Support Groups for Dementia Caregivers: What to Expect and How to Find One

When you're caring for someone with dementia, the isolation can be suffocating. Friends who don't understand why you can't meet for lunch anymore. Family members who offer useless advice or judge your decisions. A spouse or parent who no longer recognizes you or can't hold a conversation. You're surrounded by people but profoundly alone because no one in your life truly understands what you're going through every single day.

You've probably heard that support groups might help, but the idea feels daunting. What happens in a support group? Will you have to share deeply personal things with strangers? What if everyone's situation is different from yours? What if you start crying and can't stop? What if it's just more people complaining and you leave feeling worse? And how are you supposed to attend when you can't even leave your loved one alone for an hour?

Support groups aren't for everyone, but for many dementia caregivers, finding a group of people who genuinely understand becomes a lifeline. It's the one place where you don't have to explain, justify, or minimize. Where someone says "yes, exactly" when you describe the impossible daily struggles. Where you learn practical strategies from people living the same reality. Where you're reminded you're not failing, you're not alone, and you're doing an incredibly hard thing.

In this guide, you'll learn what actually happens in dementia caregiver support groups, different types of groups and how to choose, how to find groups (in-person and online), what to expect at your first meeting, and how to know if a group is right for you.

If You Only Do 3 Things in the First Week

What Actually Happens in a Dementia Caregiver Support Group?

Short answer: Groups typically meet regularly (weekly or monthly) for 1-2 hours with a facilitator. Members share challenges, feelings, and experiences, offer each other advice and support, and learn about dementia and resources. Format varies but most involve some sharing, some education, and lots of validation.

Support groups aren't therapy sessions or complaint sessions. They're structured gatherings of people dealing with similar challenges who help each other cope.

What Support Groups Provide

• Emotional validation: When you say "I sometimes resent him" and five people nod and say "me too," the shame and isolation decrease.
• Practical advice from people who've been there: Other caregivers know which medications helped, which programs are good, how to handle difficult situations.
• Permission to struggle: You can be honest about how hard it is without anyone suggesting you should just try harder.
• Reduced isolation: Having people who understand breaks the terrible isolation of dementia caregiving.
• Hope and perspective: Seeing people further along who've survived gives you hope that you can too.
• Information and resources: Facilitators and members share information about services and programs you might not know about.

For more on the emotional challenges support groups can help with, see our guide on signs of caregiver burnout.

What Types of Support Groups Are Available?

Short answer: Main types include in-person groups, online forums and communities, video call groups, phone-based groups, and specialized groups (early-stage, late-stage, specific relationships, specific diagnoses). Format and focus affect what works best for you.

In-Person Support Groups

• How they work: Meet at a physical location at set times, usually weekly or monthly. Sit in a circle, facilitated by a social worker or trained volunteer.
• Pros: Face-to-face human connection, body language and eye contact add depth, easier to build relationships.
• Cons: Requires arranging care for your loved one, transportation, fixed schedule, might not be available in rural areas.
• Best for: People who value in-person connection, those who can arrange respite care for meetings.

Online Forums and Communities

• How they work: Written posts and replies on websites or social media groups. Read and post anytime. Examples: ALZConnected, AgingCare.com forums, Facebook groups.
• Pros: Available 24/7, no scheduling or travel required, anonymity if desired, huge variety of perspectives.
• Cons: Lack of real-time interaction, can feel impersonal, harder to build deep relationships.
• Best for: People who can't get out for in-person meetings, those who prefer writing to talking, people wanting broader perspectives.

Video Call Support Groups

• How they work: Meet via Zoom or similar platform at scheduled times. See and hear each other in real-time from your own homes.
• Pros: Real-time interaction with faces and voices, no travel required, no need to arrange care if your loved one is home.
• Cons: Requires internet and basic tech skills, can feel awkward initially, technical issues occasionally disrupt.
• Best for: People with good internet access, those comfortable with video calls, anyone who wants connection without leaving home.

