How to Find a Caregiver Support Group That’s Right for You

How can you find the right support group?

When first joining a group, Miller says, participants shouldn’t worry that they don’t know anything about caregiving. “That’s good. Others can share what they’ve tried,” says Miller, who says her group usually has four to eight people show up. “People in the group can say, ‘Been there, done that.’ It’s a learning process.”

If you don’t feel comfortable with one group, don’t give up. “Support groups are unique. They have personalities,” says Marvell Adams Jr., CEO of Caregiver Action Network. “Some people want detailed information, while others ... just want someone who understands.”

Some groups teach specific skills to improve mental health and well-being, says Dolores Gallagher Thompson, a clinical psychologist, researcher and professor emerita of psychiatry and behavioral science at Stanford University.

“Most caregivers have some degree of depression. Some have considerable depression, anxiety, frustration, guilt, feeling they did not do enough,” Thompson says. “At some point a caregiver is going to want to learn specific skills for stress management.”

“If I were seeking out an online or telephone group, I would ask a variety of questions about the content and focus and what to expect in terms of when I meet,” as well as what kind of training the facilitator has had, says Robert Glueckauf, professor of behavioral sciences and social medicine at Florida State University College of Medicine, who leads ACTS 2, a training and support group for Black caregivers of loved ones with dementia.

The important thing is to find a space where you can share with people who can relate and won’t judge. Knowing that you are not alone can make a world of difference.

“People need to understand if they try once and it’s not OK, they’re not a failure. Maybe they need to find a different group,” says Miller.

Who leads the group?

You may find both in-person and online versions of these meetings:

1. Peer-led groups. Often former caregivers, such as Miller, lead these groups. Typically, they encourage caregivers to open up about their emotions and experiences and try to find humor in difficult situations.
2. Groups led by trained facilitators. Social workers, psychologists or clergy members act as facilitators or teach techniques to handle communication or stress using, for example, cognitive behavioral therapy or mindfulness.
3. Online forums. Unlike the first two, these groups, often on a social media site such as Facebook, allow caregivers to drop by anytime. Many have moderators who may post a question to get discussion going or direct people to resources.

Types of caregiving groups to consider

• Condition-specific groups. There are support groups for people caring for loved ones with dementia, cancer, mental illness; neurodegenerative diseases like muscular dystrophy and amyotrophic lateral sclerosis (ALS); and many other conditions.
• Type of caregiver relationship. These bring together people in specific caregiving situations and relationships, such as veterans, spouses or adult children taking care of parents.
• Demographic affinity. These groups are good for someone who is looking for a specific cultural fit, for example, LGBTQ caregivers, Spanish speakers or young caretakers.
• Education groups. Invited speakers address topics such as elder law or dealing with Medicare and Medicaid. There are typically discussions among attendees after the presentation, through which caregivers still gain support.

How much do caregiving groups cost?

Ninety-five percent of support groups are free, according to Caregiver Action Network, although some organizations may charge a membership fee to join. Grants may be available to pay any fees.

Where to find support groups

Faith institutions, medical centers, disease associations, senior centers, social service agencies and employee support groups all offer help. Here are a few places to start your search:

General support groups

• The AARP Family Caregivers Discussion Group is a private Facebook group you can join.
• The Caregiver Action Network has an online forum, and you can try its telephone help desk.
• The Eldercare Locator, a service of the government’s Administration for Community Living, has a hotline at 800-677-1116 that can help find services in your area.

Alzheimer's and dementia

• The Alzheimer’s Association can help you find and join support groups.
• Best Programs for Caregivers has information on educational and support groups for dementia caregivers searchable by zip code.
• The Latino Alzheimer’s and Memory Disorders Alliance can connect you to support groups.

ALS

• The ALS Association has support groups for caregivers, friends, families and patients.
• ALS Together has online communities for caregivers and ALS patients.

Cancer

• The American Cancer Society can help find groups in your area.
• The National Cancer Institute has a searchable database of support groups for caregivers and patients listed by type of cancer.

Heart disease and stroke

• The American Heart Association offers online support groups for patients and caregivers handling strokes, arrhythmia and other heart issues. Connections to local groups are also available.

Mental health

• Courage to Caregivers offers help to caregivers supporting those with mental illness.
• Mental Health America has links to support for handling many types of mental health conditions.

Military

• The American Red Cross runs the Military and Veteran Caregiver Network, where you can connect with groups or a mentor.
• Hidden Heroes is a community for caregivers of injured or disabled service members and veterans.

Spouses

• The Well Spouse Association offers support to spouses caring for a chronically ill husband, wife or partner.