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 ADRD Care 
      Introduction
       Difference
       Current Care
       Services
       Measuring
       Recommend

Alzheimer's Disease and Related Dementias:
Acute and Long-Term Care Services.

Introduction
The United States is undergoing a major shift in its approach to delivering health and social service programs. People with Alzheimer's disease and related disorders (ADRD) are likely to be affected by these developments. In addition to a re-evaluation of the role of government, at all levels, in delivering (or being responsible for the delivery of) services, at least two other shifts in strategy are occurring to reform the targets of economics, access, and quality. 

Managed care has been seized as the solution to a series of yet poorly defined problems. Chief among these is the rapidly escalating cost of care. The general belief exists that by combining all costs into a single capitated payment, sufficient management pressure can be brought to bear to contain the growth. Those opposed to managed care raise concerns about the restricted choices imposed and the potential for selective enrollment of participants. At a minimum, there is a strong need to adopt some method of payment that accurately reflects the actual risks of those enrolled. People with ADRD are especially vulnerable because popular belief holds that they are expensive to care for. The enthusiasm for managed care seems to extend to both acute and chronic care. States are turning to such programs as a way to control the rapidly rising costs of their Medicaid programs. If the Federal Government turns over full responsibility for Medicaid to the States, the pressure will increase still further.

In the sphere of long-term care (LTC), there is growing interest in shifting the balance of effort away from the present institutionally-dominated model to include more home and community-based care (HCBC). Such a transition would include the emergence of new hybrid forms of institutional and community care, such as assisted living, which permit better (less institutional) living situations and individually packaged services that respond to client needs. Although no specific programs have been proposed exclusively for people with ADRD, their special needs must be addressed in any potential solutions.

In addition to these newer trends, several issues persist. Demographic changes are leading to a growing number of older women who live alone, who fall near or below the poverty line, and who have little or no access to informal support or care. These women will place increasing demands on formal, publicly funded services. In addition, LTC continues to rely heavily on informal care. The care from spouses, relatives, and friends and neighbors still represents the bulk of services provided. There is no indication that the 80-85 percent of care usually attributed to this source has diminished, but sociological forecasts regularly warn that changes in this country's social and economic situation threaten the stability of this arrangement. As the large majority of women (the traditional source of informal care) enter the workforce, as marital arrangements become more diverse and less stable, and as the birthrate falls (producing fewer children to provide both economic support and direct care), the prospects of continuing to rely heavily on informal care darken. People with ADRD have historically been cared for by just such sources, to the point where caregiver burden and equity issues have become a regular source of concern.  

As the pressures for more service grow and the enthusiasm for providing it declines, the nagging questions about effectiveness of care will intensify. There is a great need to establish just what kinds of care make a difference. As reflected in an earlier report from this Panel, much thought and effort must be directed to the basic question of what is meant by "a difference" (Advisory Panel on Alzheimer's Disease, 1992). The effect of care can be assessed along various individual dimensions, including such factors as cognition, functional status, affect, quality of life, burden of care, and satisfaction. At a minimum, it is important to distinguish compensatory services (designed to assist with those activities the person with ADRD can no longer do for him/herself) from those aimed at restoring function. 

Historical problems of access to care are likely to be exacerbated
Under the present system of a federally administered Medicare program to provide acute care health insurance benefits for virtually all people aged 65 and older, and a State administered, but federally overseen, welfare-based Medicaid program that addresses more LTC issues, there already is substantial variation in the types and amount of services provided. Some of this variation is geographic. Rural areas usually have a more restricted supply of services than do more urban areas. Some is based on wealth; affluent areas usually offer more than areas of poverty. But much of the difference seems to be based on other factors. For example, Medicare expenditures per enrollee vary by more than a factor of 100 percent across States for a mandated equivalent package of benefits. The spread in Medicaid payments and covered services is even greater. As Federal participation is capped, the variation can be expected to widen dramatically. People with ADRD may be adversely affected as services designed specifically to meet their needs, especially those intended to support the informal care system, are assigned low priority. To the extent that organizations seek to enroll participants, people with ADRD may be shunned under the belief that they will present too great a burden for the reimbursement available, although this assumption is not supported by research.

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What Is Different About Providing Care to People With ADRD?
Beyond the care burdens associated with ADRD, these patients present special problems in developing a rational approach to care. Caregiving burdens are exacerbated by the nature of the disease, especially for informal caregivers, who often must contend with intimate relations with people who are cognitively deteriorating with no obvious concomitant physical signs. These patients also may be shunned by the traditional care system, which sees them as simply too difficult to manage easily.

