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ADRD Care |
Alzheimer's
Disease and Related Dementias:
Health
Services Questions
1.Changing Government Policies 1.Cutbacks in Medicaid Government at all levels is looking for methods to reduce its obligations for supporting care. If responsibility for LTC under Medicaid becomes primarily a State-directed program, the disparities that already exist among States will likely increase. At the same time, States will have greater opportunities to pursue innovative programs. For example, only a handful of States have actively undertaken programs to shift the primary site of LTC from institutions to the community. Federal waiver requirements have held States to a tight substitution standard designed to prevent the overall growth in program expenditures. Most States face serious problems with regard to LTC. Medicaid expenditures have become a major component of their budgets and LTC usually receives the largest share of these funds. They are thus not anxious to increase spending in this area, although demographic forecasts suggest that such a shift is inevitable. Most of the Medicaid LTC dollars currently flow to nursing homes, which nonetheless regularly complain of being under-funded, especially in light of the ever greater demands made on them by regulatory efforts for better quality. In most States, nursing homes have developed formidable lobbying efforts to argue their case. Hence, any efforts to redirect the balance of care between the nursing home and HCBC are likely to encounter substantial political resistance unless it is done as part of a package to add new resources, which does not seem a likely scenario in an era of budget tightening. Moreover, as responsibility devolves to the individual States, the planning and political process is diffused. No central policies are feasible. The shift to greater State control inevitably will exacerbate the already large variation in the types and intensity of LTC services. Today, the level of investment in Medicaid-supported LTC varies widely. For example, 1992 total annual State expenditures on LTC per person aged 65 and older ranged from $2,720 in New York to $349 in Arizona. State annual expenditures on nursing home care per person aged 65 and older in that same year ranged from $1,555 in Alaska to $294 in Arizona. 2.Training Primary Care Providers Currently, the modest Federal support specifically targeted at increasing geriatric content in health workforce curricula is being threatened with discontinuation as part of general budgetary reductions. The need for better trained personnel to work with ADRD clients already has been addressed in an earlier Panel report (Advisory Panel on Alzheimer's Disease, 1991). Despite the calls for more and better prepared primary care providers to meet the needs of a growing population of older people (Kane et al., 1980; Institute of Medicine, 1993; Reuben and Beck, 1994), substantial gaps still remain (Reuben and Beck, 1994). In addition to physicians, geriatric nurse practitioners have been shown to be an effective source of care for frail older people (Mezey et al., 1989; Kane et al., 1991; Mundinger, 1994; Shaughnessy et al., 1995). However, little specific training in the diagnosis and management of Alzheimer's disease is offered in general training programs for either medicine or nursing (National Forum on Geriatric Education and Training White Papers, 1995; Stolley et al., 1991). 3.Boundary Issues The role of Medicare in providing long-term services has begun to increase as the result of broader interpretations of regulations governing home health care. Medicare-supported home health has come to cover longer stays and hence more visits per recipient (Vladeck and Miller, 1994). But these changes have not had a substantial direct benefit on ADRD clients because the initial reason for covering home health care still must relate to an acute problem that is expected to either improve or worsen. At least one Medicare program, the S/HMO's, is providing some, albeit modest, coverage for LTC. Such a step represents a cross-subsidy for Medicaid because at least some of the care provided under this aegis otherwise might have to be covered by the Medicaid program. As pressures on Medicaid programs increase, they can be expected to look for other opportunities to exploit Medicare services. At present, Medicaid is more likely to subsidize Medicare than the reverse. Programs designed to provide better or more intensive care to patients in nursing homes, for example, prevent hospitalizations, which are paid for by Medicare. Although one currently operating program, Evercare, uses