Alzheimer’s Disease Education and Referral (ADEAR) Center, National Institute on Aging, P.O. Box 8250, Silver Spring, MD 20907-8250, (800-438-4380). ADEAR’s web site will help you find current, comprehensive information and resources from the National Institute on Aging (NIA). www.nia.nih.gov/Alzheimers. Under keyword search “frontotemporal degeneration” or “frontotemporal dementia.”
ALS Association (ALSA), 27001 Agoura Road, Suite 150, Calabasas Hills, CA 91301-5104 www.alsa.org (800)782-4747. On the home page, type in “frontotemporal dementia” for information about the overlap between FTD and ALS.
Alzheimer’s Association (USA), 225 N. Michigan Ave., Fl. 17, Chicago, IL. (800-272-3900 national Helpline), www.alz.org. The association publishes a variety of useful brochures (ask for “Related Disorders”, among others). Some chapters sponsor FTD support groups, lists of daycare centers, in-home care providers, nursing homes, and information about drugs, clinical trials, research, and care tips. Although it is geared toward Alzheimer’s, much of the information are helpful for FTD as well. You can locate the Alzheimer chapter near you by going to their website or calling their 800-number.
Alzheimer’s Society, United Kingdom, Gordon House, 10 Greencoat Place, London SW1P 1PH. Information Sheet, “What is fronto-temporal dementia (including Pick’s disease)?” www.alzheimers.org.uk. The website has a special section on “Younger People With Dementia,” with information designed for younger people with dementia, their families and their caregivers.
Alzheimer’s Australia, P. O. Box 4019, Hawker ACT 2614, Australia. Excellent Help Notes specific to Pick’s and frontal lobe dementia, reading list. www.alzheimers.org.au
Bluefield Project to Cure Frontotemporal Dementia, 1650 Owens Street, Room 205, San Francisco, CA 94158. The Bluefield Project was founded by a family group whose lives have been directly impacted by frontotemporal dementia. The Bluefield Project intends to raise awareness and increase support to accelerate frontotemporal dementia research. www.bluefieldproject.org.
CurePSP, 11350 McCormick Road, Suite 906, Hunt Valley, MD 21031. Toll free: 800-457-4777 or e-mail: email@example.com. An association dedicated to increasing awareness of progressive supranuclear palsy, corticobasal degeneration, and related disorders and providing support, education and hope for persons with PSP, CBD and their families. www.curepsp.org
Dementia Research Group, United Kingdom, The National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG, UK. – www.dementia.ion.ucl.ac.uk Click on CANDID (Counseling and Diagnosis in Dementia) for a wealth of information specific to FTD: Pick’s Disease Support Group, fact sheets, articles, books, newsletter. Or go directly to CANDID, www.pdsg.org.uk
Lewy Body Dementia Association, P.O. Box 451429, Atlanta, GA 31145-9429 www.lewybodydementia.org Tel: 404-935-6444 800-LEWYSOS (539-9767)
National Aphasia Association, 350 Seventh Avenue, Suite 902 New York, NY 10001 (212-267-2814 or 800-922-4622) www.aphasia.org.
National Organization for Rare Disorders, Inc. (NORD), 55 Kenosia Avenue, P. O. Box 1968, Danbury, CT 06813-1968 (203-744-0100 or 800-999-6673) www.rarediseases.org. Searchable website with brief information about rare diseases and organizations offering help. There is a small charge for full text reports.
NINDS (National Institute of Neurological Disorders and Stroke), National Institutes of Health, Bethesda, MD. Click on Disorders and Frontotemporal dementia to get the FTD information page. There also are fact sheets on FTD subtypes and information on related federal health initiatives. www.ninds.nih.gov
UCSF Memory and Aging Center Channel. (YouTube). www.memory.ucsf.edu Offers a series of videos on Alzheimer’s disease (AD) and related dementias for YouTube audiences to understand various neurodegenerative disorders. Videos also provide tips for caregivers, explain the research value of autopsy, and describe potential new therapies being studied.
WE MOVE (Worldwide Education and Awareness for Movement Disorders), 204 West 84th Street, New York, NY 10024, 212-875-8312 www.wemove.org. Information on corticobasal degeneration and other movement disorders.
