Special Care Units for People with Alzheimer's and Other Dementias: Consumer Education, Research, Regulatory, and Reimbursement Issues
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Special Care Units for People With Alzheimer's and Other Dementias: Consumer Education, Research, Regulatory, and Reimbursement Issues August 1992 OTA-H-543 NTIS order #PB92-228444 Recommended Citation: U.S. Congress, Office of Technology Assessment, Special Care Units for People With Alzheimer’s and Other Dementias: Conwmer Education, Research, Regulatory, and Reimbursement Issues, OTA-H-543 (Washington, DC: U.S. Governrnent Printing Office, August 1992). Foreword Several million Americans have Alzheimer’s disease or another disease or condition that causes dementia. As our population ages, the number of people with these devastating diseases and conditions will increase relentlessly. Families take care of individuals with dementia at home for as long as possible, but most individuals with dementia are likely to spend sometime in a nursing home in the often long course of their illness. Until recently, little attention has been paid to the special needs of nursing home residents with dementia. In many nursing homes, they have received and continue to receive inappropriate care that exacerbates their cognitive impairments and behavioral symptoms and further reduces their quality of life. There has been a pervasive feeling that nothing positive can be done for nursing home residents with dementia. More often than nondemented residents, they have been overmedicated and physically restrained. As awareness of Alzheimer’s and other dementing diseases has increased, innovative approaches to caring for people with dementia have been developed. Some experts have recommended that nursing homes establish special units for their residents with dementia. OTA estimates that by 1991, 10 percent of all U.S. nursing homes had established at least one such unit. Special care units promise to provide better care for individuals with dementia than these individuals would receive in nonspecialized nursing home units. On the other hand, existing special care units vary greatly, and many people believe that some special care units are established only for marketing purposes and actually provide nothing special for their residents. This OTA report analyzes the available information about special care units for people with dementia. It discusses ways in which the Federal Government could encourage and support what is positive about special care units and at the same time protect vulnerable patients and their families from special care units that actually provide nothing special for their residents. This is OTA’s third report on Alzheimer’s-related public policy issues. Two previous OTA reports, Losing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease and Other Dementias and Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s and Other Dementias, have focused on biomedical and health services research and other components of the care needed by individuals with dementia. OTA hopes that these reports help to define and clarify the problems raised by Alzheimer’s and other dementias and identify ways in which the Federal Government can assist in solving them. OTA was aided in the preparation of this report by members and staff of the Alzheimer’s Association, staff of the National Institute on Aging, special care unit researchers, State officials, and others. OTA wishes to thank all these individuals. OTA particularly wishes to thank Nancy Mace for her valuable contributions to this and OTA’s two previous reports on Alzheimer’s and other dementias. As with all OTA reports, the content of this report is the sole responsibility of the agency and does not necessarily reflect the views of these individuals or the members of the Technology Assessment Board. AA7# -. /j/ JOHN H. GIBBONS Director Ill. Special Care Units for People With Alzheimer’s and Other Dementias: Consumer Education, Research, Regulatory, and Reimbursement Issues OTA Project Staff Roger C. Herdman, Assistant Director, Health and Life Sciences Division Clyde J. Behney, Health Program Manager Project Staff Katie Maslow, Senior Analyst Kerry Kemp, Division Editor Support Staff Marian Grochowski, Office Administrator Eileen Murphy, P.C. Specialist Kim Holmlund, Word Processing Specialist Kelly Faulks, Secretary Contractors Joan Hyde, University of Massachusetts at Boston Nancy Mace, Pacific Presbyterian Medical Center Contents Page Chapter 1: Overview and Policy Implications . 3 Chapter 2: Nursing Home Residents With Dementia: Characteristics and Problems . 57 Chapter 3: Special Care Units for People With Dementia: Findings From Descriptive Studies . 83 Chapter 4: Special Care Units for People With Dementia: Findings From Evaluative Studies . 