Resources for Patients & Caregivers

A wealth of resources and support services is increasingly available throughout communities and on the World Wide Web for individuals with Alzheimer's disease and their loved ones so that they need not feel that they are alone in facing such a devastating illness.

 

Local Support

At the Massachusetts General Hospital's (MGH) Memory Disorders Unit, we provide a free monthly support group for caregivers of patients with dementia in conjunction with the hospital's Department of Social Services. For more information about this group, please contact bmaxam [ at ] partners [dot] org (Barbara H. Maxam), LSW, at 617-724-0055.

 

Massachusetts General PrimeCare is a comprehensive fee-for-service elder care program for patients and employees of the MGH. In addition to the coordination of medical care, the program also provides guidance on financial, legal and insurance matters and a variety of services to support the physical and emotional well-being of elderly individuals and their loved ones.

 

The Senior Health-Geriatric Medicine Unit of the MGH has an active Senior HealthWISE ("Wellness, Involvement, Support & Education") community benefit program that hosts free health and wellness lectures, films, workshops, health screenings, exercise programs and support groups to benefit the well-being of age 60+ older adults who live in the hospital's neighborhood. For more information about the Unit's program, please visit www.massgeneral.org/geriatrics.

 

The Massachusetts ADRC is an active supporter of our local Alzheimer's Association (MA/NH chapter) in its ranges of programs and services for residents in the New England region. The chapter may be contacted at 617-868-6718. Its 24-hour national Helpline is available at 1-800-272-3900.

 

National Resources

The national Alzheimer's Association is the premier source of information for advocacy, research information, support programs and education for consumers. The national office of the Association is based in Chicago, IL, and its main contact number is 312-335-8700. Caregivers may also 'meet' other caregivers, learn about critical topics and connect with social workers via the Care Crossroads website of the Alzheimer's Foundation of America.

 

The federal National Institute on Aging and its Alzheimer's Disease Education and Referral Center (ADEAR) offers the latest news and publications on the diagnosis, treatment, care and research related to dementia, in addition to a 24-hour toll-free hotline (1-800-438-4380) for information, support and referrals, and automatic email alerts for the public. The U.S. Department of Health and Human Services' www.alzheimers.gov is also a great website 'for the people helping people with Alzheimer's'.

 

For individuals who wish to learn more about the range of national clinical trials available for study participation, please visit the free registry available on the Alzheimer's Disease Cooperative Study website, the Alzheimer's Association TrialMatch site, ResearchMatch and the National Institute on Aging's Alzheimer's Disease Education and Referral Center (ADEAR).

 

The Alzheimer Research Forum is an open-access community of professional science writers, editors and Information-Technology experts that collaborate to provide the latest scientific news, discussion forums and links to useful research databases for the public. The Nature Publishing Group has also debuted a Spotlight on Alzheimer's Disease website that provides a variety of perspectives on the disease.

 

Individuals who are not native speakers of English may wish to visit Medline Plus, a service of the National Institutes on Health, which currently provides high-quality health information in more than 40 languages on approximately 250 health topics.

 

A comprehensive list of other information, caregiver and support organizations may be found on the HBO: The Alzheimer's Project's Get Help page.

 

A list of health topics for older adults, including health videos and a brief overview of the federal government's health insurance information for older individuals (Medicare), is available at http://nihseniorhealth.gov/index.html. This site was developed by the National Institute on Aging and the National Library of Medicine of the National Institutes of Health.

 

A wonderful 'tool' to support individuals with dementia and their caregivers through creative engagement is the Timeslips Creative Storytelling Project. It was developed by educator, scholar and artist, Anne Bastings, PhD, to stimulate the imagination of people with memory problems, inspire loved ones to see beyond loss to recognize their strengths, and improve the quality of life for all caregivers. Also, check out a 'The Autobiography - Video Diary of My Journey with Dementia' produced by Dr. Roberg O'Donnell.

 

International Focus

The Alzheimer's Disease International (ADI) Organisation is an umbrella organization of more than 70 international Alzheimer associations that have official relations with the World Health Organization. Among its diverse activities, it hosts an international conference for professionals and consumers in conjunction with an ADI member organization each year. Check out the I AM-Care  platform for more information on caregiving for individuals with dementia.