From a medical perspective, many ADRD patients are physically well except for their cognitive problems. They may be ignored by the medical community because of a sense of impotence about how to manage them and a misperceived threat of high costs. The care needs of ADRD patients are not a part of the repertoire of most primary care providers.

In a social environment that places increasing emphasis on the importance of consumer choice, diseases like ADRD, which attack cognitive function, make it much more difficult to assess patient preferences or even to determine when a treatment is having a positive effect. Much of the response burden is necessarily transferred to proxies, who may or may not be in a position to accurately reflect the preferences of the patients themselves. Moreover, studies of the utility weights (the relative importance) assigned by others to the potential outcomes of care for people with ADRD suggest that the general population has a lower level of concern for the success of interventions directed toward such individuals compared to services for those deemed cognitively competent (Kane et al., 1986). 

In large measure, ADRD remains a family affair. The care and the burdens of the disease mean that families are virtually as much the victims of the disease as the patients themselves. Hence, treatment programs need to address these families, at the same time that such strategies may not be highly valued because of budgetary cuts. The Alzheimer's Association continues to play a major advocacy role for families, and may expand their role in the development of clinical care programs and service provision in response to managed care initiatives. Family caregivers at four recent forums sponsored by the California Caregiver Resource Centers, for example, consistently reported that what they wanted from LTC services was flexibility to meet individual and family needs, consumer choice, accessibility to affordable care, and assurances that there will be continuity of care. Other issues highlighted were caregiver support services, legal/financial concerns, and meeting the needs of an ethnically diverse caregiving population. 

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Current Themes Affecting ADRD Care

A. Managed care
Managed care has been seized as a potential solution to the escalating cost of health care. Managed care combines the familiar insurance function with more direct responsibility for providing the needed care through a defined health care delivery system. Managed care offers some potential advantages for older consumers. It simplifies the current Medicare arrangements by eliminating much of the bookkeeping. It holds out the potential for providing an organized approach to care with the capacity to invest in expertise, structured programs, and a management information system that could minimize iatrogenic complications (such as medication interactions). Such systems also could be used to track patients in order to intervene early in deteriorating conditions or even to screen for potentially correctable problems. Case managers could intervene to prevent the development of major disability and mobilize community resources to provide timely assistance to prevent or delay institutional care. 

The incentives created by capitated prepayment should encourage the development of alternatives to reduce the use of more expensive services. Hence, ambulatory services and case-finding would be encouraged where there was evidence that interventions reduced subsequent resource utilization. 

At the same time, managed care for older people may respond to some undesired incentives. There is reason to believe that the current Medicare health maintenance organizations (HMO's) have benefited from favorable selection, attracting less ill people (Brown et al., 1993). For example, managed care programs are not anxious to enroll older people whom they expect will require more care, such as people with multiple chronic illnesses or those who need special care. They may include people with dementia in that category.

It is less clear how much of this selection occurred by design and how much by chance. Certainly, marketing strategies have some effect, and benefit policies will encourage different types of people to apply. For example, offering a drug benefit would encourage those with multiple chronic diseases to join, whereas a broad range of preventive services might be more attractive to healthier people. Overall, managed care operations anxious to maximize profits will opt not to provide services as long as the omission does not produce a problem. For older people, this strategy may mean foregoing services that have as yet unproved value. Those services not tested may be assumed to be ineffective. 

Growth in managed care among both privately and publicly insured groups also produces a number of inconveniences. Choice of care provider is restricted. Some people may have to give up the physician or hospital with which they are familiar. Some programs may introduce various procedures to reduce the use of specialists, such as waiting lists for a restricted panel of specialists, requiring a formal referral from the patient's primary care physician, or having some form of case manager authorize the visit. 

To date, the track record of managed care serving older people has not been exemplary. Although some Medicare HMO's have developed innovative geriatric programs (Fox et al., 1991), most essentially have done business as usual, with little adaptation to respond to a geriatric clientele (Friedman and Kane, 1993). Indeed, there is some reason to suspect that Medicare HMO's may be reluctant to establish active, visible geriatric programs for fear of attracting too many frail older people. Anecdotal information suggests that managed care organizations may be using more registry nurses for home care and hence reducing continuity of care. A study of Medicare home health care indicated that managed care was associated with fewer visits and poorer outcomes (Shaughnessy et al., 1994). 

A few geriatrically-oriented models of managed care have been developed that include at least some efforts to bridge the service gap between acute care and LTC. The two most prominent models are the Program for All-Inclusive Care for the Elderly (PACE), which is a series of replications of a model originally developed by On Lok in San Francisco's Chinatown. The PACE programs serve frail older people, most of whom are covered by both Medicare and Medicaid. They use an integrated approach to care built around a day health care center to emphasize active primary care and creative service packages as a means to reduce the use of acute and long-term institutional care (Kane et al., 1992; Branch et al., 1995). Many of their clients suffer from dementia, to the point where some PACE programs were concerned about enrolling too many clients with dementia.

