The Role of Alzheimer Societies in the United States Ruth O’Hara and Bevin Powers

FEDERAL AGENCIES

As a federal agency of the United States Department of Health and Human Services agency, the Administration on Aging (AoA) has supported the Older Americans Act (OAA) of 1965 mandated programmes⁶. Also, the AoA awards research grants that support the needs of an aging population. Centers for Medicare and Medicaid Services also receive support from the AoA.

The AoA’s primary interest is the aging population and caregiv-ing, and it aims to invest in research, aging programmes and policy, including improvement of health care, aging in place, optimal aging and protecting the rights of older people. Some programmes are focused to provide home and community-based services such as home-delivered meals or nutrition services in congregate settings, or transportation, adult day care, legal assistance, health promotion pro-grammes and local ombudsman⁶. In addition, AoA provides funding for a range of support services for family caregivers.

The US National Institutes of Health National Institute on Aging (NIA) is the aging and health scientific based agency of the NIH. By an act of Congress in 1974, the NIA was authorized to lead aged-focused research, training and health information distribution⁷.The NIA is the leading federal agency supporting research on Alzheimer’s disease and other neurodegenerative disorders.

Through research, the NIA supports the well-being of older Amer-icans with a primary focus on the aging processes, age-related dis-eases and distinct needs of the aged. The NIA train, develop and support researchers in the field of aging, and place a funding prior-ity on those research endeavours that will likely help illuminate the mechanisms underlying the pathological features of AD.

Table 67.1 Alzheimer’s disease societies in the US

Table 67.1

In 1991, the Alzheimer’s Disease Cooperative Study (ADCS) was established by the National Institute on Aging’s (NIA) Neuroscience and Neuropsychology of Aging Program, and the University of Cal-ifornia San Diego⁸. Funded by the Federal Alzheimer’s Disease Prevention Initiative, the ADCS clinical trials focus on cognitive and behavioural treatments for AD in response to an increased need to development of drugs that might be useful for treating patients with AD. The ADCS employs a multi-site approach to conduct phar-maceuticals clinical trials to test new treatments that may improve cognition, decrease decline and delay the onset or progression of AD. The ADCS offers over 30 research studies nationally which are disseminated though the media and journal publications. A strength of this approach is that the investigators across the different sites comply a core set of identical assessment tools in order to achieve the maximum leverage for ongoing research projects.

The Alzheimer’s Disease Neuroimaging Initiative (ADNI) was built upon the resources of the ADCS. ADNI is funded through NIH, National Institute of Bioimaging and Bioengineering, the phar-maceutical industry and several foundations. The ADNI’s aim was to produce, conduct and report the results of a worldwide study designed to ‘define the rate of progress of mild cognitive impair-ment (MCI) and Alzheimer’s disease, to develop improved methods for clinical trials in this area, and to provide a database which will improve design of treatment trials’⁹. Using a national network of centers engaged in AD research, ADNI employs a common protocol to assess cognition, function, biomarkers and brain structure in the elderly with mild cognitive impairment, and AD across the multiple sites. This allows investigators to have sufficient numbers of subjects enrolled to be able to get a better scientific picture of the pathology, course and symptoms of this disorder.

The NIA funds the Alzheimer’s Disease Centers (ADCs) at major medical institutions across the United States^10,11. Research at ADCs focus on the basic mechanisms of AD, prevention, management of symptoms and improvement in patient care^10,11. Each ADC has a unique focus within a common goal shared by all centres, to enhance research on AD. ADC programmes offer collaborative clinical, research and community programmes, such as, diagnosis and medical management, information about the disease, services and resources, opportunities to participate in drug trials and clinical research projects. Additionally ADCs offer diagnostic and treatment services and research opportunities in underserved, rural and minority communities.

Created by NIA, the National Alzheimer’s Coordinating Center (NACC) was founded in 1999 to promote collaborative research and offer technical support throughout the 29 nationwide NIA-funded ADCs¹². The NACC encourages ADC collaborative research and data collection, and maintains a primary database of clinical and neuropathological research data collected from each ADC. From the NACC-maintained database, data analysis is conducted to generate descriptive and hypothesis within specific areas, and develop method-ological areas of study.

The National Cell Repository for Alzheimer’s Disease (NCRAD) was also founded and funded by the NIA in 1989¹³. The Reposi-tory serves as a national resource for clinical and genetic research. The Repository’s mission is to help identify the genes that lead to the development AD which can lead to more effective treatment and eventually prevention¹³. Programmes offered by the Repository are primarily research based and focused on families with a history of AD. This databank is instrumental in storing genetic data from Alzheimer’s patients and their families for future use and current scientific exploration.

The Alzheimer’s Disease Education and Referral Center (ADEAR) is the information centre and library on AD and is also operated under the NIA umbrella. It provides access to publications and audiovi-sual materials that can be retrieved online or through mail. ADEAR was created in 1990 to ‘compile, archive, and disseminate informa-tion concerning Alzheimer’s disease’ for health professionals and the community^10,11. This federally funded agency has the most updated, comprehensive information about the cause, treatment and diagnostic advancements of AD. As a community resource for information, the ADEAR services include free publications, referrals for services and AD specialized centres, literature and educational materials.

Within the Veteran Health Administration (VHA) system are 20 Geriatric Research, Education, and Clinical Centers (GRECC)¹⁴.In the mid-1970s, the VHA focused awareness on the aging veter-ans and their care¹⁴. The GRECCs were designed to advance and integrate research, education and clinical achievement in geriatrics and gerontology into the VHA health-care system. GRECCs have developed and expanded clinical models such as Geriatric Evalua-tion and Management (GEM) programmes, Palliative Care Programs for Late-Stage Dementia patients, education and training products¹⁴.

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