a Medicare capitated contract to cover both hospital care and medical services for nursing home patients in an effort to reduce hospitalizations, it must rely on either the willingness of nursing homes to provide more intensive care or find some incentive for them to do so (Malone et al., 1993). Better integration of Medicaid and Medicare payments would encourage more creative approaches to integrating the care being supported and may lead to overall savings, as well as addressing current concerns about people with dementia being relegated to the "no care" zone, that is bounced back and forth between services in response to increasing restrictions in Medicare and Medicaid spending (Estes and Swan,1993). 2.Client Preferences and Ethical Concerns 1.Client Preferences Although there is increasing rhetoric about the need for more client-directed care, the likelihood of providing such opportunities in an era of constrained resources seems small. Some have used client-directed care as a code phrase for some form of voucher, which would limit the government's responsibility for paying for care. However, even proponents have not made clear just how the government could limit its responsibility short of contracting all care to private providers who would assume full risk. Many fear the consequences of such action, worrying that substantial underservice would result. Because dementia patients, by definition, have lost their capacity for judgment, they cannot be expected to express strong preferences or to be in a position to assume control of their own care. This may be a particular problem for people without families and those who develop dementia after placement in an institution. Some sort of agents will be needed. Putting money into the hands of family members raises concerns about the so-called "woodwork effect" (i.e., inducing demand). However, many of the fears about creating excessive demand by offering community services have not been borne out by experience (Lawton et al., 1989). Indeed, an important question to be explored is why many supportive services for ADRD patients and their families, which some champion as sorely needed, often go underutilized. Issues related to the effectiveness, accessibility, and other barriers to use of available services deserve further attention. On the other hand, it is likely that offering payment for informal care might induce a demand for service, simply because such a policy offers to pay for what already is being done. Perhaps a demonstration project is most suitable to test the effects of such a strategy. 2.Ethical Concerns A question that haunts all discussions of LTC is the extent to which clients should be empowered to make choices about their care. Although much is said about the need for more client-centeredness and even client control, serious concerns are expressed about the dangers involved in clients (or their agents) making bad decisions. The right to folly is not guaranteed, especially if society retains a residual obligation to deal with the results of a poor choice. Our society has not reached the point where it can act like a private insurance agency, monetizing its obligations to a client and negotiating a fixed payment that absolves it of further responsibility. As a result, we feel a need to protect people from themselves, relying on professional guidance to direct, or limit, choices among those deemed appropriate. The tension between assuring responsible action and offering clients real options persists (Kane, 1994). It would be easier to advocate for freer decision-making if the conditions for making good decisions could be met. These conditions include good information about the risks and benefits of each of various options and a clear expression of the values the client places on alternative outcomes as a basis for calculating the options that maximize the most desired events. With most LTC, and especially with regard to ADRD, these conditions cannot be met. An earlier Panel report addressed the problems of assessing the values placed on possible outcomes associated with ADRD (Advisory Panel on Alzheimer's Disease, 1992). The current state of the art does not yield the requisite information base to assess the effects of alternative modalities of care. The past several years have witnessed growing interest in achieving some form of client control through use of advance directives to guide care when the client can no longer speak for him/herself. These directives usually address the avoidance or discontinuance of life support equipment. Closely related to this topic is the whole role of assisted suicide for people who fear living without