The second model is the social health maintenance organization (S/HMO). This approach combines the Medicare HMO with a limited LTC benefit. It features active case management and varying degrees of geriatric programming. The first series of four S/HMO's originally was designed by Brandeis (Leutz et al., 1991). The evaluation of these programs suggests that they had, at best, modest effects on changing the health status of their enrollees (Manton et al., 1994). A second set of S/HMO's has been chartered by the Health Care Financing Administration. These programs will utilize a more intense geriatric approach. They will not be able to control the proportion of enrollees who are severely disabled, but will receive different levels of capitated payment based on the risk of greater utilization of services. The S/HMO's receive 100 percent of the Medicare Average Adjusted Per Capita Cost (compared to the 95 percent other Medicare HMO's receive) and use a special rate cell risk adjustment that pays them more for people who are more disabled (and correspondingly less for enrollees who are healthy). Although there is no specific prohibition against enrollees with dementia, there are no specific S/HMO programs to address their needs. 

People with dementia are not likely to be attractive to managed care organizations. They are expected to cost more. They are more difficult to manage. They may require special programs. It is, therefore, unlikely that HMO's will develop programs to recruit such members unless special incentives are created. However, managed care could serve as a useful vehicle to develop coordinated care for people with dementia. 

The data available do not support concerns about extra costs. The studies by Hay and Ernst (Hay and Ernst, 1987; Ernst and Hay, 1994) suggest that the added costs involve some one-time diagnostic costs (not applicable to most people already diagnosed) and nursing home care (not covered by Medicare HMO's). There was some modest additional cost ($375-$1,200) associated with hospital care, but most of this cost seems to be attributable to delays in discharge associated with placement problems. These issues should be more effectively dealt with in a managed care setting, which has access to case management and the potential for making more efficient arrangements for post-hospital care. Rice and colleagues also found additional hospital costs in about the same range (Rice et al., 1993). They noted substantially increased costs related to institutional care and social services (both not covered by Medicare, although the working definition of home health care under Medicare is broadening). A Canadian study found no increased cost for hospital care. Most of the increased costs were attributable to LTC services in institutions or in the community (Ostbye and Crosse, 1994). Other older, more confined studies also have shown increases in hospital lengths of stay (LOS), usually associated with care planning difficulties (Fields et al., 1986; Levenson et al., 1990; Saravay et al., 1991). Other studies have found no difference in the rate of hospitalization or LOS for patients with dementia (Ganguli et al., 1993; Welch et al., 1992). 

At the very least, better studies and experimentation around this issue should be encouraged and efforts should be made to establish actuarially sound capitation rates for government (and perhaps private) programs based on the real financial risks presented by clients with dementia. 

B. Integrating Acute and Chronic Care
As noted, several managed care programs have made at least partial efforts to integrate, or coordinate, acute care and LTC. The two efforts certainly are linked. People receiving LTC need good primary care; and acute care, especially the hospital, often is the entry point for LTC. LTC is the component of comprehensive health care in which services are provided to frail elderly and disabled people of all ages and their families to promote or restore health or minimize the effects of illness and disability. Techniques such as case management, which devote extra efforts to coordinating care, can prove effective in controlling the costs of such care by avoiding iatrogenic complications and addressing incipient problems early. In this sense, case management serves not simply a gatekeeping, or resource control role, but becomes an extension of primary care. In the case of ADRD, special planning to be sure that medical problems are addressed promptly can avoid later complications. For example, special attention to medication management to be sure that the right drugs are taken as prescribed and that early signs of adverse side effects are detected can prevent hospital admissions. Prompt attention to issues around discharge planning can prevent extended hospital stays while waiting for resolution of caregiving crises. 

Conversely, better coordinated LTC, including attention to caregivers, can reduce the need for acute interventions around crises. More individualized care plans, which are based on a better understanding of individual client preferences, may avoid the use of psychoactive drugs that invite iatrogenic complications. A systematic approach to dementia care for nursing home residents, which included activities, guidelines for the use of psychotropic drugs, and educational rounds, was shown in a randomized controlled trial to be associated with a reduction in behavior disorders and less use of antipsychotic drugs or physical restraints (Rovner et al., 1996). Housing arrangements that provide greater levels of independence and privacy likewise may alleviate the need for such medications to control disruptive behaviors.

More effective information systems are needed for patients with dementia and their families, as they move between levels of care. For example, a Cleveland project provides information about ADRD, services, and research, as well as an electronic support group on the Cleveland Freenet.

