è§b
Dementia
A. Alzheimer’s Type
- ºô¯¸«Ø¸mªÌ: Alzheimer Europe.
- Multilingual site with annotated reviews of other sites.
- FAQs for the nonprofessional.
- Had not been updated in over a year at the time of our visit.
- ºô¯¸«Ø¸mªÌ: Washington University (St. Louis) Alzheimer Disease Research Center.
- Companion site to a mailing list for anyone interested in Alzheimer’s Disease.
- Archives of the mailing list going back to 1994.
- Well-organized links, with brief descriptions, to other Web sites dealing with aging and dementia.
- ºô¯¸«Ø¸mªÌ: Alzheimer Research Forum.
- Up-to-date information about AD research.
- Different entry points for physicians, researchers, and others. The latter leads to annotated links to pages within this and other sites.
- ºô¯¸«Ø¸mªÌ: Alzheimer Society of Canada, which has a mirror site in French.
- Nice graphics with links (some annotated) to other Web sites.
- FAQs about Alzheimer’s Disease and research on its causes.
- Contains links to personal stories of Alzheimer’s Disease.
- Pages useful to caretakers of people with Alzheimer’s.
- Link forwards to http://home.mira.net/~dhs
- ºô¯¸«Ø¸mªÌ: David Small.
- Focuses on Alzheimer-related research.
- Automatically updates information on Alzheimer's research that is added weekly to the MEDLINE database.
- ºô¯¸«Ø¸mªÌ: Alzheimer’s Association.
- FAQs on Alzheimer’s for caregivers and professionals.
- Selection of links to other Alzheimer’s Web sites.
- ºô¯¸«Ø¸mªÌ: PlanetRx.
- A well-organized site with fact sheets about symptoms, diagnosis, and treatment.
- Current news stories on Alzheimer’s research.
- Links to other Web sites are described and reviewed in detail.
Alzheimer’s Disease Education and Referral Center
- ºô¯¸«Ø¸mªÌ: Alzheimer’s Disease Education and Referral Center of the National Institutes of Health.
- Link to a database of articles on Alzheimer’s.
- Lists Alzheimer’s Centers in various states, all funded by the National Institute on Aging.
- Database of clinical trials.
Alzheimer’s Disease International
- ºô¯¸«Ø¸mªÌ: Alzheimer’s Disease International, an umbrella organization of Alzheimer’s associations.
- This hierarchically constructed Web site contains much information that is several clicks away from the home page.
- Annotated links to Web sites of Alzheimer’s associations and other information resources around the world.
- Information for caregivers.
- Describes a research program known as ?0/66 Group.?
B. Vascular Dementia
- ºô¯¸«Ø¸mªÌ: Alzheimer’s Association NSW (Australia).
- FAQs on vascular dementia.
- This site is not frequently updated.
C. Dementia Due to Other Medical Conditions
1. HIV
See also the AIDS Web sites listed in chapter 4, section E.
Psychosocial Interventions in Persons with HIV-Associated Neuropsychiatric Compromise
- ºô¯¸«Ø¸mªÌ: Body Health Resources Corporation.
- A 1998 book chapter by Stephen L. Buckingham and Michael Shernoff.
2. Head Trauma
- ºô¯¸«Ø¸mªÌ: Brain Injury Association USA, a support organization for brain-injured people and their families.
- Extensive resource of online information, both technical and general, about brain injury and rehabilitation.
- Links to state associations.
- Nice graphics.
- Many links to other Web sites for professionals and the general public, often with brief descriptions.
National Resource Center for Traumatic Brain Injury
- ºô¯¸«Ø¸mªÌ: Medical College of Virginia, Virginia Commonwealth University
- Brief FAQs and links (with brief descriptions) to relevant Web sites.
3. Parkinson’s Disease
National Parkinson Foundation, Inc.
- ºô¯¸«Ø¸mªÌ: National Parkinson Foundation, Inc.
- Surgical options.
- Features self-assessment questionnaires for Parkinson patients to track the progress of the disease; the Web site notes that these instruments have not been validated.
- Lists surgical centers for Parkinson, including contact information and hyperlinks.
- Has a “Caregiver’s Site.?
Parkinson Foundation of Canada
- ºô¯¸«Ø¸mªÌ: Parkinson Foundation of Canada.
- Brief fact sheets about the disease and basic care.
- Links to regional Canadian associations and lists their fundraising events.
Parkinson’s Disease Foundation, Inc.
- ºô¯¸«Ø¸mªÌ: Parkinson’s Disease Foundation, Inc., a nonprofit organization that funds research grants.
- Describes the Foundation’s work.
4. Huntington’s Disease
Caring for People with Huntington’s Disease
- ºô¯¸«Ø¸mªÌ: Department of Neurology, University of Kansas Medical Center; Huntington’s Disease Support Groups.
- Detailed FAQs about Huntington’s Disease and specific issues associated with caring for them.
- Links to relevant Web sites.
Huntington’s Disease Information
- ºô¯¸«Ø¸mªÌ: Renette Davis, a librarian at University of Chicago.
- A graphically plain site with many valuable links to information about HD.
- Click on “Electronic Resources on Huntington’s Disease?for a long single page of links for the professional and the general public.
- Lists fictional treatments of HD, many with capsule descriptions.
Huntington’s Disease Society of America
- ºô¯¸«Ø¸mªÌ: Huntington’s Disease Society of America, which ºô¯¸«Ø¸mªÌs research and functions as a supportive resource.
- Abstracts of recent research.
- Lists genetic testing centers, long-term care facilities, and self-help groups.
- Sells videotapes about caring for people with HD.
- ºô¯¸«Ø¸mªÌ: Huntington Society of Canada, an organization of volunteers and professionals that ºô¯¸«Ø¸mªÌs research on HD.
- Lists meetings and publications of the Society.
- FAQs about HD.
- Has mirror sites in English and French.
5. Pick’s Disease
Pick’s Disease Support Group Online
- ºô¯¸«Ø¸mªÌ: Pick’s Disease Support Group, which serves caregivers in Europe and North America.
- Archive of newsletters and message board posts.
- Personal narratives of caregivers.
- Links to sites on Pick’s and Alzheimer’s Diseases.
- ºô¯¸«Ø¸mªÌ: Bob Hoffmann.
- Links to fact sheets, personal narratives, and support groups.
6. Creutzfeldt-Jacob Disease
Creutzfeldt-Jacob Disease Foundation, Inc.
- ºô¯¸«Ø¸mªÌ: Creutzfeldt-Jacob Disease Foundation, Inc.
- FAQs about the disease.
- Lists recent headlines concerning the disease, but without links to the articles themselves.
- Lengthy article about different theories concerning the disease agent.
- Links to upcoming conferences.
The UK Creuztfeldt-Jacob Disease Surveillance Unit
- ºô¯¸«Ø¸mªÌ: Western General Hospital (Edinburgh).
- Describes research being done by this facility, with a bibliography of their print publications. This site is not frequently updated.
Official Mad Cow Disease Home page
- ºô¯¸«Ø¸mªÌ: Sperling Biomedical Foundation.
- A collection of articles on this disease, with summaries of the scientific literature. The Webmaster’s opinions and newspaper articles are liberally interspersed.
- The Web site lists brief titles for many articles on this site; a search engine would make it much easier to locate desired information.