(HBO) The following list of caregiver resources is provided by the HBO Alzheimer’s Project.
Alzheimer’s Disease Education and Referral (ADEAR) Center National Institute on Aging
www.nia.nih.gov/Alzheimers
P.O. Box 8250, Silver Spring, MD 20907-8250
1-800-438-4380 (toll-free)
This service of the National Institute on Aging (NIA) offers information and publications on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to Alzheimer’s disease. Staff members answer telephones, emails, and written requests, and make referrals to local and national resources. The ADEAR website offers free, online publications in English and Spanish; email alerts, and online Connections newsletter registration; an AD clinical trials database; the AD Library database; and a listing of the NIA’s Alzheimer’s Disease research centers around the United States and more.
Alzheimer’s Association
225 North Michigan Avenue, Suite 1700
Chicago, IL 60601-7633
1-800-272-3900 (toll-free)
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support, and research. The Alzheimer’s Association delivers education, support, and services for people diagnosed with Alzheimer’s, their families, caregivers, healthcare professionals, and the general public. Programs delivered at the nationwide level include a 24-hour helpline for information and referrals, online education and assistance at www.alz.org, housing- and care-finder services, an identification program designed to address wandering and return people home safely, and nationwide campaigns about the warning signs of Alzheimer’s, risk reduction, and the effects of Alzheimer’s on the brain. A network of local Chapters sponsors support groups and educational programs, and offers referrals to local resources and services. A wide variety of online and print publications and videos are also available. The Association is the leading non-profit funder of Alzheimer research.
Information and Support Resources
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AARP
601 E Street NW
Washington, DC 20049
1-888-687-2277
With a membership of 40 million, AARP is the largest nonprofit, nonpartisan membership organization that helps people age 50 and older to improve the quality of their lives. AARP’s mission is to enhance the quality of life for all as we age, leading positive social change and delivering value to members through information, advocacy, and service. The website provides information about Alzheimer’s disease, caregiving, driver safety, checklists for choosing an assisted living center or nursing home, and many other topics of interest to older people and their families.
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Administration on Aging Alzheimer’s Resource Room
www.aoa.gov/AoARoot/Index.aspx
U.S. Department of Health and Human Services
The mission of the Administration on Aging (AoA) is to help elderly individuals maintain their dignity and independence in their homes and communities through comprehensive, coordinated, and cost effective systems of long-term care, and livable communities across the U.S.
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The Dana Foundation
212-223-4040
The Dana Foundation is a private philanthropic organization with particular interests in neuroscience, immunology, and arts education. It supports the Dana Alliance, a nonprofit organization of more than 280 leading neuroscientists committed to advancing public awareness about the progress and benefits of brain research, and the Dana Press, which publishes books and, on dana.org, free online and print resources on the brain, immunology, and arts education.
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Medline Plus
U.S. National Library of Medicine
U.S. Department of Health and Human Services
MedlinePlus brings together the resources of the world’s largest medical library, The National Library of Medicine, in a format designed for the general public. There are directories, a medical encyclopedia and a medical dictionary, easy-to-understand tutorials on common conditions, tests, and treatments, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to clinical trials.
Caregiving Support and Services
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Children of Aging Parents
800-227-7294 (toll-free)
This nonprofit organization provides information and referrals for nursing homes, retirement communities, elder-law attorneys, adult day-care centers, insurance providers, respite care, assisted living centers, support groups, and State and county agencies. It also offers fact sheets, a newsletter, and conferences and workshops.
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Eldercare Locator
www.eldercare.gov
1-800-677-1116 (toll-free)
The Eldercare Locator is a nationwide service helping older adults and their caregivers locate local support and resources. It is a public service of the Administration on Aging, U.S. Department of Health and Human Services.
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Family Caregiver Alliance
1-800-445-8106 (toll-free)
The Family Caregiver Alliance is a nonprofit organization that offers support services and information for people caring for adults with AD, stroke, traumatic brain injuries, and other cognitive disorders.
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Medicare.gov/Caregiver Centers for Medicare and Medicaid Services (CMS)
www.medicare.gov/caregivers
U.S. Department of Health and Human Services
This website, designed to help caregivers navigate Medicare, addresses topics such as how to enroll, how to file a claim, help with billing, comparing facilities, getting in-home services, ways to pay for nursing homes, and planning for long-term care, getting legal help and a caregiving exchange.
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National Academy of Elder Law Attorneys (NAELA)
703-942-5711
The National Academy of Elder Law Attorneys is a nonprofit association that assists lawyers, bar organizations, and others who work with older clients and their families. The Academy provides a resource of information, education, networking, and assistance to those who deal with the many specialized issues involved with legal services to seniors and people with special needs.
