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Innovations in End-of-Life Care
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| Source Organization & Home Page | Specific Document or Tool |
| The Alzheimer's Association http://www.alz.org/ A U.S. based, non-profit organization devoted to education, advocacy and research on behalf of patients suffering from Alzheimer's disease and their families. |
A rich site, it includes a directory of more than 200 chapters across
the United States and sections on the basic facts of the disease, caregiving issues, medical issues, research
and news updates. Each section includes information directed to people suffering from Alzheimer's and their
families as well as to health care professionals. A brief review of end-of-life issues is available at
http://www.alz.org/taking /rtlife.htm and an extensive glossary of frequently used terms is at http://www.alz.org/facts/rtterms.htm |
| Alzheimer's Association NSW: Sharing Dementia Care http://www.alznsw.asn.au/ default.htm This is an Australian non-profit community organization that provides support services to people with dementia and their families who live in New South Wales. Some of the 'Helpnotes' are available in Chinese, Greek, Spanish and Polish. |
Listing of many useful written resources including 'Helpnotes' for people diagnosed with
dementia as well as for their caregivers at http://www.alznsw.asn.au/library/ libtoc.htm One noteworthy example is 'Caring Tips from the Perspective of a Person with Dementia' by Christine Boden available at http://www.alznsw.asn.au/library/tips.htm Extensive international and Australian links at http://www.alznsw.asn.au/links.htm. |
| Alzheimer's.Com http://www.alzheimers.com/ |
Offers a detailed overview of Alzheimer's management, treatment, risk factors, and prevention. This site also includes other site reviews, resources, and links. A community message board allows patients and family to interact with others affected by this disease. |
| Alzheimer's Disease Education and Referral Center (ADEAR) http://www.alzheimers.org/ The ADEAR Center is a service of the National Institute on Aging (NIA), one of the National Institutes of Health under the U.S. Department of Health and Human Services. |
U.S. Federal Government Agencies: Resources on Dementia is at http://www.alzheimers.org/federal.html
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| Alzheimer Europe http://www.alzheimer-europe.org/ Information is available in English, French, Greek, Italian, Spanish, Dutch, Portuguese, Swedish, Danish and Finnish at this site sponsored by Alzheimer Europe, a Non-Governmental Organization that aims to raise awareness of all forms of dementia. |
This site has many sets of guidelines for pursuing research but does not include many actual products.
Lists and has links to information about research projects co-financed by the European Commission in 1997
at http://www.alzheimer-europe.org/ ec97.html Also includes a specific set of tools for setting up an Alzheimer's telephone hotline at http://www.alzheimer-europe.org/help_manual.html |
| Coping: Caregivers Helping Other Caregivers http://www.isl.net/~hoffcomp/ This site is produced and maintained by the Men's Alzheimer Support Group of Rochester, Minnesota. |
Provides extensive information on current medical news and information for patients or friends/relatives of patients diagnosed with Alzheimer's Disease and other dementias. Favorite reading material and references are at http://www.isl.net/~hoffcomp/reading.html |
| Elder Books: The Alzheimer's Bookshelf http://www.elderbooks.com /pages/about.htm Elder Books is a book publisher that specializes in books related to Alzheimer's disease. |
The bookshelf page lists books and links to
short descriptions and ordering information:
http://www.elderbooks.com/ pages/bookshelf.htm |
| Mental Health Net http://mentalhelp.net/ |
The site provides an extensive list of annotated links to web resources that focus on Alzheimer's Disease, dementia and geriatric resources at http://mentalhelp.net/guide/aging.htm |
| Reach: Resources For Enhancing Alzheimer's Caregiver Health http://www.edc.gsph.pitt.edu /REACH/ REACH is an initiative started in 1995 by the National Institutes of Health. Its primary purpose is to develop and test new ways to help families manage the daily activities and the stresses of caring for people with Alzheimer's disease or related disorders. |
Progress reports on research projects supported by the National Institute on Aging
and the National Institute of Nursing Research are at
http://www.edc.gsph.pitt.edu/reach /progress.html and a bibliography of REACH related journal publications is at http://www.edc.gsph.pitt.edu/REACH /biblio.html. |
| Time Slips http://www.timeslips.org/ Time Slips is an interactive, intergenerational storytelling project created by a team of artists working with caregivers and people with Alzheimer's disease. |
This site describes storytelling workshops that tap the creative expression of people with Alzheimer's and other dementias. Includes sample stories by participants. Has links to aging and arts related sites. |
| Undying Love http://www.rockymountain news.com/undyinglove/ |
Patrick Davison has created a photo essay and narrative account of his mother's life and experience with Alzheimer's disease. |
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| Last Updated: July 17th, 2000 |
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