Cognitive problems can interfere with people's ability to make choices. For example, Joanne Lynn found that some impaired individuals could not understand complex changes in the Medicare benefit she was proposing as part of a tradeoff of acute care for more LTC (Building Health Systems for People with Chronic Illness newsletter, Vol. 1, No. 1, October 1994, Robert Wood Johnson Foundation).

C. Balance Between Community and Institutional Care
For many Americans, access to LTC services is problematic. Issues of equity of access to LTC for the dependent elderly focus on the shortage of in-home and community services to support family caregivers. There are wide disparities in the availability and access to community services by geographic region, ethnicity and race, class, and gender (Estes, 1993). Public expenditures for community-based services are relatively small compared to those for nursing home care (O'Shaunessy and Price, 1987). Medicaid, which is the principal source of funding of health care services for low income people, finances mostly nursing home care and was not designed to support a full array of social and other long-term community-based care services. Expenditures for LTC in 1993 were estimated to be $74.9 billion for institutional care ($36.9 billion Medicaid/$4.8 billion Medicare) and $32.9 billion for home care ($7.1 billion Medicaid/$10.7 billion Medicare). The Administration on Aging (AoA) also provides some funding for HCBC to support some portion of personal care at home. 

Although public costs for LTC are growing, a substantial proportion of the direct costs for this care still are paid "out of pocket," and by far the largest share of the indirect costs of ADRD are borne by families. There is concern that limited access to services or overly burdensome out-of-pocket expenses, such as costs of remodeling to accommodate assistive equipment for the functionally dependent, cause many elderly and their informal caregivers to choose institutional placement (Kovar and Harris, 1990). Others, most often widowed and childless older adults with severe dependencies, cannot get the care they need unless they enter a nursing home. A substantial share of community dwelling elderly in need of assistance with one or two activities of daily living (ADL's) or instrumental ADL's need more help than they actually receive (Scanlon, 1988). 

While there is consensus that health care reform should include services in and among multiple settings and the plan proposed by President Clinton (the Health Security Act of 1993) included LTC provisions (Kane and Kane, 1994), no specific plan has yet evolved to meet the diverse and complex needs of all people who require LTC (Rantz, 1993). People with ADRD, the functionally dependent elderly, and the chronically ill of all age groups are among the most disadvantaged for access to LTC, especially HCBC. This is especially true for those who live in rural areas of the United States; are members of ethnic and racial minorities; or are poor, uninsured, or under-insured.

The National Chronic Care Consortium, a vanguard group of organizations concerned about bridging the gap between acute and chronic care, should be encouraged to direct some of its attention specifically to issues of caring for patients with ADRD. Several issues deserve special attention:

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A. Home and Community-Based Long-Term Care
Home and community-based services usually are planned and coordinated by an agency using employed staff or contractual arrangements. HCBC is different from nursing home care in that services are provided to people living at home or in a homelike environment rather than requiring recipients to be residents of institutions (Miller, 1991). 

The objectives of the services are to assist disabled individuals with basic tasks of living and/or to provide relief to their caregivers. HCBC covers a broad range of services that extend from skilled-level, medically related services with professional staff to social support services provided by nonprofessionals or informal caregivers (family and friends). Ideally, the formal (paid) community-based services should complement rather than impede services provided by informal caregivers. About 75 percent of the impaired/disabled elderly living outside institutions rely solely on informal care (U.S. Senate, 1988).

For every person currently receiving institutional care, there are an estimated four more people in the community who require some form of LTC (U.S. Senate, 1988). By the year 2000, 18 percent of the elderly (over 5 million) are projected to have some impairment that requires the help of others. About 5 percent (1.75 million) of these people will be in nursing homes or other institutions, but a staggering 3.5 million needing substantial LTC will not be institutionalized. Approaches to this looming problem include: (1) reducing the need for home care by improving the health of older people; (2) providing home care when disability and frailty preclude continued independence and self-care; and (3) improving integration across the total continuum of care, and coordinating different care providers who subscribe to a broad view of health care that includes both medical and social components.

Unfortunately, HCBC often is "piecework and patchwork" (Kane and Kane, 1987) and characterized by inaccessibility, poor care, unskilled personnel, high out-of-pocket costs, and inadequate linkages to other services, rather than a comprehensive array of services. Miller (1991) provides a taxonomy of services and caregivers in the HCBC domain including five main categories of services

  • Assessment, information, and referral services that include services to help people find and coordinate home care.

  • Health and support services that include medically related home care and personal and custodial in-home care.

  • Community-based out-of-home services.

  •  Living arrangements representing a continuum of living options that provide assistance services short of institutionalization.

  • integrated systems illustrating an array of services that combine financing and care delivery, including medical and social support services that promote independence and quality of life. 