Specialized Support Groups

• Early-stage caregiver groups: For caregivers of people with mild dementia. Focus on adjustment to diagnosis, early planning.
• Late-stage caregiver groups: For caregivers dealing with advanced dementia. Focus on 24/7 care needs, end-of-life planning.
• Spousal caregiver groups: Specifically for spouses. Unique challenges of losing your life partner and intimate relationship.
• Adult child caregiver groups: For adult children caring for parents. Different dynamics than spousal caregiving.
• Bereavement groups: For caregivers after their loved one has died. Processing grief and adjusting to life after caregiving ends.

For understanding different stages of dementia, see our dementia symptom progression timeline.

How Do I Find a Dementia Caregiver Support Group?

Short answer: Start with the Alzheimer's Association (offers free groups nationwide, in-person and online), contact your Area Agency on Aging, ask at your loved one's doctor's office, search online for local and virtual options, and try several before deciding what works best.

Major Resources for Finding Groups

• Area Agency on Aging: Call Eldercare Locator at 1-800-677-1116 or visit eldercare.acl.gov. Ask specifically about caregiver support groups.
• Hospitals and medical centers: Many hospitals with geriatric programs host support groups. Ask at your loved one's doctor's office.
• Faith-based organizations: Churches and religious communities sometimes host support groups.
• Online search: Search "dementia caregiver support group [your city]" or "Alzheimer's caregiver support online."

What to Ask When Evaluating Groups

• What's the format and focus? General dementia caregiving or specific to stage/relationship/diagnosis?
• How large is the group? Small groups allow more individual attention. Large groups offer more perspectives.
• Who facilitates? Professional social worker, trained volunteer, or peer-led?
• What's the culture like? Some groups are more solution-focused, others allow more venting and emotional expression.
• Is attendance required? Can you come occasionally when you need it?

For more on getting breaks to attend support groups, see our guide on respite care options for dementia caregivers.

What Should I Expect at My First Meeting?

Short answer: You'll be welcomed, introduced (you can share as much or as little as you're comfortable with), and invited to participate but never forced. Most groups are warm and understanding. You can just listen if you prefer. First meetings are often emotional but in a relieving way.

Before the Meeting

• Arrive a few minutes early if in-person. Gives you time to settle. If virtual, log in early to handle tech issues.
• Bring tissues. You might cry, and that's completely okay and normal. Everyone there has cried.
• Don't worry about how you look. Showing up exhausted, disheveled, or emotional is completely acceptable.

During the Meeting

• Facilitator will welcome you. They'll ask you to briefly introduce yourself. "I'm Sarah, I'm caring for my mom who has Alzheimer's, and I'm here to learn" is completely sufficient.
• You don't have to share your story immediately. It's fine to say "I'm new and just here to listen today."
• People will likely be very warm and welcoming. Most groups are immediately supportive of new members.
• You might hear stories that resonate deeply. Expect to think "yes, that's exactly what I'm going through" multiple times.
• It's okay to cry. Everyone cries in support groups. No one will think less of you.
• You can leave early if needed. Most facilitators understand.

After the Meeting

• Give yourself time to process. First meetings often bring up a lot of emotions. This is normal.
• Decide if you want to return. Try at least 2-3 meetings before deciding if it's the right fit.
• Try a different group if this one didn't work. Group culture varies significantly.

For more on managing emotions and communication, see our guide on communication strategies.

What If I'm Not Comfortable Sharing Personal Things with Strangers?

Short answer: You don't have to. Most groups welcome listeners who don't share. You can participate by asking questions or offering support to others without revealing personal details. Start as a listener and share when (or if) you're ready.

Options for Participating Without Oversharing

• Just listen. Many groups explicitly welcome people who want to just listen. You can attend for weeks without sharing your own story.
• Ask questions instead of sharing stories. "How do you handle it when your loved one refuses to bathe?" is participating without revealing personal details.
• Share practical information instead of feelings. "I found this adult day program helpful" contributes without emotional vulnerability.
• Offer support to others. "That sounds so hard" validates others without requiring you to tell your full story.
• Share anonymously online. Online forums allow you to share with more anonymity and control.
• Share gradually as you feel safe. Many people start by just listening, then share more over time.

Privacy and Confidentiality

• Most groups have confidentiality agreements. What's shared stays in the group.
• You control what you share. You're never obligated to share identifying details.
• Good facilitators protect members from feeling pressured to share more than they want.
• If privacy is a major concern, consider phone-based or anonymous online options.

