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Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Vol. 1, No. 4, 1999
Resources and Tools

I. Tools and Websites Related to this Issue's Contributors:

Film produced by the U.S. Department of Veterans Affairs:
Alzheimer's Disease: Natural Feeding Techniques
A 14-minute video 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.

For more information contact:
Terra Nova Films
9848 S. Winchester Avenue
Chicago, IL 60643
telephone: (800) 779-8491
fax: (773) 881-3368
or visit their website at http://www.terranova.org

[Return to Featured Innovation]

VA Faculty Leaders Project for improved care at the end of life
http://www.va.gov/oaa/flp/
The VA Faculty Leaders Project is a two-year initiative of the Office of
Academic Affiliations, Department of Veterans Affairs (VA), to develop benchmark curricula for end-of-life care and palliative care as well as strategies for their implementation, for training resident physicians.  This project is supported by the Robert Wood Johnson Foundation.

Dementia Services Development Centre
http://www.stir.ac.uk/dsdc
The Dementia Services Development Centre is part of the Applied Social Science Department, Faculty of Human Sciences at the University of Stirling, Stirling, Scotland. Professor Mary Marshall, interviewed in this issue's International Perspectives Department directs this centre. Its purpose is to assist in the development and improvement of services for people with dementia and their carers. This website has extensive resources and tools including Specialist Reading Lists for people wanting to lead training sessions with staff at http://www.stir.ac.uk/dsdc/readlist.htm. You can also test your dementia knowledge at this site and have your quiz results scored immediately at http://www.stir.ac.uk/dsdc/QQuest.html.

[Return to Featured Innovation]

[Return to International Perspective]

EACH: The European Alzheimer Clearing House  http://www.each.be/
The European Alzheimer Clearing House aims to bring together initiatives in dementia care in the European Union in order to make better use of existing information and expertise and to put forward and select examples of good practice  in the field of care for patients with Alzheimer Disease and related disorders.  This website is financed by the European Community and offers a search engine and a wide variety of substantive information on Alzheimer's disease and related dementias of interest to health care professionals and researchers.   This site offers many reports that can be downloaded directly including information on "Good Practice" at http://www.each.be/introduction/WP2/GoodPractices.htm

[Return to International Perspective]

II.  Other Web Resources

The following brief list of resources and tools includes some targeted to patients with dementia and their families and others to health care professionals.

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
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.

This archived issue:
Archive Issue Home | Editorial | Personal Reflections | Featured Innovation | International Perspectives | Read More | Resources & Tools | On-line Discussion


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