En español | If caring for a loved one leaves you frustrated and angry at times, that's normal — but you don't have to go it alone.
A good caregiver support group can be a lifeline, providing a place — in person, on the phone or online — to share feelings confidentially, make friends, get help navigating the health care system and learn from others who have walked a similar path. Amid the COVID-19 pandemic, many groups have moved on to video meeting platforms like Zoom.
The benefits for family caregivers are well documented: “Decades of research show that social support helps people cope,” says psychologist and AARP caregiving expert Barry J. Jacobs. “Caregivers often can't speak openly with family members about their emotional reactions, and a support group provides a relative degree of anonymity."
There are support groups run by faith institutions, medical centers, disease associations, adult day care centers, social service agencies, and by businesses for their employees, among other entities. Some are for people caring for loved ones with specific medical conditions; others aim to serve caregivers in general. And help from caregiving communities is widely available online.
Types of support groups to consider
Condition-specific groups. There are groups for people caring for loved ones with Alzheimer's and dementia; cancer; heart disease and stroke; mental illness; neurodegenerative diseases like muscular dystrophy and ALS; and many other conditions. Check the websites of major disease charities or contact their chapters to find support groups near you.
Groups targeting different kinds of caregivers. These might bring together people in specific caregiving situations and relationships, such as military caregivers or adult children caring for elderly parents. There are also groups based on demographic affinity — for example, for LGBTQ caregivers, Spanish speakers or millennials.
Support groups: Overcoming objections
AARP columnist, psychologist and caregiving expert Barry J. Jacobs offers insights on why some caregivers shy away from support groups.
Of the thousands of caregiver support groups run by churches, senior centers, hospitals and disease-specific organizations, too few fully achieve their potential. What prevents more such groups from succeeding?
It has to do, in part, with the reluctance of the caregivers themselves. Here are some typical caregiver reactions to referrals to support groups and possible ways of seeing things differently.
"I don't feel comfortable talking in groups." There's no requirement for group members to pour out their hearts. Many people benefit simply from listening to other people's stories and perspectives, and from learning new approaches to their own caregiving situations.
"I'm doing fine. I don't need support." This may be true for a caregiver at a given time. That doesn't mean it will remain true as caregiving goes on for months and years. Support groups give caregivers ideas for sustaining themselves in order to continue coping well.
"How can I get to a support group when I'm so busy taking care of my loved one?" Many organizations try to address this objection by providing simultaneous caregiver and care-recipient groups or activities in different rooms.
Another convenient alternative is online support groups that caregivers can access from the comfort of their own homes, as their schedule allows.
Peer-led support groups. The Well Spouse Association, a national support organization for people caring for spouses, facilitates a network of support groups around the country, all run by volunteers. “We've been in their shoes, and we can share,” says Dorothy Saunders, the association's former copresident and a caregiver for more than 40 years. “Someone may be thinking, I'm really losing my patience. I'm always at his beck and call. That's normal.”
Groups led by a trained facilitator. A social worker, psychologist or member of the clergy can help keep the discussion on track and stop one person from monopolizing the conversation. Facilitators can also steer participants toward useful educational programs with elder law or legal aid attorneys, adult day care providers and other professionals.
Online and telephone caregiver groups. These groups can offer priceless support to people who can't travel to a face-to-face meeting (or who prefer not to during the pandemic) or need to talk to someone during off-hours. Though you give up opportunities for local networking and face-to-face contact, research has found that online groups provide the same positive effects as in-person groups when it comes to emotional support and validation.
Support groups for young caregivers. Children are an often-overlooked subset of the family caregiver population. There are more than you may suspect: The 2020 “Caregiving in the U.S.” report from AARP and the National Alliance for Caregiving estimates that more than 3.3 million people under age 18 in the country are providing care to an adult recipient.
Caregiver education groups. Some caregivers may worry that the very idea of accepting “support” means others will judge them to be struggling. A more appealing option might be “caregiver education groups,” at which invited speakers address relevant topics, such as stress management or dealing with Medicare. There are typically discussions among attendees after the presentation, through which caregivers still gain support.
Tips for finding a group that fits
Get out of your comfort zone. Caregiver support groups are underutilized, often because people think they don't have the time or feel self-conscious about speaking about personal subjects with strangers. As Jacobs puts it, “There are a lot of introverts in this world.” Try to push yourself through your resistance and take the plunge.
Search online. Enter your zip code or city at the federal government's Eldercare Locator to find the nearest Area Agency on Aging and other state and local services for seniors and caregivers. Disease organizations such as the Alzheimer's Association and CancerCare often offer tools to find in-person and online support.
Find out what the format is. Does the group have a facilitator? Some have a trained leader; others don't. You may prefer one approach over the other. And ask about the group's confidentiality policy. You'll want one that follows Las Vegas-style rules: What's said in the group stays in the group.
Know that most groups are free to join. “I would be wary if a fee is being charged,” says John Schall, chief executive officer of Caregiver Action Network, a national organization working to improve the lives of the nation's 53 million unpaid family caregivers. Some, though, may ask you to join their organization and pay dues. That's the case with the nonprofit Well Spouse Association, which charges membership dues of $30 a year but offers reduced fees to caregivers with financial hardships.
Keep an open mind. Don't dismiss a support group just because it's not perfectly targeted to you, especially if you don't have many options in your area. (And don't assume you need to belong to a congregation or have sought care at a medical center to join a caregiver group there. Call first if you're concerned, but most likely they'll welcome you.) Most caregivers face similar challenges — emotional stress, financial pressure and navigating the health care system, to name a few. A well-run, general caregiver group may meet your needs just fine.
The important thing is to find a space where you can share stories, feelings and advice with people who can relate and won't judge. Knowing that you are not alone can make a world of difference.
A sampling of caregiver support groups
Caregivers can find peer support in all sorts of settings, from meeting rooms at community centers to Facebook groups and online forums with thousands of active users. Here are some places to connect with support groups serving particular caregiving communities or the larger caregiver population.
Alzheimer's and dementia
- Alzheimer's Association
- Alzheimer's and Dementia Resource Center
- Dementia Caregivers Support Group
- Latino Alzheimer's and Memory Disorders Alliance
- Memory People