How Canadians perceive dementia

I lost two friends to early-onset Alzheimer’s and currently have a friend who has vascular dementia, so it is a concern of mine. Many Canadians acknowledge that people living with dementia regularly experience many forms of stigma.

But there is still more work to be done to reduce stigma. Here are the results from the Alzheimer’s Association's recent Awareness Survey. Unfortunately, research shows that stigma around dementia is rampant in Canada. Here are some selected numbers from their 2017 Awareness survey:

By the numbers

The urgency

·        569,600 The number of Canadians living with dementia in 2020.

·        955,900 The number of Canadians living with dementia in 2030.

·        124,000 The number of Canadians diagnosed with dementia in 2020.

·        61.8% of those living with dementia in 2020 were women.

·        1 in 5 Canadians have experienced caring for someone living with dementia.

The costs

·        Over $10.4 billion The annual cost of dementia to the Canadian economy and healthcare system

·        $359 million The cost to bring a dementia-treating drug from the lab to market.

The stigma

·        56% of Canadians are concerned about being affected by Alzheimer’s disease.4,

·        46% of Canadians admit they would feel ashamed or embarrassed if that they had dementia.

·        87% of caregivers wish that more people understood the realities of caring for someone with dementia.

On acknowledging the existence of stigma and stigmatizing language

·        58% of Canadians believe that people living with dementia are likely to be ignored or dismissed.

·        51% of Canadians admit to using derogatory or stigmatizing language about dementia.

·        30% of Canadians admit to telling dementia-related jokes.

On how stigma can discourage support

·        2 in 3 caregivers find the experience of caring for someone with dementia to be isolating.

·        Only 39% of Canadians would offer support for family or friends who were open about their diagnosis.

·        Only 5% of Canadians admit they would learn more about dementia if someone close to them were diagnosed.

On the effects of self-imposed stigma

·        56% of Canadians are concerned about being affected by Alzheimer’s disease. Of greatest concern is their fear of being a burden to others, losing their independence and the inability to recognize family and friends.

·        50% of Canadians don't believe they could live well with dementia. In fact, 27% believe their life would be over after getting diagnosed.

·        1 in 5 Canadians would avoid seeking help for as long as possible, if they thought they had dementia, perhaps to avoid the associated stigma and embarrassment.

Three key takeaways from the survey results

·        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 living with dementia and caregivers seeking help and support.

·        Life without discrimination is a right for anyone affected by this disease.