Resources for People with Alzheimer’s Disease and Their Caregivers

People with Alzheimer’s disease and their caregivers wage a difficult battle on many fronts day and night, experiencing strength and grace, but also tremendous emotional pain, frustration sorrow, and a deep sense of loss.

BY: Maureen Pratt

 

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Helpful organizations

The Alzheimer’s Association (www.alz.org) provides many services to people with the disease, including information, access to “Trial Match,” a database of clinical trials, and advocacy opportunities. Caregivers and people with the disease can also benefit from the local support groups organized by the Association, an online support community, and the Association’s Helpline: 1-800-272-3900, which is available 24 hours a day, 7 days a week.

The Alzheimer’s Foundation of America (www.alzfdn.org) was founded 10 years ago by Eric J. Hall, who now serves as the organization’s Founding President and CEO. The Foundation has 1600 member organizations across the United States and provides information and support, including a website for teens (www.afateens.org) so that they may learn more about the disease and ways that they can become involved in advocacy and raising awareness. The Foundation also sponsors the annual “National Candle Lighting Ceremony: Weekend of Prayer,” which will be held on November 9-11, 2012 (www.candlelighting.org). The Foundation’s telephone number is 800-438-4380.

The Family Caregiver Alliance (www.caregiver.org), based in San Francisco, was established to provide guidance and support specifically for people providing long-term care to individuals at home. The FCA maintains a comprehensive website that includes a Family Care Navigator, that links people to a specific state’s resources. The FCA telephone number is 800-445-8106.

The United States government has initiated a program to support research and other activity aimed at a variety of facets of Alzheimer‘s Disease. The National Institutes of Health, National Institute on Aging and other government and non-governmental entities are participating in this overall program. Information is available at www.alzheimers.gov, and at www.nia.nih.gov/alzheimers.

Often, hospitals and other medical institutions with memory care centers or geriatric programs may host workshops or conferences about dementia and related topics. Contact your local hospital to get on the mailing list for these and other programs of interest.

Globally, Alzheimer’s Disease International (www.alz.co.uk) draws together Alzheimer’s disease organizations (including the Alzheimer’s Association) and coordinates some activities, as well as sponsoring, with the World Health Organization, World Alzheimer’s Awareness Month (September of every year) and the annual World Alzheimer Report.

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