B. Rural Health Care
Several special groups do not receive adequate LTC services. For example, minority women, impoverished elders, and those without families are especially disadvantaged. Earlier reports have highlighted the gaps in our knowledge about how ethnic and cultural issues may affect care for ADRD (Advisory Panel on Alzheimer's Disease, 1993). Another large group that faces special problems in responding to the challenges of ADRD is the part of the population living in rural areas. In many rural areas the health care service delivery system is impoverished and fragmented; the health, mental health, and social services cannot support people with ADRD and their caregivers. Many services, such as nutrition, adult day care, case management, and transportation, simply do not exist outside the county seat. Improving accessibility to diagnostic services in rural areas, such as through the development of mobile diagnostic clinics or telemedicine, also is essential to rule out reversible dementia’s and to establish standardized diagnostic criteria for clinical and research purposes. Follow-up networks (coordinated by the Area Agencies on Aging) linked to diagnostic evaluation could facilitate the development of statewide ADRD registries, which could enhance epidemiological research efforts and facilitate efficient and standardized collection of data to aid State Governments in planning for future care needs. 

Even where chore and companion services are available, rural caregivers have limited access to them because there are few mechanisms for communication and articulation of available services. The cost of long distance telephone calls prohibits some caregivers from inquiring about available services, and there is no central repository for current and accurate information on resources, regulations, etc. Better information/dissemination mechanisms in rural areas could help address the isolation of both patients and caregivers. A diverse array of health care professionals are in short supply in rural areas; most rural nursing homes do not offer the full complement of health care services (e.g., social services, physical therapy). Many home care programs are based in struggling rural hospitals and lack the full range of services needed by people with dementia. 

Counseling and mental health services are needed to assist caregivers in dealing with issues of burden, anger, and depression, and in coping with behavioral and emotional manifestations of ADRD. There is some evidence that providing support to caregivers can reduce the incidence of depression and the consequences of such (Mittleman et al., 1995). Outreach programs, based in community mental health centers (CMHC's) serving rural catchment areas, also are needed to provide case-finding and in-home treatment, and sponsor support groups for caregivers and people with dementia. 

In a recent survey of 107 rural Iowa caregivers, only 51 percent reported using any community-based services. The average cost to them was $73 per month, borne largely out of pocket. Caregivers reported being motivated by a religious ethic in their caregiving responsibilities and felt a deep sense of personal satisfaction and growth from the experience. Respondents indicated that they were not interested in resources outside of family and friends, in part because they were concerned that confidentiality would be a problem in their rural communities and that help from agencies would be "too close to charity" (Buckwalter et al., 1995). These values, beliefs, and the stigma associated with the use of counseling/mental health services may account in part for the low use of formal services reported, and deserve further investigation. As part of a study of Ohio's PASSPORT program, a Medicaid waiver program for community-based care, investigators found that more than half the cases they investigated affected a client who was cognitively impaired. Rural clients were enthusiastic about the program and felt that the funding was creating services that reached them (Applebaum, 1995). A current demonstration project sponsored by the Health Resources and Services Administration (HRSA) is testing different types of support and services for ADRD patients and their families. 

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4."New" Forms of Care for People with ADRD 

A. Special Care Units (SCU's)
SCU's were developed in the 1980's as LTC settings attempted to better meet the needs of people with dementia and to protect residents without dementia in nursing homes. In addition to the growing number of elders, the recognition that people with dementia have different care needs from those who are physically frail, and concern that traditional nursing home care has not been responsive to those needs, families and caregivers have created strong interest in establishing specially tailored care for this group (Ory, 1995). At present about 15 percent of nursing homes, representing approximately 2,500 units and more than 50,000 beds, have a SCU or specialized program for people with dementia. Although there has been a clear pattern of growth in SCU's for the past decade, it is less evident whether that trend now has leveled out. The great diversity among SCU's, together with other conceptual, methodological, and measurement issues (e.g., insufficient sample size, high attrition, lack of rigorously controlled studies, ambiguities in definition and selection of units, difficulties in measuring outcomes in a communication-impaired population, and problems related to assessing change and effect over time), have hindered examination of the influence of SCU's on patients (Ory, 1995). Moreover, these studies may reflect potential sources of bias (Sloane et al., 1995).

The NIA Collaborative Studies Initiative was established to address SCU research from a variety of perspectives. Currently, 10 funded studies are included in this 5-year research consortium with goals of identifying key elements of care and appropriate outcomes, evaluating their effects, facilitating standardization in the definition of SCU's, developing consensus on common data elements, and encouraging cross-site analyses to enhance sample size. Because of setting limitations, most of the collaborative studies use epidemiological methodologies to compare care and outcomes in SCU's versus traditional nursing home units, rather than randomized controlled clinical trials (RCT's). However, RCT's may not always be the best design for evaluating interventions related to the milieu. Many of the studies also examine outcomes related to staff, family, other residents without dementia, and case mix/reimbursement issues.

