Support

Print Article Download PDF
Caregivers sharing at a meeting

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 for the adult children of people diagnosed with frontotemporal dementia. 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:
Jamie Fong MS, CGC
415.476.8613
Jamie.Fong@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.

In February and March, there will be some new opportunities to enrich your caregiving experience. UCSF Chaplain Judy Long will teach a course from 12:30–1:30 on sustainable caregiving and Robin Ketelle, RN, MS, will lead the traditional support group from 1:30–2:30. You have a choice of attending just Judy’s section, just Robin's section, or attending both. If you choose to attend Judy’s section, it is probably best to attend as many of the classes as possible, but this is not a requirement. We will let you know which rooms these meetings will be in, but they will be in the Sandler Neurosciences Center. Please contact Judy directly if you have questions about the content of her class.

Location:
UCSF Neurosciences Clinical Research Unit (NCRU):
Sandler Neurosciences Center
675 Nelson Rising Lane, Room NS 130/140
San Francisco, California
map
Please wait in the reception area until called.

Availability:
Twice monthly on the second and fourth Thursdays, 12:30–2 p.m.

For more information:
Robin Ketelle, RN, MS
415.514.2058
Robin.Ketelle@ucsf.edu

FTD Caregivers Support Group: Sustainable Caregiving Classes

For February and March, our caregiver support meetings will be two hours long (12:30–2:30), so we have time for a class on sustainable caregiving as well as our regular check-in. You are welcome to attend either or both (same room) sessions.

Time:
12:30–1:30: class on sustainable caregiving
1:30–2:30: our usual check-in group

Join us to learn evidence-based skills to help make your caregiving more sustainable over time, even in the midst of challenges.

Dates:
Thursdays, 2/9, 2/23, 3/9, 3/23

Classes will be experiential rather than lecture, so you will practice skills you can take with you. Research studies will be available for those who want them.

Topics:

  • Somatic grounding
  • Directed attention/mindfulness in daily life
  • Mindful self-compassion
  • Cultivating and strengthening compassion
  • Resilience training

Sessions will focus on one or more of these elements.

Judy Long is a Stanford Certified Compassion Cultivation Training (CCT) Instructor. She also completed training and teaches Mindful Self-Compassion (MSC), Mindfulness-Based Stress Reduction (MBSR), and Joan Halifax, PhD’s, GRACE intervention. Judy is a chaplain with UCSF’s Parkinson’s Disease Supportive Care Clinic and Pulmonary Quality of Life Clinic, and provides palliative care with a deep commitment to care for caregivers as well as patients. You can contact Judy at Judith.Long@ucsf.edu.

Mild-Cognitive Impairment (MCI) Care Partner Support Group

The MCI Care Partner Support Group provides a safe environment for families and friends of persons diagnosed with mild cognitive impairment to share their experiences and receive support from others coping with MCI. Walk-ins welcome. Free of charge. This group is co-sponsored by the Alzheimer’s Association and UCSF Memory and Aging Center.

Location:
UCSF Mission Bay Campus:
Sandler Neurosciences Center
675 Nelson Rising Lane, Room NS140A
San Francisco, California
Participants should check in with the security guard, enter through Room 130, and have a seat in the waiting room.
map

Availability:
Monthly, on each second Tuesday (please note that the April meeting will be on April 18 and in May we will return to the normal meeting date, May 9)
6–7:30 p.m.

For more information:
800.272.3900
www.alz.org


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

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

For more information:
Andrea Zanko, MS, CGC
415.476.9320
Andrea.Zanko@ucsf.edu


Huntington Disease Caregiver Support Group

This Huntington Disease Caregiver Support Group is run by one of the MAC's clinical social workers and happens the fourth Tuesday of each month in the East Bay.

Location:
1111 Navellier Street
El Cerrito, California

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

For more information:
Natasha Boissier, LCSW
415.476.2904

Early Onset Alzheimer’s Disease Support Group

Our support groups have been designed for individuals who have been diagnosed with Alzheimer's disease and their caregiver or significant other. Criteria for participation include:

  • A diagnosis of Alzheimer’s disease
  • Received the diagnosis before age 65
  • In the mild stage
  • Have a significant other/caregiver who is willing to participate in the caregiver support group (*optional)

Early Onset Alzheimer’s Group
The purpose of the group for those with Alzheimer’s disease is to share thoughts and feelings with others who are going through a similar experience.

Caregiver Group
The purpose of the group is to provide support, validate the difficulties associated with caregiving, address the emotional challenges, and implement coping skills. Additionally, we will provide education on neurodegenerative diseases and discuss new developments and research in the field.

Location:
UCSF Memory and Aging Center Clinic:
1500 Owens St.
3rd floor Neurology Clinic
San Francisco, California
map

Availability:
Groups occur twice a month

For more information, please contact:
Cathy Wang, ASW, MSW
Catherine.Wang@ucsf.edu
415.353.3014

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.
  • 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.
  • 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.
  • 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.