How Do I Know If a Support Group Is Right for Me?

Short answer: It's right for you if you feel less alone after attending, if you learn strategies that help, if you can be honest without judgment, or if you leave feeling validated. Give it 3-4 meetings before deciding. It's okay if groups aren't your thing.

Signs a Group Is Working for You

• You feel less isolated. Knowing others understand reduces the crushing loneliness of caregiving.
• You're learning practical strategies. Other members share techniques and resources you hadn't thought of.
• You can be honest. You can say difficult things without being judged.
• You feel validated. People respond with "me too" rather than minimizing.
• You look forward to meetings. Even if exhausted, you want to go because it helps.
• Your coping improves. You're handling challenges better, feeling less guilty.

Signs a Group Might Not Be Right for You

• You feel worse after attending. If meetings leave you more depressed or overwhelmed, this group isn't working.
• It's all complaining without solutions. Some venting is healthy, but only negativity isn't helpful.
• The culture doesn't fit. Maybe it's too cheerful when you need to express pain, or too negative when you need hope.
• Your situation is too different. If everyone's circumstances differ significantly, you might not relate.
• The format doesn't work. In-person might be too hard logistically, or online might feel too impersonal.

What to Do If the First Group Doesn't Work

• Try a different format. If in-person didn't work, try online. If online felt impersonal, try video groups.
• Try a specialized group. A group specifically for your situation might fit better than a general group.
• Try individual therapy instead. Some people do better with one-on-one counseling.
• Accept that groups aren't for you. It's okay to get support other ways.

For more on getting family support, see our guide on how to ask siblings for help.

What Should We Expect as Dementia Progresses?

Short answer: Your support needs change as dementia advances. You might start with general caregiver groups, then benefit from specialized groups (late-stage, end-of-life), and eventually from bereavement groups. Support groups can help you navigate each transition.

• Early stage: Groups focused on adjustment to diagnosis, planning ahead, managing mild symptoms. Learning from people further along helps you prepare.
• Middle stage: This is often when support groups become most critical. Care is intensely demanding, isolation is severe. Groups provide essential emotional support.
• Late stage: Groups focus on end-of-life planning, grief while caregiving, managing total care needs, making difficult decisions.
• Post-caregiving: Bereavement groups help you process grief, adjust to life after caregiving ends.

For more on navigating transitions, see our guide on when to know it's time for memory care.

How CareThru Can Help You Stay Connected with Support

Managing information from support groups (resources mentioned, strategies to try, contact information for helpful members) can be overwhelming when you're already exhausted.

CareThru can help you organize recommendations from support group members: names of good adult day programs, helpful medications to discuss with doctors, agencies that provide services, or strategies to try with difficult behaviors.

You can also use CareThru to track what you want to ask or discuss at the next meeting. When something challenging happens, you can log it so you don't forget by the time the meeting comes.

If you connect with specific group members who offer to help, you can store their information in one place for when you need support between meetings.

Frequently Asked Questions About Support Groups

Disclaimer: This article is for informational purposes only and is not a substitute for professional mental health care or therapy. Support groups complement but don't replace professional counseling when needed.

Final Thoughts: You Don't Have to Do This Alone

Dementia caregiving is one of the loneliest experiences you'll ever face. Friends drift away because you're never available. Family members who don't help can't relate to what you're going through. The person you're caring for can't provide the emotional support they used to. You're isolated in plain sight, surrounded by people who don't and can't understand.

Support groups don't fix the isolation completely. You still have to go home and provide care. But they give you one place, one time, where you're not alone in it. Where people truly get it. Where you can say the things you can't say anywhere else. Where you're not crazy, not weak, not failing—just human, dealing with impossible circumstances as best you can.

Not every group will be the right fit. Not every meeting will be helpful. Some days you won't have the energy to attend. But if you can find even one group that feels like your people, where you can be honest and feel understood, it can be the difference between surviving caregiving and being destroyed by it.

You deserve support. You deserve connection. You deserve to not be alone in this. Try it. Give it a few meetings before deciding. You might be surprised how much it helps to simply be in a room (or on a screen) with people who get it.

For more support on your caregiving journey, explore our resources on respite care options and how to ask siblings for help. You're not alone, and there are people ready to help.