Frontotemporal dementia: ‘I don’t ever want to be looked at by John as a caregiver, I want him to see me as his partner’

Cindy McCaffery provides support to her husband John who was diagnosed with frontotemporal dementia more than a decade ago, at age 48. Over the years, she has come to understand the importance of active living, and its apparent role in slowing down brain disease inspired her to start YouQuest — a not-for-profit organization that provides a day program to people under the age of 65 who are affected by dementia.

“A neurologist told me about a support group that was formed specifically for caregivers to people living with young-onset dementia, so I turned to that group to learn more. Sometimes, I’d learn too much, and it made me not want to go back. Somewhere along the process, we met a dementia care therapist through Alberta Health Services and working with her has been so helpful. People see John and they say that he looks great, he speaks so well, he drives, but they don’t really understand that brain disease is a progressive illness — that lack of awareness and disbelief has surprised me. Usually, I try to keep it positive with our family and friends, and I save my gripes for the therapist.”

Read more in Healthing.

Written by External Article
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