One way to tackle the challenges caregivers face is to join a support group specifically geared to those taking care of loved ones. Peer-led groups not only reduce social isolation and provide psychosocial support; for those facing similar health issues, they also provide practical advice about self-care and how to navigate the health system, according to a 2022 study in the journal Family Practice.
Greg Link, director of the office of supportive and caregiver services in the Administration for Community Living, agrees: “Support groups provide much-needed opportunities for social and emotional connectedness and are important sources of information and education about one’s role as a family caregiver.”
What should you expect in a support group?
Caregiving groups may meet in person at hospitals, libraries, community centers or cafés. Or they may meet virtually, online.
“We ask questions like, how are you doing? What’s worked this month? What hasn’t worked?” says Bev Miller of Arlington Heights, Illinois, a former teacher and caregiver who has led support groups for the Alzheimer’s Association since 2010.
People come to support groups to learn tips, coping strategies, empathies. “They learn they shouldn’t explain or argue. Instead, divert. Give them ice cream,” says Miller, whose group’s members are handling loved ones with dementia.
But they also discuss weighty issues such as whether to put their loved one in a facility.
Her monthly 90-minute support group session is free and meets over Zoom. “People often say they feel better . . . that other people understand what they’re going through,” she says. “We can’t fix their problem, but they know they’re not totally alone.”
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.
Click here to read more about Bev's experience and finding the right support group for you.
Comments