Senior Psychcare

Scientific and medical information

1. American Psychiatric Association Public Information on Alzheimer’s Disease

http://www.psych.org/public_info/alzheim.cfm

Provides a good general description of the disease, its diagnosis and treatment, and provides guidance for family members and caregivers.

1. American Academy of Family Physicians:  Early Diagnosis of Dementia

http://www.aafp.org/afp20010215/703.html

Outlines the diagnostic process and includes examples of standard tests.

1. Pub/Med

http://www.ncbi.nlm.nih.gov/PubMed/

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.

News

1. Medline Plus:  Health Information on Alzheimer’s Disease

http://www.nlm.nih.gov/medlineplus/alzheimersdisease.html

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.

1. Doctor’s Guide

http://www.docguide.com/news/content.nsf/PatientResAllCateg/Alzheimer’s%20Disease?OpenDocument#News

Clinical Trials

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.

1. Alzheimer’s Disease Clinical Trials Database

http://www.alzheimers.org/trials/index.html

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.

1. CenterWatch Clinical Trials Listing Service:  Alzheimer’s Disease

http://www.centerwatch.com/patient/studies/CAT11.html

Information on clinical trials sites, but not comprehensive, and contains only sketchy information about the drugs in the clinical trials.

1. Veritas Medicine

http://www.veritasmedicine.com/d_index.cfm

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

1. Common Problems in Early Alzheimer’s Disease

http://www.alzmass.org/about_ad.htm

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.

1. Alzheimer’s, Dementia and Driving

http://www.thehartford.com/alzheimers/

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.

1. Alzheimer’s and Exercise

http://www.ncpad.org/whtpprs/alzheimer’s. Htm

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.

1. Ageless Design

http://www.agelessdesign.com/

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.

Support Communities

1. Family Caregiving 101

                http://www.familycaregiving101.org/

1. ElderCare Online

http://www.ec-online.net/index.htm

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:

http://216.122.139.136/cgi-bin/ultimatebb.cgi

1. ElderCare Online maintains a busy live chat series, including support groups and moderated Q&A with experts from Columbia University’s Taub Institute for Research on Alzheimer’s Disease and the Aging Brain.

http://www.ec-online.net/Community/chatschedule.htm

1. BrainTalk Communities (Massachusetts General Hospital Neurology Web)

http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi

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

http://www.alzforum.org

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

        Not-for-profit

        Independent

        Professionally managed

        Diverse and inclusive

        Collaborative

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:

1. Papers of the Week

http://www.alzforum.org/pap/result.asp?type=current

Weekly updated list of citations with commentary by the research community.

1. Research News

http://www.alzforum.org/new/default.asp#researchnews

Our own independently reported news on important developments in Alzheimer research and related fields of applied and basic science.

1. Live Discussions

http://www.alzforum.org/res/for/journal/default.asp

Forums on hot scientific topics and controversies.  We use both live chat rooms and email postings, to accommodate as many participants as possible.

1. Data directory:  Mutations

http://www.alzforum.org/res/com/mut/default.asp

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:

1. Disease Management

http://www.alzforum.org/dis/default.asp

A guide for the public on basic facts, diagnosis, treatment and care giving

1. Drugs in Clinical Trials

http://www.alzforum.org/dis/tre/drc/default.asp

A searchable database of drugs in clinical trials (Phase II and beyond) for Alzheimer therapy.

What’s missing:  information on trial locations.

1. Ask the Expert

http://www.alzforum.org/dis/exp/ask/default.asp

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.

1. Hypothesis Factory

http://www.alzforum.org/res/adh/hyp/default.asp

A place where experts and lay people alike can post anecdotal observations and speculations.  Who knows where the next good idea might come from?

1. ElderCare Online joint projects

http://www.ec-online.net/chat.html

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.

Additional Resources

San Francisco - Northern California Chronic Care Network for Dementia

http://www.gioa.org/

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).

Advocacy

California Advocates for Nursing Home Reform (CANHR)

http://www.canhr.org/NH_Data/
Offers information and advocacy for nursing home residents and their families and friends. Information on Skilled Nursing Facilities, specific services, and any documented licensing complaints, can be reached at:

California Council of the Alzheimer's Association

http://www.caalz.org/
Offers information and access to bills regarding legislative priorities at the statewide level. These are all issues that reflect primary interest to the Alzheimer's Association network throughout the state of California.

Families USA Foundation

http://www.familiesusa.org/
National non-profit organization focused on affordable long term care.

1. Health Insurance Counseling and Advocacy Program (HICAP)

http://www.cahealthadvocates.org/

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.

Associations in the Field of Aging

1. AARP Webplace

http://www.aarp.org/

Extensive web resource on aging issues from the American Association of Retired Persons.

1. American Hospice Foundation

http://www.americanhospice.org/

National organization providing information on accessing hospice, related workshops, publications and information.

1. American Society on Aging

http://www.asaging.org/

Professional membership association in the field of aging.

1. Gerontological Society of America

http://www.geron.org/

Professional membership association in the field of aging.

Disease Specific Organizations

http://www.alz.org/

Our national office web site, filled with useful information and resources concerning Alzheimer’s disease.

General Interest and Online Resources

Caregiver Magazine On-Line

http://www.caregiving.com
Site offers bulletin board for caregivers, e-mail responses to questions and articles on caregiving.