Family members, providers, and policymakers need to know if SCU's are effective, for whom, and at what cost, if they are to avoid paying more for care that is not truly more "special" or beneficial. Moreover, restrictive regulations could stifle innovation that may enhance functioning and quality of life for residents with ADRD, their families, and staff caregivers (Ory, 1995). As the concept of specialized care moves into other community-based settings such as adult daycare centers and assisted living, it becomes increasingly important to be able to define what makes special care "special," and to articulate the effect associated with different types of specialized dementia care across the entire continuum of care settings. Finally, the "outfall" from the NIA collaborative studies also is expected to increase understanding of related issues in this population such as functional assessment, and to refine methods for assessing small changes over time, standardizing environmental measures, and developing typologies for use in evaluating different care settings (Ory, 1995). 

The results of the collaborative SCU studies will need to be reviewed carefully. Likely they will reveal a mixed picture, with some outcomes showing favorable differences and others not. It will be important to identify the components of care that seem to account for observed benefits and to recognize the areas where SCU's are not effective. A critical question will be whether such care can be cost effective (i.e., can the resources currently invested be better used). At a time of tight fiscal pressures, proposals for increased spending are not likely to find enthusiastic reception, especially if the gains are modest. 

Despite these good beginnings, more rigorously controlled research is needed on the effects of various interventions in SCU's and community settings and with families. For example, the value of intergenerational programs and opportunities for young people or intellectually intact elders to provide care for patients with ADRD needs to be examined. More work also is needed to enhance conceptual and methodological efforts to evaluate program effectiveness. Promising directions for future research related to special care for people with dementia fall into three major themes: (1) What individual elements of SCU's make a difference? (2) What interventions work? and (3) Expansion of the settings for care.

B. Home and Community-Base Care
A perceptible shift is occurring in the preferences for the site of LTC. For several reasons, we are witnessing expanded interest in HCBC. Although it is by no means always the case, some see it as less expensive. Others view it as a response to the need to develop alternatives to the medical model emphasis in most LTC facilities, and still others believe it improves quality of care and quality of life. A review of the effectiveness of community-based LTC, a substantial portion of which affects people with dementia, finds a mixed bag of results. Other than meeting unmet needs, the majority of studies failed to show significant positive results (Weissert and Hedrick, 1994). Nonetheless, enthusiasm for community-based care remains high. More research is needed to document these perceived improvements over traditional forms of LTC (e.g., nursing homes). 

New forms of HCBC are being created. These include a range of State licensed and unlicensed residential living environments such as small group homes for the aged, adult foster care, residential care facilities, and assisted living arrangements (Wilson, 1994). At present we have little basic descriptive information about these types of residential care facilities or about the characteristics and needs of the growing number of residents who inhabit them. 

Adult Foster Care Homes (AFC's), also known as board and care homes or family care homes, are State regulated, generally small (usually not more than five clients per home) residential sites that provide housing and protective oversight. It is estimated that over 60,000 State licensed AFC's exist nationwide, a high percentage of which provide care to frail elderly clients. AFC's probably provide care to large numbers of older adults with early and middle stages of dementia as well, although the precise number is unknown. Yet, extremely limited information is available about care processes and outcomes for residents with dementia in these settings (Collins, 1994).

One recent secondary analysis of survey data from families of people with dementia begins to provide an indication of perceived quality of care from the perspective of family members (Collins 1994). However, these data are limited by lack of information on the person with dementia (e.g., stage of disease), as well as knowledge of whether or not the AFC's represented in the survey were dementia specific. Overall, family members of people with dementia residing in AFC's reported a high level of satisfaction; 90 percent of family respondents indicated that the care met their expectations; and 66 percent said their loved ones adjusted well, while 7 percent reported poor adjustment. Families reported a higher level of overall care in smaller homes (less than 15 beds) compared to larger ones. 

Based on the findings from this preliminary survey, from the families' perspective, it appears that AFC's are a viable residential care alternative for people with dementia, certainly worthy of closer scrutiny for the potential of these settings to provide high quality care in a smaller, more homelike environment. Of course, family satisfaction is only one of many outcome measures that need to be examined. The answers to the questions of for WHOM (in terms of older adults with dementia) these settings are best suited, WHEN in the dementia continuum they work best, and HOW dementia care is and should be provided await further research (Collins, 1994). 

