affairs American Association of Homes for the Aging Washington, DC Roberta Bolstad Miller, Ph.D. Executive Director Consortium of Social Science Associations Washington, DC Kathleen O'Donaghue, M.A. Continuum of Care Program Analyst American Health Care Association Washington, DC Laurie Paul Director of Program Development National Council of Com- munity Mental Health Centers Washington, DC Sam Silverstein, Ph.D. National Institute of Mental Health Rockville, MD Betty Smith, Ph.D. National Institute of Mental Health Rockville, MD Joan Van Nostrand Deputy Director Division of Health Care Statistics National Center for Health Statistics Hyattsville, MD Shulamith Weisman, M.S.W. Director of Human Services Hebrew Home of Greater Washington Rockville, MD * GPO : 1986 0 - 163-313 : B-3 QL 3 "793 GENERAL LIBRARY - U.C. BERKELEY TNA BO0ODA21332