First, a definition: a stigma is a set of negative and often unfair beliefs that a society or group of people have about something. For example: the stigma associated with mental illness equals the stigma of mental illness.
My dementia is considered by many as a stigma. It sets me out as different. Well, this column is about a stigma with Alzheimer’s/dementia (AD).
Stigma is a complex concept and may occur at the individual, interpersonal, family, societal, business, and institutional level. I, along with many others, hope to eliminate the stigma of AD. But the general population does not understand AD. As a result, we (those with AD) are often treated as different and/or ignored.
I picked this up from the internet:
“It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer’s or dementia you are an old fart. That’s how people see you. It makes you feel quite alone.”
With AD, the brain does not know how to control the body and do as it should. I have a caregiver, my wife, who is charged with the task of doing things that my brain should do. Eventually, I could go into a long care home (LTC) for 24/7 care. That is the AD circle and often is terminal. There is no cure available yet.
In effect, a stigma person is one who was different. Some examples: my wife makes sure I take my pills, she drives the car, she shops for me, she makes sure that I go to my appointments, etc. I can still get around, but it seems to be getting more difficult as time goes on. Some one will look at me as one with a stigma.
About six months ago, I was asked to participate in the creation of a Dementia-Capable Neighbourhood from Person to Policy. I will be involved as a volunteer in a Rural Neighbourhood Steering Team. There also will be urban and suburban steering teams. We wanted to be treated as normal but with this disease called AD. In effect, a person with a stigma was one who was different than me. I am not proud to have stigma thoughts but, I hardly knew what it meant until I have written this column. We wanted to tell the population that we were just different with our disease – our brain had slowed down. It would be like people with a cane, with hearing or visual difficulties, with old age, etc.
I am diagnosed with a disease called dementia or Alzheimer’s through a brain scan – a disease which can be terminal. When I was diagnosed with AD, I felt that I was different from my friends and neighbours. This occurred over time. I perceived that I was not ‘one of the boys anymore’.
I saw that the local Alzheimer’s Society of Huron County (ASHC), had a number of clients more like me, so I joined. It was with the ASHC that I realized what it meant to have an AD stigma. We were different and it was difficult to live with.
I took on the stigma reference by writing monthly columns describing my life called My Voyage with Dementia, which was circulated monthly in the local Alzheimer’s Society newsletter. It was then added to the Wingham Advance Times on a bi-weekly basis. My columns also appear on my blog for anyone to read. Search ‘Bob Murray’ and/or ‘my voyage with dementia’ and you will find my blog.
This is a very limited exposure of one person’s (my) feelings as I go through a life of AD. I have appeared on national radio and TV shows, and in various publications, but the stigma message did not seem to get out into the general population. I have recently put all my 500-plus columns into a book and printed 1,000 copies to be circulated in my community. It tells my story with dementia over 60 months one month at a time. It will be free.
These books will be available shortly. I will notify, via this column, where and when the books will be available.
When I was invited to be on the Dementia Friendly Community research program by the University of Waterloo, I was quite excited. This would be a chance to get the positive vision of AD out into the general population. We have had about five virtual meetings (Zoom) and our first in-person meeting was last week. Unfortunately, only five members of the steering committees showed up – 15 or more were absent. This confirmed my concept that very few want to talk about AD.
Lots of work ahead.
Meanwhile “My Voyage with Dementia” continues. Please remember that these columns are my opinion, not facts.
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Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease. Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com.
