Caregiver support groups: where to find one and what actually happens there

Most caregivers resist support groups for the same reason they need them: no time, and a belief that talking will not change anything. The research says otherwise. Caregivers who attend support groups report less depression, less sense of burden and better coping, and the effect is largest for people caring for someone with dementia. Nothing about the group changes the disease. It changes how alone you are with it.

• General caregiver groups, for anyone caring for an older adult, often run by Area Agencies on Aging, hospitals, senior centers and faith communities. Good when the shared experience is caregiving itself, not the specific disease.
• Condition-specific groups: dementia, Parkinson’s, cancer, stroke, heart failure, COPD, ALS. The advice is more precise and the understanding deeper. The Alzheimer’s Association alone runs thousands.
• Relationship-specific groups: adult children caring for parents, spouses, long-distance caregivers, working caregivers, men who are caregivers, sandwich-generation caregivers. Sometimes the relationship matters more than the diagnosis.
• Online groups: scheduled video meetings, or forums and message boards you visit when you can. The Alzheimer’s Association’s ALZConnected, the Family Caregiver Alliance’s online groups, and Caregiver Action Network’s forums are established and moderated.
• Telephone groups: scheduled calls, often through the Well Spouse Association, disease organizations and some Area Agencies on Aging, for people who cannot leave the house.
• Grief and post-caregiving groups, for after. Caregiving does not end when caregiving ends, and hospices usually run these for families they served.

A typical meeting has six to fifteen people and a facilitator, who may be a social worker, a nurse or an experienced caregiver. There is a check-in, in which each person says briefly how the month has been. Then conversation, sometimes around a topic, more often around whatever someone brought in. People give each other practical information (this agency is good, that form is impossible, here is what worked when Dad refused to bathe) and permission (you are allowed to be angry, you are allowed to take a weekend). Nobody is required to speak. Most people cry at some point, and nobody minds.

A support group is not therapy, and if you are experiencing depression, anxiety, or thoughts of harming yourself or the person you care for, you need more than a group. Medicare covers mental health care for your parent; your own insurance or employee assistance program covers yours, and many Area Agencies on Aging offer free caregiver counseling. A group is also not a substitute for practical help. If what you need is someone to take Wednesday afternoons, the group can tell you where to find that, but the group itself will not.

• Ask whether the group offers respite care during the meeting. Some hospital and Alzheimer’s Association groups do.
• If you cannot leave, choose an online or telephone group. The evidence for their benefit is nearly as strong.
• Put it in the calendar like a medical appointment. It is one.
• Tell one sibling or friend that you are going and why. Accountability helps the first few times.
• Bring one question. It gives you a reason to speak and a reason to come back for the answer.