Support groups offer a great opportunity to share with others, and a good place to ask questions, get information about local resources, and learn new ways to manage the challenges of living with dementia.
Whether you are newly diagnosed, are in the early stages of the disease that causes dementia, or are caring for a person with dementia, finding a community that meets your needs
What matters most is finding a community that meets your needs. This article provides information on dementia support groups so that you can connect in a way that works best for you.
Membership fee: FreeStructure: In-person, video, and online meetingsDetails: Support groups and meetings are offered in several locations, there’s an online community, and virtual meetingsThings to consider: Some local chapters are not currently phone or online support groups
The Alzheimer’s Association addresses the needs of people with all types of dementia, not just Alzheimer’s disease. In-person and online meetings offered by the group are available at a variety of locations across the country.
Offerings include peer- and professionally led groups for caregivers, people with dementia, and others dealing with Alzheimer’s disease (and other forms of dementia). There are also groups available for those with younger-onset and early-stage Alzheimer’s disease.
The Alzheimer’s Association provides in-person meetings, online groups, video support groups, gatherings that meet over the phone, and more. All options are free of charge.
Membership fee: Most groups are free, some may collect voluntary donationsStructure: Online, phone, video conferencingDetails: Offers support groups specifically for spouses and has active Facebook support groups. Things to consider: Support groups are not available in all states
Lewy Body Dementia (LBD) is a condition involving abnormal protein deposits in the brain called “Lewy bodies.” These deposits affect brain chemical levels, which may result in abnormal thinking, movement, and behavior, as well as mood disorders.
Lewy Body Dementia Association (LBDA) offers several types of virtual groups, internet discussion forums, and more. Its Facebook support group offers virtual, (Zoom-based) meetings for anyone living with LBD—even those who are not yet diagnosed but are seeking information.
If you’re seeking a combined support group for people diagnosed with Lewy body dementia and their care partners, Living Together with Lewy is another Facebook group that is available. This one aims to help those who are newly diagnosed, people with early symptoms of the condition, and others who are seeking advice around a possible diagnosis.
LBDA also offers an online support group if you have a spouse with Parkinson’s disease dementia (PDD) or Lewy body dementia (LBD): LBD Caring Spouses.
Membership fee: FreeStructure: Email-based discussion group, online, and video (Zoom) Details: Support group specifically for family caregivers, phone support group in Spanish, and LGBTQ+ support groups are availableThings to consider: No in-person meetings offered right now, and Young Adult Caregivers Support Group open to Bay Area participants only.
Family Caregiver Alliance is a free, online community offering a support group—which is not moderated—for family members, partners of people with dementia, and caregivers of adults with chronic, debilitating conditions such as Alzheimer’s disease, stroke, traumatic brain injury, and more.
You can send and receive email messages to interact during group discussions. Family Caregiver Alliance also offers an LGBT Community Support forum for gay, lesbian, bisexual, or transgender caregivers.
In the San Francisco area, the Family Caregiver Alliance also offers one in-person meeting specifically for Spanish-speaking caregivers, and the other is a general meeting for caregivers.
Membership fee: Free (fee for certain classes)Structure: In-person and online support groups, fitness classesDetails: Offers a network of local chapters and virtual events, resources created specifically for veterans and first responders, and fitness and dance classes on YouTube and via Zoom. Things to consider: There are minimal fees for some classes.
The American Parkinson’s Disease Association (APDA) provides a variety of support groups and resources for Parkinson’s disease patients and their family members and caregivers, everything from a support forum called Smart Patients to an Ask the Doctor section aimed at answering any question or concern you may have.
The APDA offers a nationwide search page to find local, in-person support group meetings for Parkinson’s patients and their caregivers. Fitness classes for people with Parkinson’s are available nationwide and, although there’s a fee involved, the APDA can help those who need financial assistance.
There are also resources for those with early-onset Parkinson’s, veterans with Parkinson’s, Spanish speakers, and more.
Membership fee: FreeStructure: Virtual meetings, one-on-one mentoring online activitiesDetails: The group is led by mentoring volunteers who have been diagnosed with dementia, online activities, and 46 gatherings per monthThings to consider: There are currently no in-person meetings
Dementia Mentors is an online support resource offering private, one-on-one mentorship and video chats to allow people with dementia the chance to socialize. Mentors are volunteers who have been diagnosed with dementia themselves.
The primary goal of Dementia Mentors is to offer a social outlet via a supportive environment for those living with dementia. Mentorship can include fielding questions about day-to-day living and coping with dementia, sharing experiences, and other topics.
The organization also offers a service called a Memory Café, which is an online social gathering for people with dementia. There are about 46 meetings every month at various times during the day to serve people living in different time zones.
Membership fee: FreeStructure: Social media platformDetails: There’s a very large community in which people with dementia interact with others, caregivers, loved ones, and family members, and only members can see postsThings to consider: A Facebook account is required
There are many Facebook support groups that offer private, social media forums for people with dementia and their caregivers. Memory People is one group that has more than 23,500 members Memory People welcomes people living with dementia, along with their caregivers, family members, and other loved ones.
Topics of discussion include everything from sharing pictures of a recent holiday to dealing with some of the common symptoms of Alzheimer’s disease such as sleep problems.
Group administrators, who will send you an email response message (a friendly welcome that will tell you more about the group and allow you to view the comments from other group members), will need to submit their approvals.
Note: Once you are a group member, your posts will only be seen by other members, not the general public.
Membership fee: Free for support groups; around $425 for summer youth camp Structure: In-person and virtual meetings, day campsDetails: There are several programs available, support groups for family and friends, and day camps to help kids gain knowledge, coping skills, and offer peer support. Things to consider: Available only for people with dementia, their caregivers, and family members in Wisconsin.
The Alzheimer’s & Dementia Alliance of Wisconsin offers supportive services, events, educational components, and sharing opportunities for people with dementia, their caregivers, and family members.
There are monthly social gatherings called “memory cafes,” aimed at people with memory loss, mild cognitive impairment, early Alzheimer’s disease, and other types of dementia. For those with mild memory loss, the memory enhancement program, Meeting of Minds, features storytelling and artwork discussion groups.
In-person meetings are sometimes offered as well, with gatherings held in various counties throughout Wisconsin.
The Alzheimer’s & Dementia Alliance also offers summer camps and local gatherings for teenagers and children who need peer support. Among the topics they’ll learn about are coping skills.
Most support groups are free of charge and many offer sessions, meetings, or “memory cafes” (social gatherings that allow people experiencing memory loss and a loved one to connect) virtually, so you can receive and give support from the comfort of your own home.
A moderator welcomes new members, makes group announcements, and sends out information about the group (i.e. welcome email messages). After the moderator opens the meeting, each member of the group is usually given an opportunity for an introduction. The groups are structured to give members an opportunity to interact in their own way. Often, guest speakers are asked to join.