111 Chapter 5: Regulations and Guidelines for Special Care Units . 133 Chapter 6: Regulations and Interpretations of Regulations That Interfere With the Design and Operation of Special Care Units . 159 Appendix A: Diseases and Conditions That Cause Dementia . 173 Appendix B: Conceptual and Methodological Issues in Research on Special Care Units . 174 Appendix C: Acknowledgments . 176 References . 178 Chapter 1 Overview and Policy Implications Contents Page INTRODUCTION . 3 Congressional Requests . .. 4 Policy Context . 4 Organization of the Report . 9 NURSING HOMES AND DEMENTIA . 9 The Clinical Syndrome of Dementia . 9 The Prevalence of Dementia . * . 9 Nursing Home Use by Individuals With Dementia . 10 Characteristics of Nursing Home Residents With Dementia . 10 Problems in the Care Provided for Nursing Home Residents With Dementia . 12 Negative Consequences for Nursing Home Residents With Dementia, Their Families, Nursing Home Staff Members, and Nondemented Nursing Home Residents . 14 SPECIAL CARE UNITS . .15 Six Theoretical Concepts of Specialized Dementia Care and Their Implications for Staff Composition and Training and the Individualization of Care . 16 Ideas About Special Care Units From Other Countries . 23 Findings From Research on Special Care Units . 24 THE REGULATORY ENVIRONMENT FOR SPECIAL CARE UNITS . 32 The Nursing Home Reform Provisions of OBRA-87 . 33 Existing State Regulations for Special Care Units . 34 POLICY IMPLICATIONS . .35 Implications for Consumer Education About Special Care Units . 35 Implications for Research on Special Care Units . 37 Implications for Government Regulation of Special Care Units . 39 Implications for Reimbursement for Special Care Units . 42 LEGAL AND ETHICAL ISSUES IN SPECIAL CARE UNITS . ..43 Issues With Respect to Locked Units . 44 Issues With Respect to Admission and Discharge . 44 Issues With Respect to Consent for Research Participation . 45 OTHER ISSUES OF IMPORTANCE TO NURSING HOME RESIDENTS WITH DEMENTIA . 47 The Availability of Physicians’ Services . .47 The Availability of Mental Health Services . 48 The Use of Psychotropic Medications . .49 ALTERNATES TO SPECIAL CARE UNITS . .49 Initiatives To Reduce The Use of Physical Restraints for All Nursing Home Residents. 50 Dementia Training Programs for Nursing Home Staff Members . 50 Specialized Programs for Residents With Dementia in Nonspecialized Nursing Home Units . 51 Specialized Living Arrangements Outside Nursing Homes . 51 CONCLUSION . 52 Boxes BOX Page l-A. A Special Care Unit in Lynden, Washington . 5 l-B. The Development of Excess Disability in a Nursing Home Resident With Dementia. 14 l-C. The Use of Behavioral Interventions With a Nursing Home Resident With Dementia. 18 Chapter 1 Overview and Policy Implications INTRODUCTION prised researchers and others because they were much higher than any previous estimates. Two At least half of all nursing home residents in the studies conducted since then indicate that the true United States have dementia. As awareness of number and proportion of nursing homes with a Alzheimer’s disease and other diseases that cause special care unit are probably somewhat lower dementia has increased in recent years, so have (194,247). On the basis of these studies, OTA complaints and concerns about the quality and estimates that 10 percent of all U.S. nursing homes appropriateness of the care provided for individuals had at least one special care unit in 1991.1 Regard- with dementia by most nursing homes. In response less of the precise figures, however, it is clear that the to these complaints and concerns, some nursing number and proportion of nursing homes with a homes have established a special care unit-that is, special care unit are growing rapidly. a physically separate unit in the nursing home that provides, or claims to provide, care that meets the The proliferation of special care units creates both special needs of individuals with dementia. Such problems and opportunities for individuals with units are referred to generically as special care units, dementia, their families, and many other people and dedicated care units, Alzheimer’s units, or dementia organizations that have an interest in the quality and units. OTA uses the term special care units in this appropriateness of nursing home care for individuals report. with dementia. These other interested parties in- clude: nursing home administrators and staff mem- The number of special care units for individuals bers who provide care for individuals with dementia with dementia has increased rapidly over the past both in and out of special care units; physicians, few years. No comprehensive data are available on nurses, social workers, hospital discharge planners, the number of special care units before 1987, but community agencies, Alzheimer’s Association chap- information from several studies indicates that the ters,