#StillHere campaign aims to overcome the stigma of dementia

After learning that she had dementia, Phyllis Fehr did something that might shock you — she decided to take up archery. Fehr is part of a growing number of Canadians who are challenging the stigma of dementia, proving that life isn’t over after you get the dreaded diagnosis.

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The Alzheimer Society is hoping to shake up perceptions about dementia with its new campaign #StillHere. Up to 15 per cent of Canadians over 65 are living with dementia, yet the stigma of the disease prevents many from getting the help they need.

The Alzheimer Society released a new video with the hope of helping people better understand the real experiences of people with dementia rather than making assumptions.

“They treat me differently. They act like I don’t understand. When people find out I have Alzheimer’s, it’s as if I’m suddenly not there,” says the video’s narrator. “I’m still here.”

Fehr admits in an interview with CBC that she was depressed upon hearing her diagnosis. “Things go through your head,” she explained. “You kind of go, ‘Oh, what is my life going to be like? What do I have left with my life?’ And I would be the first person to admit, you kind of get a little depressed.”

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But Fehr decided to be proactive about her health, taking up archery in an attempt to keep her mind sharp. “I figured the more that I can do, the more I concentrate, the better things are going to be. This is something that I can do and do well.”

Often people living with dementia find that others no longer view them the same way, and they lose valuable social support systems.

“People with dementia face discrimination and social rejection. Often they are ignored. People will address their care partner even when the person with dementia is standing right there. They may lose friends because of misconceptions about abilities,” Pia Kontos, a senior scientist at the Toronto Rehabilitation Institute, told CBC.

According to Nanos Research, almost half (47 per cent) of Canadians believe it’s not possible to live well with Alzheimer’s disease and other forms of dementia. Women are more concerned about the effects of dementia than men are, with 64 per cent of females worrying that they can no longer live well with the disease.

“It’s disempowering, this stigma,” Kontos said. “It’s demeaning, and when they internalize that stigma, they edit themselves into silence for fear of being judged, so they themselves are disengaging, and that has really detrimental consequences for quality of life and for their well-being.”

Hopefully this new campaign will go viral, helping people with dementia get the understanding and respect they deserve.

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