Ken Capron is an intelligent man. I got that right away when we met recently. His gaze was strong and focused and he was quick and articulate when he answered my questions. I only knew he had dementia because he told me ahead of time. I had the same experience with Donna Beveridge. Since her diagnosis, she’s even become an accomplished artist and is chronicling her life with dementia in watercolor.
Ken got in touch with me to see if I’d be interested in writing something for Catching Health about the Memory Cafés he and Donna had organized in Portland and Biddeford. A Memory Café is simply a place people with memory loss can go for a cuppa and talk about whatever happens to come up without feeling awkward or stigmatized. Care partners, family and friends, and health care professionals are also welcome. “We’ve had conversations about using theater as an awareness tool for dementia; how some people have dealt with the loss of the use of their car; about Alzheimer’s symptoms; and much more,” says Ken.
I’d never heard of Memory Cafés before. Ken says they’re popular in England. A side note — in England the government pays for them out of the health care program. In some cases, Ken told me, the government even builds the facility and pays for staff and supplies so that people can have the cafés on an ongoing basis. Interesting.
The original Memory Cafés were established as a way people who were concerned about dementia for one reason or another could meet informally with social workers and health care providers. It was the social aspect that became the real hook says Ken.
You’re probably wondering about Ken’s and Donna’s dementia. They’ve been fortunate because their symptoms have progressed fairly slowly.
“About 10 years ago I was on a business trip to Long Island. I remember being there but I don’t remember the trip down and back. I used to read maps really well and I struggled. I had four maps trying to figure out where I was going. It was really unusual. I was also experiencing trouble getting words out, which is something I think a lot of Alzheimer’s and dementia-related people have.”
Ken saw his doctor and had a complete workup. It turns out he has central sleep apnea. His brain doesn’t send the right signals to the muscles that control his breathing. During a sleep study he woke up gasping for air 51 times an hour. Each time, his brain was oxygen deprived. Even if only for a second the loss is cumulative and kills his brain cells. Most people with sleep apnea have the obstructive kind, which prevents them from breathing because something is obstructing their upper airway.
The usual treatments didn’t work for Ken, so he just tries to make the best of the situation. “There’s definitely a cognitive challenge. I have a very hard time reading because I can’t concentrate and I limit my driving. I focus on doing one or two valuable things a day. My ability to concentrate is limited to about two to four hours a day.”
“I was a teacher and when I retired, I was a coordinator for a small non-profit time bank in Saco. Organization and detail work have always been my forte. But after a while I began having difficulty with tasks that had always been easy for me. If I started a project and stopped it, when I went back to it I would have to start at the beginning. I was messing up dates and times and scheduling things wrong and not understanding papers that people would give me with information.”
It’s been five years since Donna found out she had Alzheimer’s disease. “I will lose my train of thought and have trouble searching for some words — things like that. My ability to communicate is very good. I’ll take what I can get.”
Donna participated in a clinical trial, and although she hasn’t been told if she got the drug being tested or a placebo, she’s pretty sure it was the drug because she has been doing so well. She’s waiting to see if she can get into a follow-up trial that will put her on it for four more years. “There have been times in the past five years that I’ve been worse than I feel right now,” she says. “When I get tired then my head doesn’t work very well.”
Don’t you think it’s pretty amazing that these two people, who are dealing with a pretty devastating disease even if they are both doing well, have chosen to reach out and help other people? I do. They’ve asked me to extend an invitation to visit one of the cafés if you’re interested.
MEMORY CAFÉ LOCATIONS
North Dam Mill Coffee Shop
2 Mill Street
4th Tuesday of the month
9:00 am – 11: am
Woods at Canco
257 Canco Road
2nd Tuesday of the month
For more information call Ken Capron at 207.797.7891 or send him an email. He says he plans to start more Memory Cafés in the near future.