Alzheimer's disease remains "golden."

Much has been promised (or threatened), but little has changed for long-term care during the Clinton Administration's first term. Yes, there have been tighter OBRA regulations, tax deduction parity for long-term care insurance, increasing Medicaid waivers and a growing crackdown on Medicare fraud. But the rest has been a story of irreconcilable conflict and stagnation.

One Federal effort that has not been hampered by partisan debate, however, is support for the Alzheimer's disease (AD) research program of the National Institutes of Health. Dominated by the National Institute on Aging, which earmarks nearly half of its budget to Alzheimer's and its care, AD research has emerged as a stable industry in the midst of Federal government turmoil.

From 1993 through 1996, the AD research budget rose 7%, from $287 million to $309 million. The budget has become increasingly concentrated in four Institutes that form a working group on the disease: the National Institute on Aging, the National Institute of Neurological Disorders and Strokes, the National Institute of Mental Health, and the National Institute of Nursing Research, and the result has been a focus on four issues.

Perhaps the most urgent of these is the search for causes of the disease. To make a long story short, recent genetic research has indicated that early-onset and late-onset Alzheimer's may, in fact, be two related conditions with somewhat different origins.

The possibility of separate causes for early- and late-onset AD places a new priority on a second issue: techniques to diagnose the disease without performing expensive and dangerous brain biopsies. Electronic brain imaging and pupil dilation are among the screening techniques being studied.

The third issue is treatment. The nursing home community is extensively involved in the National Institute on Aging Alzheimer's Disease Cooperative Study Unit. Thirty-six sites are conducting trials of a variety of drugs and other treatments for delaying the progression of the disease and for reducing disruptive behaviors. This is complemented by the 10 research projects included in the five-year Special Care Unit Initiative, scheduled to report its findings later this year.

The fourth issue, and the smallest of the Federally-funded major research areas, is caregiver support; small but meaningful. According to Neil Buckholtz of the National Institute on Aging's neuroscience program, studies of caregivers may have the greatest impact on the costs associated with Alzheimer's disease, if only because it is usually the caregivers, rather than patients or neurological specialists, who make the management decisions. At the National Institute of Mental Health, for example, evaluation of a coping program to help caregiving spouses showed that it delayed nursing home placement by an average of six months. Similar research on professional caregiver stress reduction is supported by the National Institute on Aging and the National Institute of Nursing Research.

The scope and density of the achievements of Federally-funded AD research appear even more remarkable when one reflects that systematic study of Alzheimer's disease is younger than research on AIDS. Although the amalytic plaques that are characteristic of the disease were first identified by Dr. Alois Alzheimer in 1906, acceptance of AD as clinical disease rather than normal aging did not become widespread until the 1980s. According to Dr. Buckholtz, the relatively high levels of AD research funding began during the Bush Administration and have been maintained since, largely due to the lobbying efforts of the Alzheimer's Association. "It's a different situation with other diseases where there are multiple interest groups which sometimes don't cooperate with each other," he explained. "For Alzheimer's, there's really only the Association and it plays a large role in Congress."

The Chicago-based Alzheimer's Association has particularly benefited from the cooperation of Illinois Republican Congressman John Edward Porter, Chair of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education. With Porter's support, all of the National Institutes of Health are anticipating a healthy budget increase next year, with a slightly larger than average allocation slated for the National Institute on Aging.

One particular area of interest for the nursing home industry will be improving the channels of communication between the professional care providers and the AD research community. Until now, the Alzheimer's Disease Education and Referral (ADEAR) Center has been seen as a major clearinghouse for information and publications on the disease. However, most of the Center's efforts are targeted to patients and family members. As AD research develops more policy and financial implications for the nursing home industry, other means of communicating with professional long-term care providers may be needed.

For now, though, ADEAR is "where it's at." Call ADEAR at 1-800-438-4380 or Fax [phone].