USA Dementia Support Organisations
1. Alzheimer’s Association 225 North Michigan Avenue, Floor 17, Chicago, IL 60601 24/7 Helpline: 800-272-3900 Website: alz.org
The leading voluntary health organization in Alzheimer’s care, support and research. Provides care consultations, support groups, education programs, and crisis assistance in over 200 languages, available 24 hours a day, 365 days a year. Also offers the ALZNavigator tool to help caregivers find local resources and peer connections.
2. Alzheimer’s Foundation of America 322 Eighth Avenue, 16th Floor, New York, NY 10001 Phone: 866-232-8484 Website: alzfdn.org
Provides support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias. Offers online courses, live webinars, and a helpline staffed by licensed social workers seven days a week.
3. Alzheimer’s Disease Education and Referral Center (ADEAR) National Institute on Aging Phone: 800-438-4380 Email: adear@nia.nih.gov Website: alzheimers.gov
A service of the National Institute on Aging at the National Institutes of Health. Information specialists provide research-based guidance on dementia types, symptoms, clinical trials, and planning after a diagnosis including legal and financial considerations.
4. Eldercare Locator Phone: 800-677-1116 Website: eldercare.acl.gov
A free public service of the Administration for Community Living that connects caregivers to their local Area Agency on Aging. Provides needs assessments and links to local services including home care, transportation, meals, and caregiver support programs.
5. Family Caregiver Alliance 235 Montgomery Street, Suite 930, San Francisco, CA 94104 Phone: 800-445-8106 Website: caregiver.org
Provides expert support, resources and guidance to family caregivers of adults with cognitive impairments. Offers a Family Care Navigator tool to find state-specific support programs, as well as specialist resources for spousal caregivers and those managing bereavement.
6. SHIP — State Health Insurance Assistance Program Website: shiphelp.org
Provides free counselors in every state to help caregivers navigate the complexities of Medicare, Medicaid, and Social Security Disability entitlements. If you are uncertain about what government funding the person you care for may be entitled to, this is a good starting point.
7. Lewy Body Dementia Association 912 Killian Hill Road SW, Suite 205, Lilburn, GA 30047 Phone: 404-935-6444 Helpline: 800-539-9767 Website: lbda.org
Offers trusted and confidential support services for individuals diagnosed with Lewy body dementia, care partners and family members. Provides help identifying education and community resources, emotional support and referrals.
8. Association for Frontotemporal Degeneration (AFTD) 2700 Horizon Drive, King of Prussia, PA 19406 Helpline: 866-507-7222 Website: theaftd.org
The leading US nonprofit working to improve the lives of people with frontotemporal degeneration, their care partners and loved ones. Offers a helpline, support groups, education conferences, and webinars. FTD is the most common form of dementia for people under 60.
9. National Academy of Elder Law Attorneys (NAELA) Website: naela.org
A directory to help you find attorneys who specialize in elder law, including the execution of Durable Power of Attorney, living trusts, and advance directives. Legal planning must be completed while the person living with dementia still has the capacity to make decisions. If cost is a concern, basic advance care planning documents are also available free through your local Area Agency on Aging.
10. Long-Term Care Ombudsman Website: theconsumervoice.org
A free, independent advocacy service available in every state that investigates quality-of-care concerns and protects the rights of residents in care facilities. If you have concerns about the standard of care a family member is receiving in a nursing home or assisted living facility, this is the appropriate contact.
Practical Notes for USA Caregivers
- Younger-onset dementia and financial planning Standard dementia services are often geared toward an older population. If the diagnosis occurred before age 65, ask the Alzheimer’s Association specifically about dedicated younger-onset programs. The financial pressures on younger families, including mortgages, dependent children and employment, require support that general dementia services do not always provide.
- Hospice care does not require a six-month prognosis A common misconception prevents families from accessing palliative and hospice care earlier than they should. In the US, hospice eligibility is based on functional decline rather than a specific time prognosis. If the person you care for needs help with three or more activities of daily living, it is worth contacting a hospice organization directly for an assessment.
- A critical note for Lewy body dementia If the person you are caring for has been diagnosed with Lewy body dementia, this diagnosis must be clearly communicated to all medical staff before any new medication is prescribed, particularly antipsychotics. People with Lewy body dementia can have severe and life-threatening reactions to medications that are routinely used for other forms of dementia. Never assume this information has been passed on between providers.
- Legal planning cannot wait Power of Attorney and advance directive documents can only be executed while the person living with dementia still has the legal capacity to do so. That window narrows as the condition progresses. If you have not yet addressed these matters, contact an elder law attorney through NAELA or access free document templates through your local Area Agency on Aging via the Eldercare Locator.