The following links may provide useful information to persons diagnosed, care partners, healthcare professionals and researchers.
- ALS Association (search for keywords “frontotemporal dementia” for information about the overlap between FTD and ALS)
- Alzheimer’s Association
- Alzheimer’s Disease Education and Referral Center (search for keywords “frontotemporal degeneration” or “frontotemporal dementia”)
- Aphasia Research Treatment Lab at the University of Texas at Austin
- Baycrest Health Sciences
- Bluefield Project to Cure Frontotemporal Dementia
- Brain Support Network
- Cure VCP Disease, Inc.
- Lewy Body Dementia Association
- National Aphasia Association
- The National Institute of Neurological Disorders and Stroke’s page on Frontotemporal Degeneration
- National Institute of Health Neurobiobank and Brain Donor Project
- National Organization for Rare Disorders (visit NORD’s page on FTD directly by clicking here)
- UCSF Memory and Aging Center
- Genetic Alliance
- The National Center for Biotechnology Information’s Genetic Testing Registry
- National Society of Genetic Counselors
- Care.com’s Senior Care Directory– Lists senior-care 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
- Lotsa Helping Hands: An online resource that connects caregivers, individuals, and families who need help with those who want to lend a helping hand.
- Share the Care– A non-profit organization that provides information on how to organize a care group for someone who is seriously ill.
- Well Spouse Association– A volunteer-based non-profit 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.
Area Agencies on Aging
These agencies provide many helpful long-term care services to patients and families. You may apply for state and federal financial aid (through Medicaid) for home care and nursing home care through your local agency on aging. Visit the National Association of Area Agencies on Aging for more information.
The Eldercare Locator is a public service of the U.S. Administration on Aging. This searchable website is a first step for finding agencies in your community that can help older persons and their families to access home and community-based services like transportation, meals, home care, and caregiver support services.