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National Family Caregivers Association
1-800-896-3650 (toll-free)
The National Family Caregivers Association helps educate and support people who care for loved ones with chronic illness, disability, or the frailties of old age. The Association offers an online library of information and educational materials, workshops, and other resources.
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NCCNHR: The National Consumer Voice for Quality Long-Term Care
NCCNHR is a nonprofit, 501(c)(3) organization founded in 1975 to protect the rights, safety, and dignity of America’s long-term care residents. In 2007, the organization changed its name from the National Citizen’s Coalition for Nursing Home Reform (NCCNHR) to reflect its increasing involvement in assisted living, board and care facilities, and home and community based alternatives. For over thirty years, NCCNHR has worked with its members to carry out its mission to inform, educate and empower consumers; support citizen groups and ombudsman programs to be effective advocates for residents; promote best practices in care delivery and the enforcement of quality standards.
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Caring Connections
www.caringinfo.org
1-800-658-8898 (toll-free)
Caring Connections is a program of the National Hospice and Palliative Care Organization, a nonprofit organization that works to enhance the quality of life for people who are terminally ill. It provides information, resources, and referrals to local hospice services, and offers publications and online resources.
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Well Spouse Association
1-800-838-0879 (toll-free)
The nonprofit Well Spouse Association gives support to spouses and partners of people who are chronically ill and/or disabled. It offers support groups and a newsletter.
Research and Clinical Trials
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Alzheimer’s Disease Cooperative Study
858-622-5880
The Alzheimer’s Disease Cooperative Study (ADCS) is a cooperative agreement between NIA and the University of California, San Diego, to advance research in the development of drugs to treat AD. The ADCS is a consortium of medical research centers and clinics working to develop clinical trials of medicines to treat behavioral symptoms of AD, improve cognition, slow the rate of decline caused by AD, delay the onset of AD, or prevent the disease altogether. The ADCS also develops new and more reliable ways to evaluate patients enrolled in clinical trials.
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Alzheimer’s Drug Discovery Foundation (ADDF)
The ADDF is an affiliated public charity of the Institute for the Study of Aging, funding drug discovery research for Alzheimer’s disease, related dementias, and cognitive aging.
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Alzheimer Research Forum
The Alzheimer Research Forum is an online scientific community dedicated to understanding Alzheimer’s disease and related disorders. Established as an independent not-for-profit, the website reports on the latest scientific findings, creates and maintains public databases of essential research data and reagents, and produces forums to promote debate, speed the dissemination of new ideas, and break down barriers across the numerous disciplines that can contribute to the global effort to cure Alzheimer disease.
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American Health Assistance Foundation
1-800-437-AHAF
The American Health Assistance Foundation (AHAF) is a nonprofit organization that funds research seeking cures for Alzheimer’s disease, age-related macular degeneration and glaucoma, and provides the public with information about risk factors, the latest research, treatments, risk reduction through healthy lifestyles, and ways to cope with the effects of these diseases.
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ClinicalTrials.gov
ClinicalTrials.gov is an online registry of federally and privately supported clinical trials and studies conducted in the United States and around the world. Users can search for clinical trials and find information about each trial’s purpose, who may participate, locations, and phone numbers for more details.
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National Cell Repository for Alzheimer’s Disease (NCRAD)
1-800-526-2839 (toll-free)
NCRAD is a national NIA-funded resource where clinical information and genetic material (DNA) can be stored from individuals with Alzheimer’s disease as well as from individuals without any symptoms of memory loss or dementia. NCRAD is part of a new effort to help researchers identify the genes that play a role in the development of Alzheimer’s disease. Contact NCRAD for information about ongoing AD genetics studies.
Professional Organizations
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American Academy of Neurology
www.aan.com / www.TheBrainMatters.org
1-800-879-1960
The American Academy of Neurology (AAN), a professional association of more than 21,000 neurologists and neuroscience professionals, is dedicated to providing the best possible care for patients with disorders of the brain and nervous system, such as Alzheimer’s disease. In addition, the AAN Foundation raises money to fund vital research to help prevent, treat, and cure hundreds of neurologic disorders. The AAN Foundation also produces educational materials, including TheBrainMatters.org, a trusted one-stop resource to help those with neurologic disorders and their loved ones better understand common disorders of the brain, including Alzheimer’s disease. The AAN also publishes educational materials such as: the free patient magazine Neurology Now®, updates from its medical journal Neurology®, and AAN Guidelines that summarize research on diagnosing and providing treatment options for people with Alzheimer’s disease and their families.
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Society for Neuroscience
202-962-4000
The Society for Neuroscience (SfN) is a nonprofit membership organization of scientists and physicians who study the brain and nervous system. The Society also promotes public information and general education about the nature of scientific discoveries and the results and implications of the latest neuroscience research, and produces a variety of publications, including a monthly newsletter and a primer on the brain and nervous system.
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