Crisis Resources
Communities That Actually Help
The right community can be the difference between surviving caregiving and collapsing under it. Here are the groups, forums, and platforms where people actually understand what you're going through.
Why Community Matters
Social isolation is one of the six axes of Dementia Caregiver Syndrome. The average caregiver loses 40-60% of their social network within the first two years. Replacing even a fraction of that lost connection with people who understand your situation can measurably improve your mental health, reduce stress hormones, and help you make better caregiving decisions.
The communities listed here are not curated by us and we do not control their content. We've listed them because caregivers consistently report finding them valuable. Your experience may vary.
Facebook Groups
Facebook groups remain the largest and most active online communities for dementia caregivers. The best are private (posts aren't visible to your regular friends) and moderated.
Memory People
~150,000+ members
One of the largest dementia caregiver groups on Facebook. Founded by a person living with early-onset dementia, giving it a unique dual perspective. Active moderation, supportive culture. Good for emotional support and practical advice.
Dementia Caregivers Support Group
~120,000+ members
Large, active group with a mix of practical advice, venting, and emotional support. Can move quickly due to size. Helpful for getting rapid answers to practical questions. Moderation quality varies.
Lewy Body Dementia Carers
~25,000+ members
Focused on Lewy body dementia, which has unique challenges (hallucinations, medication sensitivities, motor symptoms). Smaller community means more personal connections. Essential if your loved one has LBD.
The Purple Elephant (FTD)
~15,000+ members
Focused on frontotemporal dementia, which often strikes younger people (40s-60s) and presents with behavioral changes rather than memory loss. The experience is distinct from Alzheimer's caregiving, and this group understands that difference.
Reddit Communities
Reddit communities tend to be more anonymous, which can make it easier to discuss difficult topics. The format also makes it easier to search past posts for specific questions.
r/dementia
The primary Reddit community for dementia caregivers. Active, supportive, and surprisingly knowledgeable. Good for both emotional support and practical questions. The anonymity allows people to share things they wouldn't post on Facebook.
r/CaregiverSupport
Broader caregiving community (not dementia-specific) but many dementia caregivers participate. Useful for issues that cross caregiving types: burnout, family conflict, financial stress, end-of-life decisions.
r/AgingParents
Focused on adult children navigating their parents' aging, including dementia. Particularly good for the "sandwich generation" dealing with both aging parents and their own children.
r/Alzheimers
Smaller but focused community specifically for Alzheimer's disease. Mix of caregivers, people with early-stage diagnosis, and researchers. Good for Alzheimer's-specific questions about medications, progression, and clinical trials.
Dedicated Platforms
ALZConnected
by the Alzheimer's Association
The Alzheimer's Association's own community platform. Message boards organized by topic (early stage, middle stage, late stage, grief and loss). Moderated by trained volunteers. Also offers real-time chat. Free. The most "official" online community for Alzheimer's caregivers.
AgingCare.com
Large caregiving forum with active discussion boards. Strong on practical topics: Medicare, Medicaid, home care agencies, facility selection, legal questions. Less emotional support-focused than Facebook groups. Excellent search functionality for finding past discussions on specific topics.
Caregiver Action Network (CAN)
Provides peer support, education, and a helpline (1-855-227-3640). Their online community is smaller but well-moderated. They also offer a free "Caregiver Help Desk" with professional care consultants who can help navigate specific challenges.
In-Person Resources
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Alzheimer's Association Support Groups
Free, facilitated groups in most communities. Find one at alz.org/help-support or call 1-800-272-3900. Available both in-person and virtual.
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Area Agency on Aging
Your local AAA often sponsors caregiver support groups. Call 1-800-677-1116 (Eldercare Locator) to find yours.
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Hospital and Health System Groups
Many hospitals and health systems offer free caregiver support groups. Check with your loved one's neurologist's office or the hospital's social work department.
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Faith-Based Communities
Some churches, synagogues, and mosques offer caregiver support programs. Stephen Ministry and similar programs provide trained lay counselors who visit caregivers regularly.
Underserved Populations
Most caregiving resources are designed for a default profile: female, white, middle-class, heterosexual, living near the person with dementia. If that's not you, finding community can be harder. Here are resources for specific populations:
Men make up approximately 40% of dementia caregivers but are significantly underrepresented in support groups and online communities. Many male caregivers report feeling invisible in spaces designed primarily for women. Resources: The <a href="https://caregiveraction.org/" target="_blank" rel="noopener noreferrer" className="text-accent hover:underline">Caregiver Action Network</a> has male-focused content. Some local Alzheimer's Association chapters offer men's support groups. Reddit's <a href="https://www.reddit.com/r/CaregiverSupport/" target="_blank" rel="noopener noreferrer" className="text-accent hover:underline">r/CaregiverSupport</a> tends to have more male participants than Facebook groups.
LGBTQ+ caregivers face unique challenges: potential discrimination in healthcare settings, lack of legal recognition of caregiving relationships in some contexts, smaller family support networks, and invisibility in mainstream caregiving resources. Resources: <a href="https://www.sageusa.org/" target="_blank" rel="noopener noreferrer" className="text-accent hover:underline">SAGE</a> provides services and advocacy for LGBTQ+ elders and their caregivers. The <a href="https://www.caregiver.org/" target="_blank" rel="noopener noreferrer" className="text-accent hover:underline">Family Caregiver Alliance</a> has LGBTQ+ specific resources. The <a href="https://www.lgbtagingcenter.org/" target="_blank" rel="noopener noreferrer" className="text-accent hover:underline">National Resource Center on LGBTQ+ Aging</a> offers a helpline and support services.
The Alzheimer's Association operates a Spanish-language helpline at 1-800-272-3900 (press 2 for Spanish). The Association's website has a Spanish-language section. Local chapters in areas with large Hispanic populations often offer Spanish-language support groups. The <a href="https://www.latinoalzheimers.org/" target="_blank" rel="noopener noreferrer" className="text-accent hover:underline">Latino Alzheimer's and Memory Disorders Alliance (LAMDA)</a> provides culturally specific resources and support.
Approximately 15% of caregivers live more than an hour away from the person they care for. The unique challenges — guilt about distance, difficulty coordinating care remotely, expense of travel, feeling out of the loop — are rarely addressed in standard support resources. The <a href="https://www.nia.nih.gov/" target="_blank" rel="noopener noreferrer" className="text-accent hover:underline">National Institute on Aging</a> has a specific guide for long-distance caregiving. The <a href="https://caregiveraction.org/" target="_blank" rel="noopener noreferrer" className="text-accent hover:underline">Caregiver Action Network</a> offers a long-distance caregiving toolkit. Online communities are particularly valuable for long-distance caregivers who cannot attend in-person groups.
Disclaimer: proxi.care does not operate, moderate, or endorse any of the communities listed above. We provide this list as a resource based on caregiver reports and our own research. Community experiences vary. Online communities may contain inaccurate medical information — always verify medical advice with a healthcare professional. If you encounter harmful content in any online space, report it to the platform's moderators.