Craig Burns is a board member with the Alzheimer Society of BC, works with future doctors at UBC, is a public speaker, and is involved with the Canadian Centre for Elder Law. What you may not expect, is that Craig was diagnosed with Alzheimer’s 6 years ago. It has been his mission ever since to stop discrimination against dementia patients, and debunk the stigma that people with Alzheimer’s are not able to make their own decisions.
How it started
“I started having problems with my memory in 2009. According to my doctor I was “too young” for memory problems and he dismissed my worries. After a while this doctor retired and my new doctor had me do a MOCA test. I scored 27 out of 30, a score too high to be taken seriously when it comes to memory problems. My doctor blamed it on stress and again, my worries were dismissed.”
In 2016, Craig’s doctor referred him to a psychiatrist. The psychiatrist diagnosed him with Mild Cognitive Impairment, which would most likely lead to dementia.
Clinical trial
“2016 started a new era for me. Around this time, I was struggling with anxiety and my memory. I wasn’t getting a lot of feedback from the health community and felt very discouraged. Then I saw an ad in the paper for Medical Arts Health Research Group and a clinical trial for people with memory difficulties. I applied and got accepted into the trial.
It was very reassuring for me to be in this trial, I was receiving frequent memory testing and my memory score was actively monitored. I also saw it as contributing to research and I was hoping it would slow down my condition.
I’ve been in the trial for 6 years now. I get a drug infusion with the test drug once every 6 weeks. The drug that I’ve been testing for was approved by the FDA last year. We are now waiting for Health Canada to give the green light too.”
Stimulations – Brain Exercise
“It’s very important for me to keep my brain stimulated, I volunteer for a number of organizations to help me do this. I’m a board member for the Alzheimer’s Society of BC, I do public speaking, I’m a volunteer patient for UBC, and I volunteer for Canadian Centre for Elder Law.
The most important thing I have learned and try to teach others through my community efforts, is the importance of helping Alzheimer’s/dementia patients make decisions for themselves, rather than having their caregivers or family members do that for them.”
Discrimination
“Discrimination and stigma are important topics when it comes to Alzheimer’s and dementia. What we really need in Canada are dementia friendly communities. Please don’t exclude the person who has dementia, just because of their condition. We want to get rid of the stigma that people who have dementia can’t be functional. When I tell people that I have Alzheimer’s/dementia they are often very surprised. I can still articulate and communicate my messages.”
Piece of advice
“If you are struggling with your memory, go see your physician and bring along someone that knows you well. Don’t let your doctor tell you it’s nothing and ask them for a memory test, like the MMSE or MOCA. Make sure they give you your score and go back a few months later and do the same thing. Then you can compare these scores.
Early detection of dementia means early treatment. Don’t give up and don’t let your physician be dismissive. If they are, search the internet for alternatives, such as clinical trials in your area.”
The Medical Arts Health Research Group offers memory testing in Penticton, Kelowna, Kamloops and Vancouver. Would you like to have your memory tested? Click here for more information.
Would you like to see if you could participate in a clinical trial like Craig? Contact our Brain Health Team to see if you’re eligible.