An analysis of the regulation of board and care homes suggests that much of this care (including assisted living) is unlicensed (Hawes et al., 1995), although there are approximately 34,000 licensed board and care homes with more than 613,000 beds. The report calls for improvements in quality through licensure with or without heavy regulation, and indicates that broad State regulation and licensure of board and care homes may be necessary to improve the safety, quality of life, and quality of care. For example, the report indicates that 40 percent of board and care residents are cognitively impaired and 41 percent are on major psychotropic medications without adequate medical or nursing monitoring. Licensed homes were found to provide more supportive services, operator training in care of the elderly, and less use of psychotropic drugs and medications contraindicated for use in the elderly than unlicensed board and care homes. Extensive regulation and licensure did not appear to affect the proportion of professional nursing staff, knowledge of care procedures and appropriate monitoring of health conditions, or more "cosmetic" features such as availability of physical amenities and attractiveness of the homes. 

A recent report on State statutes and regulations for Assisted Living (Mathews and Mathews, 1995) noted that at least 86 different titles were used to classify these facilities nationwide, including "residential," "adult," "foster," "family," "boarding," "domiciliary," "home," and "assisted living." In addition, great variation was noted in inspection mandates, the nature of licensure, minimum/maximum number of beds, penalties for violations, and staffing. Only 3 percent of the facilities reviewed in this survey of statutes and regulations described themselves as "dementia-specific." 

There also is a lack of Federal guidelines to standardize residential care. State regulations vary widely regarding environmental, programming, and nursing care standards, with minimum staffing ratios ordinarily quite low. Although residential care settings vary in size from small private homes for up to 4 residents to large congregate care facilities for more than 100 residents, all offer assistance/care and share with residents the responsibilities for ADL's. Ideally, the care provided is flexible, resident and family oriented, and intended to optimize individual dignity and enhance health status, functioning, and well-being. The physical environment and design features of the facility should support the functioning of the impaired older adult and accommodate behaviors and diminished abilities (Alzheimer's Association, 1994). It has been suggested (Tanner, 1994) that a residential Alzheimer's disease care facility with an aide to resident ratio of 1:5 can care for even severely cognitively impaired residents, and that desirable program and care planning characteristics include the following

  • A supportive and low stress environment 

  • Services that match the stage of the disease process

  • Resident care without unnecessary chemical and/or physical restraint 

  • Good support systems for families and staff

The Alzheimer's Association monograph, Residential Settings: An Examination of Alzheimer Issues, reviews the range of residential settings. It presents a conceptual model illustrating the many issues that need to be addressed, including: philosophy; practice issues such as admissions, staffing patterns, and training; environmental factors such as a supportive physical environment; macro influences and factors (e.g., regulatory process, public funding, market forces) and micro influences and factors (e.g., regional influences, operator specialization); and outcomes/success indicators. Notable from the health services research perspective is the paucity of information beyond anecdotal provider reports of what is needed for "Alzheimer's-friendly" care to be accessible, affordable, and appropriate in residential facilities.

C. Assisted Living
Over the last decade, research on LTC services for people with ADRD has focused heavily on two ends of the LTC continuum--nursing homes and community-based services. While researchers and policymakers have been investigating these care systems, another segment of LTC--assisted living--has emerged that is neither nursing home nor community care as it has been previously defined. Defined broadly, assisted living is any group residential program not licensed as a nursing home that can respond to unscheduled needs for assistance. The spectrum of assisted living services includes such diverse options as congregate housing, residential care facilities, and adult foster care homes (Collins, 1994); and the package of services can be tailored according to consumer needs and preferences. 

Recently, assisted living has been defined more specifically as a service that combines the nursing home's institutional efficiencies of co-locating many clients with a greater emphasis on preserving the homelike qualities of control over one's personal space. Indeed, many nursing homes violate the elements traditionally associated with culturally and socially relevant definitions of "home," in that residents have little control over whom they live with, who comes and goes in their personal space, and other aspects of the environment such as furnishings and appointments. Assisted living is a model of supportive housing that is growing rapidly because of consumer preferences and costs associated with traditional models of LTC (Wilson, 1994). 

In assisted living settings, clients are viewed primarily as dwellers in apartment-like settings, where they can exercise all the autonomy that accompanies such a situation. Hence, they can decide whom to admit and when to do things. Families of patients with ADRD often prefer the ability to purchase only those services they need and thus conserve resources. In many cases, essential services tailored to the client's needs can be delivered to the client in his/her dwelling without the heavy travel costs usually associated with home care. In essence, assisted living has the potential to combine the features of home care and nursing home, without some of the liabilities of each (Kane and Wilson, 1993). 

At the same time, assisted living is viewed by some as a return to an earlier time when nursing homes provided less sophisticated care and were less intensively regulated. The standards for assisted living should not allow substandard care, but neither can the regulatory mechanisms so restrict care as to recreate nursing home conditions. Accountability must be based on some type of outcomes system that permits innovation while maintaining quality.

