It was only a few months after getting the Alzheimer’s diagnosis that I received a broadly distributed e-mail from a business acquaintance that began with, “Even with my failing memory I don’t recall.” I knew this acquaintance didn’t have cognitive impairment. I also knew that I couldn’t ignore it. I had to respond. At that moment, for the first time, I publicly replied with “I have Alzheimer’s.”
That is how my journey of advocacy began. There have been several “teachable moments” so far on the journey. That’s what I call opportunities to break the cycle of ignorance and to change attitudes through education. I do it one person at a time; one opportunity at a time.
No matter where in the world, I think there is a stigma around dementia. You say you have Alzheimer’s in a group of people and the room can become quiet. People can become uncomfortable and it seems to me for no other reason than the dreaded stereotype associated with Alzheimer’s or related dementias of someone in the final stages, approaching 100 years of age, and who doesn’t speak.
In those “teachable moments” I can shatter the stereotype and educate one more person.
After all, I was diagnosed when I was only 58 years old, not considered a “senior” by legal or societal standards, yet by appearance I look like a healthy, capable middle-aged man.
My passion is advocacy, whether it is one person or in a group, whether quietly in the background or through loud demonstration, I believe in the value of advocacy because it is an opportunity to make voices heard.
And who better to tell the story than people with dementia and their caregivers?
Augmenting my self-advocacy efforts is the Alzheimer Society of B.C., where I am an Alzheimer Advocate, honorary editor of the newsletter written by and for people with dementia called Insight, and am on the volunteer board of directors.
The Alzheimer Society of B.C., with their experience and expertise in providing support and education, are the best suited to lead the initiative for improving dementia care in our province.
How else will people know what is happening in our world?
Jim Mann, Surrey