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 causing the dementia that provide a safe, trusting environment, clear structure and a 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 Memory and Aging Center

FTD Adult Children Telephone Support Group

The UCSF FTD Adult Children Telephone Support Group is targeted to the adult children of people with a diagnosis of frontotemporal dementia. Individuals from across the nation can participate in a facilitated discussion by telephone. Please contact the group facilitator for the call-in number and any additional information. The support group is free.

Location:
This support group meets once a month via a toll-free telephone call. Callers do not have to be located in California or the San Francisco Bay Area to participate in the call. Callers from anywhere in the US are welcome. If you would like to participate, please contact the facilitator below for more information, including the toll-free number and passcode.

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

For more information:
Jamie Fong MS, CGC
(415) 476-8613
jfong@memory.ucsf.edu

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 nuclear 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 no reservations are needed to attend.

Location:
UCSF Kalmanovitz Library
530 Parnassus Ave, Room CL-221
San Francisco, California 94143

Availability:
Concurrent with the UCSF Memories in the Making® Art Program (below)
Monthly, on each second Thursday
2-3:30 p.m.

For more information:
Robin Ketelle, RN, MS
(415) 514-2058
rketelle@memory.ucsf.edu

Memories in the Making®

The UCSF Memory and Aging Center Memories in the Making® Art Program, under the guidance of an artist facilitator, offers individuals a means of self-expression through the process of painting and drawing. In this program, a person with diminished verbal and organizational skills can communicate using paints or pencil by recreating a memory on paper or canvas. The art sessions are facilitated by an artist and assistant who have extensive art backgrounds and knowledge of dementing illnesses.

Location:
UCSF Parnassus Campus (contact facilitator for specific room)
San Francisco, California

Availability:
Concurrent with the UCSF FTD Caregiver Support Group (above)
Monthly, on each second Thursday
1:30-3:30 p.m.
RSVP required

For more information:
Ashley Berhel
(415) 476-8101
aberhel@memory.ucsf.edu

Huntington Disease Support Group

The Huntington Disease Support Group welcomes affected individuals, at-risk individuals, family members, loved ones, friends, and caregivers. This support group is designed to offer support and education in a caring, safe, and relaxed environment.

The format is informal, with occasional guest speakers invited to share their knowledge of medical management, research, and resources. The support group is free and no reservations are needed to attend.

Location:
Westminster Church
240 Tiburon Blvd., First Floor
Tiburon, California 94920

Availability:
Monthly, on each third Thursday
7:30-9:30 p.m.

For more information:
Andrea Zanko, MS, CGC
(415) 476-9320
ZankoA@peds.ucsf.edu

Memory Disorders: Patient Education and Discussion Group

These meetings cover a variety of topics for patients and caregivers with memory loss. The meetings are offered in 2–4-hour sessions twice a year, with guest speakers on several topics. A reservation is required and you may attend one or both of the meetings.

Day 1—Biology of Dementia

• A discussion of normal memory and cognition.
• A review of the types of memory loss, how the diagnosis is made and what treatment options are available.
• A presentation about currently available medications used in the prevention and treatment of memory loss. A discussion of medications that can cause memory problems will also be included.
• A discussion for caregivers of patients with dementia about issues surrounding end of life, including hospice care, autopsy and legal considerations.
• Panel of experts in genetics, hospice and research will be available to provide information and answer questions.

Day 2—Strategies for Caregivers: Dealing with Memory Loss

• A review of strategies for caregivers dealing with patients with moderate to advanced memory loss including communication techniques and strategies to manage challenging behaviors such as wandering, resisting personal care.

Location:
San Francisco VA Medical Center
4150 Clement Street
San Francisco, California 94121

Availability:
Twice a year

For more information:
Mary Hulme, LCSW
(415) 221-4810 x2801
or
Michael Stick
(415) 221-4810 x3790

Caregiver & dementia support groups

If there is not a disease-specific support group in your area, try some of these groups that focus on dementia or caregivers. You can check with a social worker at your hospital, adult day care centers, your local Alzheimer's Association chapter or community organizations for recommendations. You can still find help and good ideas from people dealing with similar issues.

• The Alzheimer's Association is a voluntary health organization in Alzheimer care and support and a private, nonprofit funder of Alzheimer's and related dementias research.
• Northern California and Northern Nevada chapter
• The ARCH National Respite Network, sponsored by the Chapel Hill Training-Outreach Project, 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 Media Group provides information, support and guidance for family and professional caregivers. They produce Today's Caregiver magazine, the "Sharing Wisdom Caregivers’ Conferences" and the caregiver.com website which includes newsletters, online discussion lists, back issues of Today's Caregiver magazine, chat rooms and an online store.
• DailyStrength.org provides free, anonymous support groups for people to share their advice, treatment experiences and support.
• Defeat Dementia Facebook Group is an online support group using Facebook, a social media site which lets you talk with other group members, post photos, share events, etc.
• Family Caregiver Alliance (FCA) offers a wide array of services and publications based on caregiver needs at the local, state and national levels.
• State-by-state help for family caregivers
• Link2Care is a password protected online information and support program for California caregivers of an adult with dementia.
• The National Family Caregivers Association (NFCA) provides education, support and advocacy for caregivers across diagnoses, relationships and life stages. They maintain a network of current or former family caregivers at state and local levels across the United States.
• Well Spouse is a national, not-for-profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse support groups meet monthly.