The State of Oregon has been a leader in developing standards of assisted living for licensure and evaluation of resident outcomes. In Oregon's model program, residents are entitled to a private apartment, shared only by choice, that includes a kitchen, bath with roll-in shower, locking doors, and temperature control capability. The overall shelter costs are not substantially higher in assisted living than in nursing facilities (Wilson, 1994). Routine nursing services and case management for ancillary services are provided. Most importantly, the orientation of staff toward the residents is to empower them by sharing responsibilities, enhancing choices, and managing risks (Wilson, 1994).

A variety of other approaches to assisted living, including statutory changes, demonstration projects, and rule amendments, have been tried in other States with varying degrees of success. Part of the problem is that there is no agreed-upon definition of what constitutes assisted living, except that it is a form of supportive housing.

Although some claims have been made that people with ADRD, even in advanced stages, can at the very least be as effectively managed in assisted living settings as in nursing homes (Brown et al., 1993), there is as yet no empirical evidence to assess the effectiveness of such care for people with ADRD. A strong case can be made that by providing separate accommodations for clients, assisted living provides a prima facie argument for improving the quality of life for cognitively intact people who may share the same facility with people with ADRD and may offer an environment to allow people with ADRD to function without the need for as many external controls. However, this assumption needs to be tested. Although data show that residents in assisted living facilities in Oregon have a substantial level of disability--84 percent with some mobility impairment, 75 percent requiring assistance with medications, and 63 percent requiring assistance with bathing (Wilson, 1994)--more widespread and systematic evidence is needed of the capability of assisted living settings for managing patients with dementia (and at what stage of the disease process they are most suitable). Wilson (1994) has identified four general issues that have arisen around the assisted living movement, which also should be addressed in the context of people with dementia:

  • Who should be served by assisted living?

  • What services should be provided?

  • How will services be delivered?

  • What setting works best for assisted living? 

Moreover, the distinction between assisted living facilities and other types of residential care facilities often is unclear. To date, little evaluative research has been conducted on assisted living facilities. There remains a need to develop research-based typologies for assisted living facilities as well as other types of residential care facilities (e.g., board and care, homes for the aged, adult foster care homes) to be able to design and implement credible evaluative studies and to address other concerns, as noted below.

Some observers of assisted living express strong concerns that the lower levels of staffing represent a throwback to the nursing home care when Medicaid was first introduced. They worry about the lack of professional oversight and the concomitant potential for resident problems.

D. Adult Day Centers (ADC's)
The numbers of ADC's have grown from about 15 in the 1970's to more than 3,000, with a projected need for 10,000 centers nationally. Adult day services, which provide daytime care and activities in congregate community settings, are being touted as the "un-nursing home" (Partners in Caregiving: The Dementia Services Program, 1995) and are defining themselves as the "cornerstone of community-based LTC." Two projects funded by the Robert Wood Johnson Foundation, the Dementia Care and Respite Services Program (1988-1992) and the Partners in Caregiving: The Dementia Services Program, still underway, were designed to demonstrate the effectiveness of ADC's in serving people with dementia, while at the same time achieving financial self-sufficiency.

Proponents view adult day programs as a major solution to the need for LTC alternatives, and bemoan their lack of public awareness (Reifler, 1995). They urge that adult day services become part of any mandated comprehensive service "package" for both custodial LTC and post-hospital care. Currently, Medicare does not reimburse for ADC, and Medicaid dollars for adult day programs vary from State to State, with some providing adequate reimbursement, while others suffer from insufficient funding, or none at all (Partners in Caregiving: The Dementia Services Program, 1995).

More rigorous evaluation research is needed if adult day programs are to convince policymakers and consumers that they are an essential component of the LTC continuum. Studies must determine the true costs associated with adult day services, and compare cost and patient clinical outcomes with 24-hour institutional or home care with options such as ADC's as part of an integrated service network. ADC's will have to be able to demonstrate their cost-effectiveness; however, to do so, they must first determine what constitutes "effectiveness" and "good care" for this population, and what appropriate outcome measures, from a lifetime perspective, would be--survival time? quality of life? patient and family satisfaction? family burden? (Partners in Caregiving: The Dementia Services Program, 1995).

Recommendations were set forth from a mini White House Conference on Aging, related to adult day services in the areas of financing/funding; education/public awareness; tax credits/deductions; private sector initiatives; regulations; and research.

This information is available courtesy of the NIMH.  It is in the public domain and can be downloaded, reproduced, or copied without permission. For more information go to http://www.nimh.nih.gov/practitioners/patinfo.cfm

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