Sharing experiences is vital to care partner well-being

Hashing out a conundrum over coffee or giving a friend a call can help the stickiest of problems, simply by sharing and feeling heard. The power of connecting is being recognized in the mental health community through formal peer support programs.

Meghan Reid, the recovery college and peer support lead at the Canadian Mental Health Association (CMHA) Calgary, notes that peer support works well in conjunction with other forms of mental health support. “[Peer support] establishes equality in the caring relationship where the individual can learn and benefit from the similar experiences that others have gone through,” says Reid.

In 2008, Alberta Health Services established a program focused on peer support for people living with dementia and their care partners. Created by Silver Threads in Victoria, B.C., Memory P.L.U.S. (Practice, Laughter, Useful Strategies) is a 12-week program designed to both inform and create a social space — care partners especially are given the opportunity to connect and share their experiences with one another.

“Our caregivers refer to the other people in the group as family,” says Charlene Retzlaff, a social worker and caregiver support with the program. “There’s [a] sense of connectedness. When someone’s going through a crisis, they rally behind them.”

For Norma Whitney, the peer support she found in Memory P.L.U.S. became an integral part of her support system while she was caring for Donald Cranston, her late husband. Cranston was a busy petroleum engineer who worked overseas, but whenever he was off work, the couple would head out to Vancouver Island to spend time together on their sailboat. When Cranston noticed that he could no longer do tasks that used to come easily, the couple began a whirlwind of doctor’s appointments and visits with specialists — Cranston received a formal diagnosis of Alzheimer’s in early 2013.

“We were both kind of shocked at the diagnosis. We had no idea what we were up against,” says Whitney.

After receiving a visit from occupational therapist Beverly Hillman, who runs the Memory P.L.U.S. program, an initially sceptical Whitney agreed to do the program with Cranston. “It didn’t take me long to realize that I needed that support group. It was so important to me,” says Whitney. “It probably was the one thing that helped me get through every new chapter where something else changed.”

Care partners often put their own self-care at the bottom of an extensive to-do list. In Reid’s experience, isolation is something experienced by a lot of them. “[Peer support] really provides an opportunity for carers to connect and to feel validated,” says Reid. “It reduces burnout [and] they become more aware of resources. Whether that be social networks or support groups online that are informal or different coping and wellness strategies.”

Whitney says that she and the other care partners she met at Memory P.L.U.S. try to get together once a month to give each other comfort, support and a shoulder to lean on. “Our own lives had [been] put on hold for such a long time that even just trying to get together with a bunch of other ladies who all understood what was going on and how you felt was a necessary move for us,” says Whitney.

For other care partners of people living with dementia, Whitney stresses the importance of self-care and participating in a support group. “There’s nothing more important than knowing you’re not alone out there.” [ ]

Email family.caregivercentre@ahs.ca to register for Memory P.L.U.S.