their cognitive abilities and the potential for developing programs more akin to hospices, which focus exclusively on improving the quality of life of people with terminal conditions. Here too, because dementia robs individuals of their cognitive faculties, it is difficult to talk about quality of life, or at least to know how to assess success in improving it. A more generic question involves redistribution of resources. As society perceives a shrinking pool of resources for frail older people, questions can be raised about how best to distribute them. At present, a guiding principle has been to try to match resources to needs; those who need more care should get it. An alternative formulation uses more of a triage approach, which takes into account the likelihood of benefit. Resources are allocated to those who have both a need for them and a strong likelihood of benefiting from them. Under such a plan, those who are severely cognitively impaired and hence have little ability to express their quality of life might receive fewer services to make these resources more available to those who can better appreciate them. Because such a utilitarian doctrine raises major ethical dilemmas, careful analysis and much discussion are needed to examine the pros and cons of such a principle of resource distribution. Earlier reports from this Panel have addressed the need to find better ways to measure the success of different types of treatment for ADRD, both therapeutic and compensatory (Advisory Panel on Alzheimer's Disease, 1992). The Panel's interest in conducting outcomes research in ADRD and broadening our conceptions of outcome assessment is ongoing, including the planning and coordination of a 1996 conference devoted to outcomes and jointly sponsored by the Alzheimer's Association, Agency for Health Care Policy and Research, and the Panel. The conference is viewed as a forum for identification and exploration of conceptual and methodological issues that must be addressed in evaluating the effectiveness of interventions designed to improve the lives of people affected by dementia. Resource allocation questions extend to distributional issues within ADRD as well. At present, most ADRD care is compensatory rather than therapeutic. That is, the clinical goals are directed at making patients comfortable and reducing stressors associated with the disease rather than seeking some demonstrative improvement in functional state. If services should be allocated on the basis of potential benefit, then those ADRD clients who have the least interaction with their environment should receive only minimal care, freeing resources for those who can appreciate the care more. Such a step would mean pursuing a policy that no longer devotes heavy nursing care to people in a vegetative state, for example, but instead looks for less intensive ways to mange these people humanely. More attention would be redirected to those who were more responsive to their environments in an effort to make those environments more satisfying and less disruptive. 3.End of Life Concerns Because ADRD are terminal illnesses, concern should be directed toward ways of best managing the end of life. For those patients who have reached a terminal stage, some form of hospice care may be appropriate. There is some evidence to suggest that levels of patient discomfort and the costs of care may be reduced (Volicer et al., 1994) and quality of life improved (Collins and Ogle, 1994). Further research is warranted on palliative care approaches in ADRD and on the needs of families who provide terminal care in the home. Measuring Therapeutic EffectivenessMore work is generally needed to assess the outcomes of care for ADRD patients. The Panel is participating in this effort by preparing a companion document devoted to an exploration of the goals of therapy in ADRD, and the general principles underlying the analysis of therapeutic goals. While work is ongoing to seek specific therapies designed to improve cognitive performance for people with ADRD, most of the current treatment efforts are designed to prevent untoward behavior or to reduce the stresses associated with the disease. Fogel has identified five patient-related factors that interact to produce behavior problems, given a specific physical and social environment: perception of current situation, level of arousal, awareness of social context and likely consequences of action, capacity for impulse control, and alternative outlets for self-expression (Fogel, 1994). Several categories of end-points have been identified as outcomes to be considered and measured in therapeutic trials and interventions. These include cognition, physical function, social function, pain and discomfort, adverse behaviors, caregiver stress, and quality of life. Additional factors to be considered include management of co-existing medical conditions, avoidance of iatrogenic consequences, satisfaction with services, and involvement of caregivers in care planning. RecommendationsThe Panel continues to support recommendations originally made in 1992: 1.Specific research should be directed toward exploring a wider variety of living situations for people with ADRD and the effects on function and quality of life associated with these varied situations. 