Where to Find Support for Dementia Caregivers

by Sarah Ellis Health Writer

Being a dementia caregiver is like a full-time job. As your partner or loved one begins to lose their memory, you are the person tasked with helping them retain some sense of normalcy—all while dealing with your own grief. “As a loved one of someone who is living with dementia, there’s a great sadness,” says Cynthia Kent of Tyler, TX, whose husband Don has Lewy body dementia. Read on to find out why it’s so important for caregivers like Kent to prioritize their own needs, plus learn about some of the resources that will do just that.

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Lean on People Close to You

“Alzheimer’s disease [and dementia] impacts the entire family—both immediate and extended members,” says Monica Moreno, senior director of care and support for the Alzheimer’s Association in Chicago. The same goes for other forms of dementia. “It’s important for people living with the disease and their family caregivers to establish a strong, reliable care team composed of family members, friends, neighbors, medical professionals, and community members that they can turn to for support throughout the course of the disease.”

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Support Groups Help…Big Time

The more support you can get, the better, so it helps to cast a wide net. Support groups for caregivers exist across the country. “We have good evidence [about] just how valuable support groups can be for caregivers in helping to improve their well-being and helping to address their worry, anxiety, and depression,” says Angela Lunde, neurology associate and co-investigator of the Outreach, Recruitment and Engagement Core in the Mayo Clinic Alzheimer’s Disease Research Center in Rochester, MN. The hardest part is knowing where to start—so we’re doing the work for you.

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The Alzheimer’s Association runs an online network called ALZConnected, a free community for people living with Alzheimer’s and their loved ones. The caregivers’ forum is full of stories and advice from people in your same position, taking care of someone with the disease. It’s easy to join and easy to navigate, with hundreds of threads to read and contribute to. The Alzheimer’s Association also has a navigator to find support groups in your area, whether they meet online or in-person.

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LBD Caring Spouses is a group email thread of over 1,300 members. These are spouses of people living with Lewy body dementia or Parkinson’s disease – the two conditions also most highly linked to psychosis episodes like hallucinations and delusions. The group shares hundreds of messages per month and has been operating since the early 2000s. LBDA also has a Facebook support group for spouses and partners.

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The Family Caregiver Alliance is a national organization for caregivers of people with different chronic health conditions, including dementia. Along with policy and advocacy work, they also offer a resource called Smart Patients, which provides access to a community, information on treatments and clinical trials, and personal stories from other patients and their loved ones. FCA also has a support group specifically for the LGBT community, as well as Spanish speaking support groups.

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Run by the U.S. Department of Veteran’s Affairs, the National Caregiver Support Line is open six days a week for veterans and those who care for them. You can call to find out care options, find a professional to help you or your loved one, or just listen to whatever you’re going through. It’s not specific to dementia but can provide support for those affected by it, as well as other chronic health conditions your family may be affected by.

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Caregiver Action Network (CAN)

This membership group for family caregivers has online guides and a phone help desk of experts available seven days a week. You can also reach out to them via email or online chat for answers to your questions, as well as joining their online forum to talk with other caregivers. For advice on caregiving during the pandemic, check out CAN’s COVID-19 caregiving guide, which includes a screener to help you identify mental health issues in yourself or your loved one.

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If you are caring for someone with frontotemporal dementia, this organization is here for treatment resources, education, and support. The website includes a map listing local support groups all over the country, many of which are meeting over Zoom right now. AFTD also has telephone support groups for those unable to meet in person or on video, as well as an online forum and caregiver Facebook group.

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This non-profit group is all about providing education to end stigma and misperceptions about people with dementia. Caregivers can join this alongside their dementia-affected partners. “One of the things I really like about Dementia Action Alliance is that they are fundamentally operated by people living with dementia themselves,” Lunde says. “I think that is so important to be able to get the lived experience view.” DAA runs weekly discussions on Zoom to cultivate friendship and community among dementia patients and their caregivers.

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This group is massive—23,000 members and counting! It was created by a patient with early-onset Alzheimer’s, and it includes patients, caregivers, family members, and dementia care professionals. The group’s description characterizes it as “a safe, comfortable place to find real-time support for those touched by dementia related diseases.” Any time of day, other caregivers will be there to provide advice and encouragement for you.

Sarah Ellis
Meet Our Writer
Sarah Ellis

Sarah Ellis is a wellness and culture writer who covers everything from contraceptive access to chronic health conditions to fitness trends. She is originally from Nashville, Tennessee and currently resides in NYC. She has written for Elite Daily, Greatist, mindbodygreen and others. When she’s not writing, Sarah loves distance running, vegan food, and getting the most out of her library card.