SPC Links Page
Scientific and medical information
Provides a good general description of the disease, its diagnosis and treatment, and provides guidance for family members and caregivers.
Outlines the diagnostic process and includes examples of standard tests.
A crown jewel of the Internet, Pub Med is a medical literature database maintained by the National Library of Medicine, with citations and abstracts from thousands of peer-reviewed scientific and medical journals. Free to the public.
Maintained by the National Library of Medicine, this is a one-stop index of news, articles on care giving, glossary, support organizations and many other useful resources.
A highly Unsatisfying situation. There is no single web resource that collects information on all ongoing clinical trials and their locations. One has to piece together information from multiple web sites.
A joint project of the FDA and National Institute on Aging, this searchable database includes at present only those clinical trials that are funded by the NIH or by foundations.
Information on clinical trials sites, but not comprehensive, and contains only sketchy information about the drugs in the clinical trials.
This company matches patients to clinical trials via a secure web interface. Again, the list of trials is not yet comprehensive, and there is little information available on the site about specific compounds.
Advice and Resources
This article by Paul Raia of the Alzheimer’s Association Massachusetts chapter provides a wealth of useful advice for family members and caregivers of people with early-stage Alzheimer’s.
A practical guide based on a series of in-depth interviews that examined how 45 caregivers and nine persons with dementia coped with the problem of balancing independence and safety. Co-developed by M.I.T.’s AgeLab and Hartford Financial Services Group, a leading provider of auto insurance for drivers over 50.
This article from the National Center on Physical Activity and Disability at the University of Illinois, Chicago, describes results of studies showing cognitive and behavioral improvement in Alzheimer patients who follow an exercise regimen. The site offers practical tips for incorporation physical exercise into a patient and caregiver’s routine.
A web site devoted to issues of designing safe homes and environments for Alzheimer patients. Ageless Design, a Florida-based consulting firm, maintains it. Includes links the Alzheimer’s Store, an online shopping center featuring products related to care of patients with dementia.
Information, education and support for people caring for the elderly, especially those coping with Alzheimer’s Disease and related dementias. Features an extensive message board:
This is an enormous message board for a multitude of neurological disorders. The quality depends largely on the individuals who post messages there. Some, such as the ALS group. Are very actively involved in investigating therapeutics.
The Alzheimer Research Forum
Mission: To create an online scientific community dedicated to developing treatments and preventions for Alzheimer’s disease. From its inception, we felt it was important for the Forum to be
Diverse and inclusive
The initial focus was to create a web-based “metajournal” that compiles weekly lists of newly published articles and ties them into an information network of news, commentary, discussion forums and data directories. For Example:
Weekly updated list of citations with commentary by the research community.
Our own independently reported news on important developments in Alzheimer research and related fields of applied and basic science.
Forums on hot scientific topics and controversies. We use both live chat rooms and email postings, to accommodate as many participants as possible.
All reported mutations in genes that cause familial Alzheimer’s disease and front temporal dementia with Parkinson’s (FTDP-17).
Although the intended audience is Alzheimer researchers, the site has always been open to the public at large. We want information to empower patients and caregivers, and so have developed some services with a more diverse readership in mind:
A guide for the public on basic facts, diagnosis, treatment and care giving
A searchable database of drugs in clinical trials (Phase II and beyond) for Alzheimer therapy.
What’s missing: information on trial locations.
Experienced practitioners answer questions about diagnosis and treatment. We will be adding a Product Review section to provide facts and independent evaluations of commercial diagnostic products.
A place where experts and lay people alike can post anecdotal observations and speculations. Who knows where the next good idea might come from?
The Forum collaborates with ElderCare online to maintain a chat. Chats range from support groups and caregiver advice to highly technical scientific discussions. Our philosophy is that having a shared resource helps bring together communities that need to be more informed about one another.
Patients enrolled in two different managed care plans in San Francisco have a unique opportunity to participate in a partnership to improve the care of persons with memory loss and their caregivers. Through the project, the Alzheimer’s Association and managed care plans work together to address the special needs of these patients and their family caregivers with: 1) earlier identification of dementia; 2) improved continuity of patient care; 3) family caregiver education and support; and 4) care across the entire course of the disease.
Local partners: Alzheimer’s Association; Institute on Aging; Kaiser Permanente, San Francisco; and a group of Brown & Toland physicians at California Pacific Medical Center (CPMC). To inquire/participate: San Francisco Brown & Toland members contact Susan Roth, Institute on Aging (415-750-4180, ext 180) – or click here. http://www.gioa.org/research/foundation.html Kaiser Permanente (San Francisco members), contact Eileen Goldman (415-833-8753) or Catherine Steinbach (415-202-3605).
Get Free help from HICAP offices throughout California with Medicare claims, appeals, denials or delays of service or treatment. You can receive unbiased advice about HMOs, Medicare supplements, long term care insurance, and much more.
Extensive web resource on aging issues from the American Association of Retired Persons.
National organization providing information on accessing hospice, related workshops, publications and information.
Professional membership association in the field of aging.
Professional membership association in the field of aging.
Chinese Language Resources
The following web sites are recommended and can be viewed using browsers with traditional Chinese (Big 5).
Sponsored by the University of Notingham, this site provides scientific based information on Lewy Body Dementia.
Our national office web site, filled with useful information and resources concerning Alzheimer’s disease.
General Interest and Online Resources