Dementia and Alzheimer’s resources
A dementia diagnosis changes the caregiving picture. It is not simply a memory problem; it is a progressive condition that affects judgment, personality, safety, and eventually every function the person takes for granted. The organizations below are the ones I point families to first — for information, local support, disease-specific guidance, and help understanding what’s ahead.
Alzheimer’s disease — family support and research
Alzheimer’s Association
The largest US nonprofit dedicated to Alzheimer’s care, support, and research. The 24/7 helpline (1-800-272-3900) is the single most useful phone number in Alzheimer’s caregiving — it connects families to live counselors at any hour. Local chapters offer support groups, care consultations, and educational programs in most communities. The website carries a care-planning guide, stage-by-stage guidance, and a clinical trial finder. — alz.org
Alzheimer’s Foundation of America (AFA)
National nonprofit focused on care and support for individuals with Alzheimer’s disease and their families. The AFA National Toll-Free Helpline (1-866-232-8484) is staffed by licensed social workers. AFA’s memory screening program and the AFA Care Guide are practical starting points for newly diagnosed families. — alzfdn.org
NIA Alzheimer’s Disease Education and Referral Center (ADEAR)
Federal resource from the National Institute on Aging. The definitive government source for plain-English explanations of Alzheimer’s, dementia types, current research, and clinical trial information. Free publications for families and professionals. — nia.nih.gov/alzheimers
BrightFocus Foundation
Independent nonprofit funding Alzheimer’s and macular degeneration research. The BrightFocus Alzheimer’s Disease Research program funds early-stage science; the consumer site provides a caregiver guide, a “Fact Sheet” series, and a Q&A format useful for families in the early diagnostic phase. — brightfocus.org
Other dementia types — disease-specific resources
Alzheimer’s is the most common form of dementia, but not the only one. If your parent’s diagnosis is Lewy body dementia, frontotemporal dementia, vascular dementia, or another type, these organizations provide disease-specific guidance that general Alzheimer’s resources often don’t cover.
Lewy Body Dementia Association (LBDA)
The primary US nonprofit dedicated to Lewy body dementia. Lewy body dementia is frequently misdiagnosed — it presents differently than Alzheimer’s, responds differently to medications, and requires specific care precautions. LBDA’s online caregiver support groups and care team consultation support are among the most specific resources available for this diagnosis. — lbda.org
Association for Frontotemporal Degeneration (AFTD)
The primary US nonprofit dedicated to frontotemporal dementia (FTD). FTD predominantly affects people under 65 and is often the dementia diagnosis families are least prepared for. AFTD offers a helpline, a comprehensive care guide, and peer support specifically for FTD families — resources that are not well-covered by Alzheimer’s-specific organizations. — theaftd.org
Where to start in a hurry
If the diagnosis just happened: call the Alzheimer’s Association helpline (1-800-272-3900) first. They will help you understand the diagnosis, identify what stage you may be in, and connect you to local resources. If the diagnosis is Lewy body or frontotemporal dementia specifically, contact LBDA or AFTD in addition — the disease-specific guidance is meaningfully different from general Alzheimer’s resources, and that difference matters for care decisions.