2.Research on support services for people with ADRD and their families (e.g., respite care) needs to address the issue of "dose-response," including better quantification of both elements, the services provided, and the effects achieved. In addition, several new recommendations have emerged that would facilitate research, policy development, and public understanding of alternatives to nursing home care: 3.State and Federal Governments should adopt uniform language to clearly describe for the public the residential care levels of LTC services and definitions of residential care based on the type of LTC services provided. 4.Appropriate assessment of the individual resident's needs (which does not place an unreasonable burden on staff and facilities) should be required before entry into all levels of care in the LTC system, whether publicly or privately financed. 5.Create a centralized national database on home and community-based care capable of generating outcomes information to be used in comparing the quality and cost-effectiveness across all types of LTC. 6.The LTC system should allow and encourage older individuals, including those with ADRD, to choose to live in the settings they desire. 7.More work is needed to establish actuarially sound reimbursement rates based on the real financial risks presented by clients with dementia. 8.Work is needed to assess the relative effectiveness of alternative approaches to LTC (e.g., assisted living) for ADRD clients. 9.To improve rural care, the following recommendations should be considered · More training grants to increase the knowledge base and supply of rural practitioners working with people with ADRD and their caregivers. · More demonstration services grants with rigorous evaluation components to CMHC's, community health centers, and county aging services reaching rural areas to develop, implement, and evaluate multidisciplinary outreach programs for people with dementia and their caregivers. Establish and evaluate information/dissemination mechanisms related to ADRD in rural settings. · Establish and evaluate mobile diagnostic and followup services coordinated by local health care providers with referral to "experts" in remote academic medical centers using innovative technology such as fiber optic networks. 10.Research on dementia care should address how value differences based on ethnicity, immigration status, race, and religion influence caregivers. Do these factors operate differently in rural compared to urban settings? Do these values change over the course of the illness, and are they different among caregivers in various geographic regions? What outcomes are desired by family caregivers in rural settings? What interventions enhance or maintain positive caregiving experiences in rural caregivers? Are they different than for their urban counterparts 11.More research is needed on SCU's with regard to:
12.More research is needed on dementia care in ADC's with regard to the cost-effectiveness of adult day services, including quality of life for both caregiver/family and client/participant. 13.More research is needed on dementia care in assisted living with regard to:
14.Alzheimer's Disease Research Centers should incorporate health services research. Specifically, more information is needed about the patterns of use and related costs for ADRD patients. A longitudinal database combining detailed clinical information with equally precise information about utilization of services would provide a useful basis for many estimations of the fiscal benefits of treatments. ReferencesAdvisory Panel on Alzheimer's Disease. (1991). Second Report of the Advisory Panel on Alzheimer's Disease (DHHS Pub. No. (ADM)91-1791): Superintendent of Documents, U.S. Government Printing Office, Washington, DC. Advisory Panel on Alzheimer's Disease. (1992). Third Report of the Advisory Panel on Alzheimer's Disease, 1991 (DHHS Pub. No. (ADM)92-1917): Superintendent of Documents, U.S. Government Printing Office, Washington, DC. Advisory Panel on Alzheimer's