January marks Alzheimer’s Awareness Month, and both officials with the Alzheimer Society and those battling the condition are fighting to reduce any sense of stigma surrounding the condition.
In an effort to help bolster awareness about stigma and better educate folks about dementia in general, the Society has launched a campaign called, ‘I live with dementia. Let me help you understand’ that is geared to helping the public view it in a different light.
This past November, the Society surveyed 1,506 Canadians to get their thoughts on Alzheimer’s and dementia.
The results were telling, including the fact that those surveyed believed that 57% said they believed those living with dementia experience far more stigma than those with physical health conditions.
Reports also showed that 58% of those asked said they felt those with Alzheimer’s or dementia may experience being ignored or dismissed compared to 23% of those with a physical health condition.
Fifty-one per cent of Canadians also admitted to using some type of stigmatizing language such as telling dementia-related jokes, referring to someone as ‘senile/crazy’ or referring to someone as ‘demented’.
“These results validate our thinking, that stigma is one of the biggest barriers for people with dementia to live fully with dignity and respect,” says Pauline Tardif, CEO at the Alzheimer Society of Canada. “The findings underscore the work we must still do to end stigma once and for all.
“There is no shame in having dementia. We can’t let negative perceptions stand in the way of people with dementia seeking help and support. Life without discrimination is a right for anyone affected by this disease.”
Medicine Hat resident Roger Marple has stepped up to share his story as part of the powerful awareness campaign.
For this proud father and grandfather, who developed young onset Alzheimer’s three years ago at age 57, his diagnosis was a tough pill to swallow, notes a release. But in time, he overcame his initial shock and sadness.
“It creeps up on you so slowly, and I get why people don’t go immediately to their doctor because it’s so gradual,” he explained during a recent interview. “What got me to go to my doctor – is I worked in supply chain management for Alberta Health Services, and one day I was working on an Excel spreadsheet. I checked it over three times before I sent it because my boss demanded perfection.
“I sent it to him, and 90 seconds later he sent it back and said, ‘What is this?’ So I opened up the spreadsheet and it didn’t even make sense to me.”
A minute later his boss called him and following a talk, encouraged Marple to see his doctor.
He was eventually diagnosed with Alzheimer’s Disease with vascular components.
“My first vision of Alzheimer’s is someone sitting in a wheelchair staring out of a window unable to communicate at the end of days. People’s minds just race to that when they think about Alzheimer’s. Trust me, there are thousands and thousands of people who are living well with this disease despite their challenges,” he explained.
“But often you get stereotyped and put into a box.” An awareness of related stigma in society began to surface as well.
In the time following his diagnosis, Marple made the choice to be completely open about his condition and first shared his story with the local paper. “The story ended up going viral. The only condition I gave her for the interview was that it had to be positive,” he said. “I hadn’t seen a whole lot of articles, if any, with a positive slant to them.
“People living with dementia and their families are starving for positive information, so that’s how I got started speaking. It’s really blossomed.”
Marple and others invite Canadians to hear their inspiring stories and take a few pointers from them on how to be open and accepting towards people with dementia via the campaign.
There is also simply no place for inappropriate talk or jokes about such a serious condition, he said, noting that one day on facebook he saw three different jokes poking fun at Alzheimer’s and dementia. “We need to connect the dots from ‘point A’, which is the joke – to ‘point B’, and how it affects people,” he said. “There is no shame in it – it’s a medical condition just like anything else.
According to the Society, in less than 15 years, an estimated 937,000 Canadians will have dementia.
Meanwhile, for Marple, being open about his condition has only led to positive outcomes.
“I have found by being open about the disease is that people tend to cut you more slack. If you do stumble, people tend to support you more. I truly cannot remember a time where there wasn’t a positive ripple effect when I’ve spoken out – it’s been 100 per cent good.”