Finding Support

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

The Dementia Family Caregiving Group provides a safe environment for families and friends of persons diagnosed with dementia to share their experiences and receive support from others coping with dementia. This group is co-sponsored by the Alzheimer’s Association and UCSF Memory and Aging Center. There is no charge; however, pre-registration with the Alzheimer’s Association is required.

Location
Online, using Zoom

Availability
Twice a month, on every second and fourth Tuesday
6–7:30 p.m.

Registration
To register for the meeting, please email Heather Gray or call 1.800.272.3900. Please indicate that you would like to register for the San Francisco UCSF Living with Dementia Support Group.

For more information, please contact Chloe France, MSW, at [email protected] or 415.514.8344.

FTD Adult Children Telephone Support Group

The UCSF FTD Adult Children Telephone Support Group is for the adult children of people diagnosed with frontotemporal dementia (FTD). Individuals from across the country are welcome to join the facilitated discussion by telephone. Please contact the group facilitator for the toll-free call-in number and any additional information. The support group is free.

Availability
Monthly, on each third Thursday
5–6:30 p.m. (Pacific Time)

For more information, please contact Jamie Fong, MS, CGC, at [email protected].

FTD Caregiver Support Group

The UCSF Frontotemporal Dementia (FTD) Support Group is designed to provide support and education to the families of people with FTD and related neurodegenerative diseases (such as progressive supranuclear palsy or corticobasal degeneration). This support group specifically addresses the needs of FTD caregivers whose concerns are often different than those of Alzheimer’s disease caregivers. The format is informal with open discussion, as well as occasional speakers. Caregivers and family members of UCSF and non-UCSF FTD patients are invited to attend. The support group is free, and registration is required. This group is co-sponsored by the Alzheimer’s Association and the UCSF Memory and Aging Center.

Location
Online, using Zoom

Availability
Once a month on the second Thursday, 12:30–2 p.m.

Registration
To register for the meeting, please email Heather Gray or call 1.800.272.3900. Please indicate that you would like to register for the San Francisco UCSF FTD Support Group.

For more information, please contact Lisa Kritikos, AGNP, at 415.514.1223 or [email protected]

Huntington Disease Caregiver Support Group

This Huntington Disease Caregiver Support Group is run by a clinical social worker and happens on the fourth Tuesday of each month in the East Bay.

Location
Sycamore Congregational Church
1111 Navellier Street
El Cerrito, California

Availability
Every 4th Tuesday
7–8:30 p.m.

For more information, please contact Natasha Boissier, LCSW, at [email protected].

Therapeutic Movement Class for Patients

The Movement Group welcomes individuals who are diagnosed with early-onset Alzheimer’s disease. Yoga interventions are modified to support the emotional and physical health of participants.

Location
Online, using Zoom

Availability
Once a week for 8 weeks

For more information, please contact Catherine Wang, ASW, MSW, at 415.353.3014.

Caregiver & Dementia Support Groups Beyond UC San Francisco

If there is no 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 and search Community Support Groups.
  • 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.
  • 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.