The Genetic Alliance, 4301 Connecticut Ave. NW, Suite 404, Washington, D.C. 20008-2369 (202-966-5557) is an international coalition representing consumer and health professional organizations working together to promote healthy lives for everyone impacted by genetics. The Alliance supports individuals with genetic conditions and their families, educates the public and advocates for consumer-informed public policies. www.geneticalliance.org
Genetic Counseling, http://www.ncbi.nlm.nih.gov/sites/GeneTests/?db=GeneTests
National Society of Genetic Counselors, a searchable site helpful in finding a genetic counselor www.nsgc.org
Caregiver Support Organizations
Care.com’s Senior Care Directory is free to anyone and everyone, and provides a comprehensive listing of resources by state in seven categories: housing resources, transportation resources, home care, end-of-life care, legal resources, financial planning and management, and health care. Please note: AFTD does not endorse or validate any information posted on this website. We encourage consumers to proceed with care and vigilance. Care.com’s Senior Care Directory
Family Caregiver Alliance, 180 Market Street, Suite 1100, San Francisco, CA 94104 (415-434-3388 or 800-445-8106). Founded in 1977, the first community-based nonprofit organization in the U. S. to address the needs of families and friends providing long term care at home. Fact sheets on various dementias, as well as caregiver issues, statistics and demographics, www.caregiver.org/caregiver/jsp/publications.jsp?nodeid=345. Interview with Dr. Bruce Miller, UCSF, www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=679. On the home page type in “frontotemporal dementia” for a list of relevant articles.
FTD Caregiver Support Center(http://www.ftdsupport.com/index.html) Posts hundreds of website links to articles on frontotemporal degeneration (FTD) related issues. Strives to build a community of caregivers so people know that they are not alone dealing with frontotemporal dementia.
National Association of Geriatric Care Mangers (http://www.caremanager.org) 3275 West Ina Road, Suite 130 Tucson, AZ 85741, (520) 881-8008 Professional Geriatric Care Managers (PGCMs) are health and human services specialists who help families care for older relatives, while encouraging as much independence as possible. Site has information on how to find a PGCM.
Share The Care is a non-profit organization that provides information on how to organize a care group for someone who is seriously ill. Click on www.sharethecare.org. In addition, their site provides links to other sites caregivers might find useful. Click on www.sharethecare.org/pages/links.html.
Well Spouse Association (WSA) is A 501(c)(3) non-profit, self-help, and volunteer-based organization whose mission is to provide peer emotional support and information to the husbands, wives and partners of the chronically ill and/or disabled. WSA is the only national organization which focuses exclusively on spousal caregivers. WSA offfers local area support groups, mentors, respite weekends, an online forum, and more. www.wellspouse.org/ ; 1-800-838-0879
Area Agencies on Aging (U. S.)
These agencies provide many helpful long-term care services to patients and families. You may apply for state and federal financial aid (Medicaid) for home care and nursing home care through your local area agency on aging. Listings for area agencies on aging are located under “Guide to Human Services” in the “blue pages” of the telephone directory.
Eldercare Locator (www.eldercare.gov.)
The Eldercare Locator is a public service of the U.S. Administration on Aging. This searchable website is a first step for finding local agencies, in every U.S. community that can help older persons and their families access home and community-based services like transportation, meals, home care, and caregiver support services. To speak to an Eldercare Locator information specialist call toll-free 1-800-677-1116 weekdays, 9:00 a.m. to 8:00 p.m. (ET). Spanish-speaking Information Specialists are on duty.
On-line Support groups
FTD Support Forum www.ftdsupportforum.com/
This FTD and Pick’s support forum is an international support group set up by carers of people with various types of frontotemporal degeneration. The primary purpose is to communicate with one another in a supportive and friendly environment, and share support about the challenges faced as caregivers.
Pick’s Disease Support Forum for Kids http://health.groups.yahoo.com/group/picksdiseasesupportgroupforkids/
This is for children whose parent/parents have, grandparents or any loved ones diagnosed with various types of frontotemporal degeneration. The group is made up predominently of kids of caregivers but also welcomes people in the medical profession or who have an interest in this area. This discussion list allows the kids of carers to communicate with one another in a supportive environment.
Dementia Grief Counseling
This group provides support and advice for relatives and friends of people who have died from dementia and related illnesses or causes.
Online Support Group for Patients
Howard Glick runs a closed group on Facebook for people diagnosed with FTD. Anyone interested in joining it can email him at firstname.lastname@example.org.
Pain Behaviors and Dementia (from Canada) – Online Workshop for Families and Caregivers