Time is now to end dementia’s stigma: Alzheimer Society

Survey shows negative – and false – stereotypes of condition are prevalent in Canada

Results of a recent survey from the Alzheimer Society of Canada indicate a significant number of Canadians are concerned they would face discrimination or even be avoided by family if they had Alzheimer’s disease or dementia.

With the stigma surrounding dementia still prevalent in Canada, the Alzheimer Society decided to aim its 2018 awareness campaign – called “I live with dementia. Let me help you understand” – at ending dementia’s stigma and encouraging Canadians to learn about the condition and how stereotypes affect people, says Mary Schulz, the Alzheimer Society’s director of education.

Schulz says one of the things the society often hears from people living with Alzheimer’s disease and dementia is that they feel the stigma attached to their condition, and the survey results reflect this.

According to the Leger-led online survey of 1,500 people aged 18 to 65, 61 per cent believe they would face discrimination if diagnosed with dementia. Forty-six per cent said they would feel ashamed if diagnosed with dementia. One-quarter said they believe their friends and family would avoid them if they were diagnosed with the condition.

“People who do not have dementia said they would be embarrassed, they would be ashamed, and that reminds us of the dark days when people would not say they had cancer,” Schulz tells The OMNIway.

“There was so much stigma about (cancer), and that’s not helpful because it means we’re not being open about talking about these conditions, it means people will tend to withdraw and stay in their homes and become isolated and depressed, and that only makes their condition worse.”

There is a negative trickle-down effect from dementia’s stigma that impacts us all, Schulz says, noting that many people with dementia play active roles in their communities. This, she says, is why the stigma must end.

“(The stigma) means that as a society, we are not benefiting from the fact that (people with dementia) are going to have years and years ahead of them where they can still contribute and be a part of society in a meaningful way,” Schulz says.

“This campaign is about reminding Canadians that people with dementia are still whole people who have skills and abilities and experience to share and to contribute. They have feelings like the rest of us and they have value like the rest of us and they have rights like the rest of us.

“We need to find a way to accommodate (people with dementia) the same way we accommodate anyone with any kind of disability,” she says.

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