Barbara Haines, 70, might forget the odd recipe or game of cards, but Alzheimer’s hasn’t changed her, she says from her Nanoose Bay home.
“When I found out I had it I cried for awhile, but then I thought, you know what, you got to do what you can do,” said Haines, who was diagnosed four years ago. “My life is pretty well as good as it was except I forget things.”
The Alzheimer Society of B.C. has launched a new campaign this month that’s fighting back against stigma by allowing people to hear about dementia from the mouths of those affected by it, like Haines.
The society has stories and information on its website for the ‘I live with dementia, let me help you understand’ campaign, as well as findings from an online survey.
In a press release it said that while awareness about dementia has increased, stigma and negative attitudes continue to persist.
The survey of 1,500 Canadians, revealed, for example, that five per cent of people would learn more about the disease if someone close to them were diagnosed and 50 per cent of respondents don’t believe they could live well with dementia.
It also shows 51 per cent of people admitted to using some kind of stigmatizing language, such as telling dementia-related jokes, and that 46 per cent of respondents would feel ashamed or embarrassed if they had dementia.
Jane Hope, support and education coordinator for the Alzheimer Society’s First Link program, isn’t surprised that negative attitudes and stigma still exist but believes things are changing.
“When I first started there was a lot of stigma. If I wanted to do education I would have trouble getting enough people who were interested in coming, whereas now there’s certainly a lot more interest,” she said. “We are moving in the right direction. I think it’s just a long, slow process.”
She said there are myths about dementia, such as the fear people will no longer be able to live well which isn’t true, and that people are afraid of even the word.
Hope said she loves the new campaign, with one of the assumptions being that people with dementia can’t tell their own story and it makes all the difference in the world to hear directly from the person living with the illness.
Haines called the campaign great, adding “people need to know.” She was diagnosed after a stroke when a brain scan showed a spot on her left side that was later confirmed to be Alzheimer’s. She still does most of the cooking, laundry and she floor curls and people have not treated her differently, she said.
“I am quite happy.”
The campaign website can be found at ilivewithdementia.ca.