Caregivers of persons with dementia face difficult challenges. One of the most valuable benefits of being in a support group is learning about coping skills and helpful resources from your peers. Every person’s experience is so different, yet there are similarities that often only other caregivers can relate to. Many caregivers find new friends and social contacts in support groups.
Why Join a Support Group?
Talking to other people with similar experiences can help reduce your stress, frustration and isolation. Plus, other caregivers often have helpful advice on what worked for them. A support group can provide a safe place to express your own needs and deal with painful emotions, including aggression, anger, mourning and guilt. It is a relief to know you’re not alone.
The best groups for caregivers tend to be groups focused on the specific disease that is causing dementia and provide a safe, trusting environment with a clear structure and facilitator. That said, your area may not have a disease-specific support group, yet you might find other caregivers like you in a dementia-related support group. Try the groups that appeal to you and meet your needs. It might help to talk to the facilitator or leader before the first meeting.
Support Groups at the UCSF Memory and Aging Center
Dementia Family Caregiving Group: Living with Dementia
Early Onset Alzheimer’s Disease Dyad Support Group
FTD Adult Children Telephone Support Group
FTD Caregiver Support Group
Huntington Disease Caregiver Support Group
Therapeutic Movement Class for Patients
Caregiver & Dementia Support Groups Beyond UC San Francisco
If there is not a disease-specific support group in your area, you can try some of these groups that focus on dementia or caregivers. You can also check with a social worker at your hospital, adult daycare centers, your local Alzheimer’s Association chapter or community organizations for recommendations. You can often find help and good ideas from people dealing with similar issues.
- The Alzheimer’s Association is a voluntary health organization supporting caregivers and people living with Alzheimer’s disease and related dementias. It is also a private, nonprofit funder of Alzheimer’s and related dementias research. Explore the Northern California and Northern Nevada chapter.
- The ARCH National Respite Network includes a search function to help caregivers and professionals locate respite services in their community and advocacy for respite in policy and programs at the national, state and local levels.
- Caregiver Action Network (CAN) provides education, peer support and resources to family caregivers across the country free of charge.
- CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends.
- CJD Support Network provides emotional and practical support for all strains of CJD and for those who are at greater risk of CJD.
- Family Caregiver Alliance (FCA) offers a wide array of services and publications based on caregiver needs at the local, state and national levels. Find state-by-state help for family caregivers.
- Kaiser Permanente Dementia Caregiver Support Group – East Bay is sponsored by Kaiser Permanente, Oakland Medical Center Medical Social Work Dept and the Alzheimer’s Association. Kaiser membership is not required.
- LGBT Aging & Abilities Support Network (LAASN) provides supportive services that address social isolation as well as emotional, behavioral and health challenges faced by lesbian, gay, bisexual and transgender seniors and adults with disabilities.
- National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving.
- Openhouse and Caregiving Support for San Francisco Bay Area lesbian, gay, bisexual and transgender (LGBT) older adults
- SAGE is a national organization that offers supportive services and consumer resources to LGBT older adults and their caregivers, advocates for public policy changes that address the needs of LGBT older people, provides education and technical assistance for aging providers and LGBT organizations through its National Resource Center on LGBT Aging, and cultural competence training through SAGECare.
- Well Spouse provides peer support and education about the special challenges and unique issues facing “well” spouses every day.