“When I’m leading a support group I often find that people don’t want to hear from the professional -- they want to hear from their peers. After all, the real experts are the people living the experience. It’s the peer-to-peer support that’s magic.”
That’s Karen Johnson, Director of Alzheimer Outreach Services (AOS) of McCormick Home in London, Ontario. AOS runs a variety of caregiver support programs for people caring for loved ones with Alzheimer and other dementias. Johnson, a social worker by trade, has led many of them, and she believes passionately in the value of getting advice and support from other caregivers.
She points out that being a caregiver can be a very isolating experience. Social circles often shrink in the face of a serious diagnosis. Caregivers may lack the knowledge they need to deal with new challenges. At the same time they are dealing with their own grief. Stigma and even embarrassment can also create distance from others. Caregivers often think they can deal with things on their own and are too proud to ask for help from friends or family.
Although many people resist the idea of a support group at first, they often experience a sense of relief when they join in, says Johnson. “You know you’re not alone, you can compare experiences, you can get ideas, and you can express some of the challenging feelings that come with being a caregiver.”
In addition to in-person meetings, peer-to-peer support can be available at a distance. For example, AOS has a support group for caregivers of non-Alzheimer dementias that is now shared across southwestern Ontario via teleconferencing.
Johnson knows AOS programs are successful when participants find the stress of caregiving becomes more manageable. She is especially pleased when they begin to implement coping strategies, such as calling their local Community Care Access Centre or signing up for a day program. Participants in AOS programs often meet with one another informally and develop bonds that last far beyond the course of the program.
Johnson’s words of advice to caregivers? “There is still a life to live, and it can be lived well. Getting support from other caregivers helps you to cope, to live well, and to find the joy in caregiving. You look at them and think, “’They’re still here -- I can do this too.’”
To find a caregiver support group in your community, use the Caregiver Exchange Find Services tool. Put in your postal code, and then explore the “Care for the Caregiver” listings.