Disease. (1993). Fourth Report of the Advisory Panel on Alzheimer's Disease, 1992 (NIH Pub. No. 93-3520): Superintendent of Documents, U.S. Government Printing Office, Washington, DC Alzheimer's Association. (1994). Residential settings: An examination of Alzheimer issues: Chicago, IL. Applebaum, R. (1995). Evaluating LTC Initiatives in Ohio: Scripps Gerontology Center, Miami University. Branch, L.G.; Coulam, R.F.; Zimmerman, Y.A. (1995). The PACE evaluation: Initial findings. The Gerontologist, 35(3), 349-359 Brown, R.S.; Clement, D.G.; Hill, J.W.; Retchin, S.M.; Bergeron, J.W. (1993). Do health maintenance organizations work for Medicare? Health Care Financing Review, 15(1), 7-23. Buckwalter, K.C.; Russell, D.; Hall, G.R. (1995). Needs, resources, and responses of rural caregivers of persons with Alzheimer's disease. In E. Light, G. Niederehe, and B. Lebowitz (Eds.), Stress Effects on Family Caregivers of Alzheimer's Patients: Research and Interventions, (pp. 301-315). New York: Springer Publishing Company. Collins, C. (1994). Adult foster care for persons with dementia: Family perceptions of care quality. Paper presented at the Gerontological Society of America, Atlanta, GA. Collins, C.; Ogle, K. (1994). Patterns of predeath service use by dementia patients with a family caregiver. Journal of the American Geriatrics Society, 42, 719-722. Ernst, R.; Hay, J. (1994). The U.S. economic and social costs of Alzheimer's disease revisited. American Journal of Public Health, 84(8), 1261-1264. Estes, C.; Swan, J.A. (1993). The Long Term Care Crisis: Elders Trapped in the No Care Zone. Newbury Park, CA: Sage. Estes, C.L. (1993). The aging enterprise revisited. The Gerontologist, 33(3), 292-298. Fields, S.; MacKenzie, R.; Charlson, M.; Sax, F. (1986). Cognitive impairment. Can it predict the course of hospitalized patients? Journal of the American Geriatrics Society, 34(8), 579-585. Fogel, B. (1994). Quality care for the nursing home patient. In J.N. Morris (Ed.), The HRCA Manual, Natick, MA: Hebrew Rehabilitation Center for the Aged, Eliot Press. Fox, P.D.; Heinen, L.; Kramer, A.M.; Morgenstern, N.E.; Palsbo, S.J. (1991). Initiatives in Service Delivery for the Elderly in HMO's (prepared for: The Robert Wood Johnson Foundation): Lewin/ICF, Washington, D.C. Friedman, B.; Kane, R.L. (1993). HMO medical directors' perceptions of geriatric practice in Medicare HMO's. Journal of the American Geriatrics Society, 41, 1144-1149. Ganguli, M.; Seaberg, E.; Belle, S.; Fisher, L.; Kuller, L. (1993). Cognitive impairment and the use of health services in an elderly rural population: The MoVIES Project. Journal of the American Geriatrics Society, 41(10), 1065-1070. Hawes, C., et al. (1995). Analysis of the effect of regulation on the quality of care in board and care homes. Hay, J.; Ernst, R. (1987). The economic costs of Alzheimer's disease. American Journal of Public Health, 77(9), 1169-1175. Institute of Medicine. (1993). 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Kane, R.L.; Garrard, J.; Buchanan, J.L.; Rosenfeld, A.; Skay, C.; McDermott, S. (1991). Improving Primary Care in Nursing Homes. Journal of the American Geriatrics Society, 39, 359-367. Kane, R.L.; Illston, L.H.; Miller, N.A. (1992). Qualitative analysis of the Program of All-inclusive Care for the Elderly (PACE). The Gerontologist, 32, 771-780. Kane, R.L.; Kane, R.A. (1994). Effects of the Clinton health reform on older persons and their families: A health care systems perspective. The Gerontologist, 34(5), 598-605. Kovar, M.G.; Harris, R. (1990). Who will care for the old? In C.A. Lindeman and M. McAthie (Eds.), Readings: Nursing Trends and Issues, Springhouse, PA: Springhouse Corporation. Lawton, M.P.; Brody, E.M.; Saperstein, A.R. (1989). A controlled study of respite service for caregivers of Alzheimer's patients. The Gerontologist, 29, 8-16. Leutz, W.N.; Greenlick, M.; Ervin, S.; Feldman, E.; Malone, J. (1991). Adding long-term care to Medicare: The social HMO experience. 