7 Top Caregiver Support Organizations for Alzheimer’s and Dementia

Providing care for a person with Alzheimer’s disease or any other type of cognitive impairment can encompass a broad range of tasks and responsibilities. For family members who take on a caregiving role, figuring out what’s needed, when, and how to provide it can be daunting.

That’s where organizations with expertise in treating Alzheimer’s disease and other forms of dementia, as well as patient advocacy groups for people with Alzheimer’s and dementia, can be helpful.

Such organizations can educate family caregivers on what to expect over time, as well as what sort of planning would be helpful at the outset, so a person’s medical, financial, and long-term care needs can be met as their condition progresses. And they have a wealth of tips on getting through the day-to-day challenges of caring for a person with dementia.

Many of these organizations also host regular support groups for caregivers in an effort to alleviate the emotional toll of caregiving. Some support groups are geared toward specific populations of caregivers, such as adult children, spouses, or caregivers of individuals in residential care, while other groups are open to all caregivers of people with dementia.

The following seven organizations offer a variety of support services for dementia caregivers.

1. Alzheimer’s Association

The Alzheimer’s Association is a leading patient advocacy organization for Alzheimer’s disease, dedicated to advancing research on the disease, improving treatment, and supporting those who have it and their loved ones.

To that end, it offers support groups specifically for caregivers, as well as the free ALZConnected online community for caregivers, as well as people with dementia, to connect with others in similar circumstances.

You can stay up to date with the Alzheimer’s Association by signing up for their free e-newsletter or following them on Facebook, Instagram, and other social media sites.

2. BrainGuide by UsAgainstAlzheimer’s

BrainGuide by UsAgainstAlzheimer’s is all about empowering individuals who are concerned that they might have Alzheimer’s, as well as people caring for a person with Alzheimer’s or another form of dementia. The website offers a memory questionnaire that can be self-administered or taken by a caregiver on behalf of a loved one. It doesn’t provide a diagnosis, but can be useful in starting a conversation with one’s healthcare provider.

The website also has an Alzheimer’s Caregiver Toolkit, with suggestions for self-care, and a page of tips for supporting the whole family when one member has Alzheimer’s.

The UsAgainstAlzheimer’s Community on Facebook is another place for caregivers to seek support and share questions, tips, thoughts, and advice with others facing similar challenges.

3. Caregiver Action Network

The Caregiver Action Network provides education, peer support, and resources to family caregivers across the United States. Education is delivered through articles and videos tailored to the caregiving situation: caring for a child, for someone who’s been injured, or for an adult with Alzheimer’s or another type of dementia. The Help Desk can answer questions or just lend a friendly ear to caregivers who need to talk. It’s staffed Monday through Friday, 8 a.m.–7 p.m. Eastern time.

The Caregiver Action Network Community on Facebook is a place where caregivers can connect and support one another.

4. Family Caregiver Alliance

The Family Caregiver Alliance offers assistance to family caregivers of adults with physical or cognitive issues, including Alzheimer’s disease. Some of their services, including providing information and resources to caregivers, are available to anyone. Other services, such as training on care conditions and direct care assistance, are available only to caregivers in the San Francisco Bay Area.

The Alliance offers both in-person and online support groups for families, partners, and other caregivers who want a safe space to talk about their caregiving experiences. Some groups are open to all caregivers of adults with neurological and other chronic, disabling conditions; others are specific to LGBTQ+ caregivers and young adult caregivers.

Caregivers from all walks of life can find articles on various aspects of caregiving and announcements about upcoming events in the Family Caregiver Alliance’s Connections e-newsletter. They can also learn about clinical trials focused on caregiving on the Participate in a Study page.

Stay up to date on Family Caregiver Alliance news, events, and resources by following them on Facebook, YouTube, and other social media sites.

5. Daughterhood

Daughterhood is a virtual organization for family caregivers that provides both practical information and social support. Online meetings called “Topic Circles” are an opportunity to learn more about a particular aspect of caregiving from a trained leader, while “Connection Circles” give members a chance to learn from one another and offer support. A podcast and a blog on caregiving topics provide additional chances for learning.

6. Lorenzo’s House

Lorenzo’s House supports young people and their families who have a loved one with younger-onset dementia. They host a variety of events and services, including a yearly Youth Summit, a free virtual and global event to help connect kids, teens, and young adults who are going through similar things.

Ongoing offerings include Lorenzo’s Light Club, a virtual hangout for children, teens, and young adults that meets multiple times a month; and Shine On, virtual sessions for children, teens, and young adults grieving the loss of a family member to younger-onset dementia.

Lorenzo’s House also offers Carepartner Connections, which matches care partner spouses, young adult caregivers, and those who have lost loved ones with someone who understands what they’re going through.

Keep up with Lorenzo’s House by signing up for their mailing list and following them on Facebook, Instagram, and other social media sites.

7. VA Caregiver Support Program

The VA Caregiver Support Program offers services to caregivers of eligible and covered veterans enrolled in the VA healthcare system. The program of general caregiver support services provides peer support mentoring, skills training, coaching, telephone support, online programs, and referrals to available resources. An enhanced program is available for caregivers of veterans who have a serious illness or injury and in-person personal care services. Visit the website to learn more about eligibility and how to apply for these programs.