Alzheimer's Research and the Federal Government

Alzheimer's disease (AD) is the most common form of dementia (a brain disorder that seriously affects a person's ability to carry out daily activities) among older people. It involves the parts of the brain that control thought, memory, and language. Every day scientists learn more, but right now the causes of AD are still unknown, and there is no cure.

This webguide covers federal government agencies, bureaus and institutes that support Alzheimer's research and education, programs that care for persons with the disease, and statistics and data on the disease.


Federal Programs That Support Alzheimer's Research

National Institute on Aging
The National Institute on Aging (NIA), one of the 25 institutes and centers of the National Institutes of Health, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. In 1974, Congress granted authority to form the National Institute on Aging to provide leadership in aging research, training, health information dissemination, and other programs relevant to aging and older people. Subsequent amendments to this legislation designated the NIA as the primary federal agency on Alzheimer’s disease research.

ADEAR
The U.S. Congress created the Alzheimer's Disease Education and Referral (ADEAR) Center in 1990 to "compile, archive, and disseminate information concerning Alzheimer's disease" for health professionals, people with AD and their families, and the public.

Veteran's Affairs MIRECC
The Department of Veterans Affairs (VA) has developed a program of Mental Illness Research, Education and Clinical Center (MIRECC).  MIRECCs are designed to bring state-of-the-art research, educational and clinical activities to select VA regional areas or Networks.  The Dementia Clinical Core focuses first on patients with Post-traumatic Stress Disorder (PTSD) and behavioral problems associated with Alzheimer's Disease and related dementias and will investigate the practical usefulness of new pharmacological treatments for veterans with dementia.


Alzheimer's Disease Research Centers

The National Institute on Aging currently funds 29 Alzheimer’s Disease Centers (ADCs) and three Affiliate Centers at major medical institutions across the U.S.  Researchers at NIA-funded Alzheimer's Disease Centers are working to translate research advances into improved diagnosis and care for Alzheimer’s disease (AD) patients while, at the same time, focusing on the program’s long-term goal -- finding a way to cure and possibly prevent AD.

Find an Alzheimer's Disease Center (ADC):

Alabama (1) Arizona (1) Arkansas (1)
California - Stanford University California - University of California, Davis California - University of California, Irvine
California - University of California, 
Los Angeles
California - University of California, 
San Diego
California - University of Southern California
Georgia (1) Emory University* 
(Affiliate Center)
Illinois - Northwestern University Illinois - Rush-Presbyterian-St. Luke's Medical Center
Indiana (1) Kentucky (1) Maryland (1)
Massachusetts - Boston University Massachusetts - Harvard Medical School/Massachusetts General Hospital Michigan (1)
Minnesota (1) Missouri (1) New York - Columbia University
New York - Mount Sinai School of Medicine/Bronx VA Medical Center New York University New York - University of Rochester* (Affiliate Center)
North Carolina (1) Ohio (1) Oregon (1)
Pennsylvania - University of Pennsylvania Pennsylvania - University of Pittsburg Texas - Baylor College of Medicine* (Affiliate Center)
University of Texas Washington (1) National Alzheimer's Coordinating Center (NACC)


Literature Search

CHID
Search the ADEAR Center's collection of more than 7,500 materials related to Alzheimer's disease (abstracts of books, journal articles, brochures, fact sheets, audiovisuals, and other health promotion and education materials that may not be indexed elsewhere).

NIH SeniorHealth
Online learning site developed by the National Institute on Aging and the National Library of Medicine to make aging-related health information easily accessible for adults 60 and older, as well as their family members and friends. Topics include: Alzheimer's disease, caring for someone with Alzheimer's, and exercise for older adults. This is a talking web site. Click the "Turn Speech On" button at the top of the page to hear the text read aloud. On any page, click the content to hear the information.

HSTAT
Health Services Technology Assessment Texts (HSTAT) is a free, Web-based resource of full-text documents that provide health information and support health care decision making. HSTAT's audience includes health care providers, health service researchers, policy makers, payers, consumers and the information professionals who serve these groups.  HSTAT also provides links to external databases, including the National Library of Medicine's (NLM) PubMed®, the Centers for Disease Control and Prevention (CDC) Prevention Guidelines Database, and the National Guideline Clearinghouse.

NICHSR
The 1993 NIH Revitalization Act created a National Information Center on Health Services Research and Health Care Technology (NICHSR) at the National Library of Medicine to improve "..the collection, storage, analysis, retrieval, and dissemination of information on health services research, clinical practice guidelines, and on health care technology, including the assessment of such technology."  The overall goals of the NICHSR are: to make the results of health services research, including practice guidelines and technology assessments, readily available to health practitioners, health care administrators, health policy makers, payers, and the information professionals who serve these groups; to improve access to data and information needed by the creators of health services research; and to contribute to the information infrastructure needed to foster patient record systems that can produce useful health services research data as a by-product of providing health care.
 


Other Federal Government Resources

PubMed
PubMed, a service of the National Library of Medicine, includes over 14 million citations for biomedical articles back to the 1950's. These citations are from MEDLINE and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.

Terra Nova Films
Terra Nova Films produces and distributes videos dealing exclusively with aging related issues.  They have over 50 videos on all aspects of Alzheimer's Disease, including Alzheimer's Disease: Natural Feeding Techniques.  This is a 14-minute video produced by the U.S. Department of Veterans Affairs that demonstrates how caregiving staff manage feeding difficulties for patients in the late stage of Alzheimer's. Includes three case studies that show how oral feeding techniques as opposed to tube feeding, can decrease infection, increase patient comfort and improve overall quality of life for the patient.

healthfinder®
healthfinder® is an award-winning Federal Web site, developed by the U.S. Department of Health and Human Services together with other Federal agencies.  Since 1997, healthfinder® has been recognized as a key resource for finding the best government and nonprofit health and human services information on the Internet.  healthfinder® links to carefully selected information and Web sites from over 1,700 health-related organizations.

The Department of Health and Human Services
The Department of Health and Human Services (HHS) is the United States government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.

DALTCP
The Office of Disability, Aging and Long-Term Care Policy (DALTCP) is charged with developing, analyzing, evaluating and coordinating HHS policies and programs which support the independence, productivity, health and long-term care needs of children, working age adults and older persons with disabilities.

Medicare & Medicaid
The Centers for Medicare & Medicaid Services (CMS) has clarified the coverage for Alzheimer’s disease to make it clear about how Medicare processes claims for patients with Alzheimer’s disease.  Medicare contractors can no longer automatically deny claims based solely on the Alzheimer’s diagnosis. This does not guarantee that all claims for Alzheimer’s patients will be paid. Instead, Medicare contractors review these claims based on the beneficiary’s overall medical condition. This means that
Medicare may pay for speech, occupational and rehabilitation therapies for people with Alzheimer’s, including mental health services.

Bureau of Primary Health Care
The mission of this federal agency is to increase access to comprehensive primary health care for underserved persons age 50+ using innovative outreach enrollment strategies, by increasing reimbursement, and raising the quality of geriatric care, including persons with Alzheimer's Disease, in community-based sites supported by the Bureau of Primary Health Care (BPHC).  The BPHC publishes The Geriatric Directory, which offers pathways to a majority of geriatric information resources to assist providers of primary health care on issues related to caring for and serving citizens 65 years and older.  This publication is in PDF format.


This webguide created on November 30, 2003 by Debbie Whittemore.


CLIS 734
Fall 2003
University of South Carolina