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New York: Springer Publishing Company. Miller, J.A. (1991). Community-Based Long-Term Care: Innovative Models. Newbury Park: Sage Publications. Mittleman, M.S.; Ferris, S.H.; Shulman, E.; Steinberg, G.; Ambinder, A.; Mackell, J.A.; Cohen, J. (1995). A comprehensive support program: Effect on depression in spouse-caregivers of AD patients. The Gerontologist, 35, 792-802. Mundinger, M.O. (1994). Advanced-practice nursing--good medicine for physicians? New England Journal of Medicine, 330(3), 211-214. National Forum on Geriatric Education and Training White Papers. (1995). Rockville, MD: Geriatrics Initiatives Branch, Bureau of Health Professions, Health Resources and Services Administration. O'Shaunessy, M.A.; Price, M.A. (1987). Financing and delivery of long-term care services for the elderly. In C.J. Evashwick and L.J. Weiss (Eds.), Managing the Continuum of Care, (pp. 191-224). Rockville, MD: Aspen. Ory, M.G. (1995). Changing care settings: Special care unit research results. Paper presented at the Fourth National Alzheimer's Disease Education Conference, Chicago, IL. Ory, M.G.; Duncker, A.P. (1992). In-Home Care for Older People: Health and Supportive Services. Newbury Park, CA: Sage. Ostbye, T.; Crosse, E. (1994). Net economic costs of dementia in Canada. Canadian Medical Association Journal, 151(10), 1457-1464. Partners in Caregiving: The Dementia Services Program. (1995). Respite Report: Bowman Gray School of Medicine of Wake Forest University, Winston-Salem, NC, Special Issue: White House Conference on Aging Mini Conference. Rantz, M. (1993). National Health Care Reform: How will it affect long term care? Long-term Care Executive Network, 1, 10, April 1-5. Reifler, B.V. (1995). What I want if I get Alzheimer's disease. Archives of Family Medicine, 4(5), 395-396. Reuben, D.B.; Beck, J.C. (1994). Training physicians to care for older Americans: Progress, obstacles, and future directions: A background paper prepared for the Committee on Strengthening the Geriatric Content of Medical Education, Division of Health Care Services, Institute of Medicine, National Academy Press, Washington, DC. Rice, D.; Fox, P.; Max, W.; Webber, P.; Lindeman, D.; Hauck, W.; Segura, E. (1993). The economic burden of Alzheimer's disease care. Health Affairs, Summer, 164-176. Rovner, B.W.; Steele, C.D.; Shmuely, Y.; Folstein, M.F. (1996). A randomized trial of dementia care in nursing homes. Journal of the American Geriatric Society, 44, 7-13. Saravay, S.; Steinberg, M.; Weinschel, B.; Pollack, S.; Alovis, N. (1991). Psychological comorbidity and length of stay in the general hospital. American Journal of Psychiatry, 148(3), 324-329. Scanlon, W.J. (1988). A perspective on long-term care for the elderly. Health Care Financing Review, Annual Supplement, 7-15. Shaughnessy, P.W.; Kramer, A.M.; Hittle, D.F.; Steiner, J.F. (1995). Quality of care in teaching nursing homes: Findings and implications. Health Care Financing Review, 16(4), 55-83. Shaughnessy, P.W.; Schlenker, R.E.; Hittle, D.F. (1994). Home health care outcomes under capitated and fee-for-service payment. Health Care Financing Review, 16(1), 187-222. Sloane, P.D.; Lindeman, D.A.; Phillips, C.; Moritz, D.J.; Koch, G. (1995). Evaluating Alzheimer's special care units: Reviewing the evidence and identifying potential sources of study bias. The Gerontologist, 35(1), 103-111. Stolley, J.; Buckwalter, K.C.; Shannon, M.D. (1991). Caring for patients with Alzheimer's disease: Recommendations for nursing education. Journal of Gerontological Nursing, 17(6), 34-38. Tanner, F. (1994). Residential care is an attractive alternative in early stages of Alzheimer's disease. The Brown University Long Term Care Quality Letter, December 12, 5-6. U.S. Senate. (1988). Aging America: Trends and Projections: U.S. Department of Health and Human Services (DHHS). Vladeck, B.C.; Miller, N.A. (1994). The Medicare home health initiative. Health Care Financing Review, 16(1), 17-33. Volicer, L.; Collard, A.; Hurley, A.; Bishop, C.; Kern, D.; Karon, S. (1994). Impact of special care unit for patients with advanced Alzheimer's disease on patients' discomfort and costs. Journal of the American Geriatrics Society, 42(6), 597-603. Weissert, W.G.; Hedrick, S.C. (1994). Lessons learned from research on effects of community-based long-term care. Journal of the American Geriatrics Society, 42, 348-353. Welch, H.; Walsh, J.; Larson, E. (1992). The cost of institutional care in Alzheimer's Disease: Nursing home and hospital use in a prospective cohort. Journal of the American Geriatrics Society, 40(3), 221-224. Wilson, K.B. (1994). Assisted living: Model program may signify the future. Long Term Care Quality Letter, 6(15), 1-4. Department
of Health and Human Services For
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disease, please contact: This information is available courtesy of the NIH. It is in the public domain and can be downloaded, reproduced, or copied without permission. For more information go to http://www.alzheimers.org/pubs/pubs.html Advisory Panel on Alzheimer's Disease. Alzheimer's Disease and Related Dementias: Acute and Long-Term Care Services, 1996. NIH Pub. No. 96-4136. Washington, DC: Supt. of Docs., U.S. Govt. Print. Off., 1996. Advisory Panel on
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