Alone. Ashamed. Afraid.
For many people living with dementia — and their informal caregivers — cognitive decline is a crushing disease that slowly destroys intellect and memories.
Amidst this heartbreak is another sad reality: society so fears dementia that it stigmatizes people with the disease, adding to their isolation.
Now, after years of waiting, Canadians have the start of a national dementia strategy that could alleviate some of that pain.
The recent federal budget contains a $50-million, five-year commitment for a strategy to support Canadians with cognitive decline, their caregivers and the health professionals who manage or research the disease. Details will be announced later this spring, and the Public Health Agency of Canada is to oversee the roll-out of the strategy.
It had better be worth the wait.
In Canada, half a million people now have dementia, with the number expected to top 900,000 in 15 years. By that time, in the 2030s, cognitive decline will cost the health-care system and families more than $20 billion a year.
This isn’t a disease that only impacts “others.” A surprising number of us know someone touched by dementia. Many have given up jobs to care for a loved one at home, only to grow exhausted, accept the finality of a nursing home and watch a mother, father or spouse grow isolated in the rush of institutional care.
Some watch those families struggle and declare a preference for Canada’s medically assisted suicide, if they were to get the same disease. Perhaps it’s just gallows humour, but too many people see only a bleak future with limited options for support.
Globally, Canada is joining 32 other countries that already have strategies in place, a late entry precipitated by legislation called the National Strategy for Alzheimer’s Disease and Other Dementias Act. Now that there’s money in the (pre-election) budget to back the strategy, Health Minister Ginette Petitpas Taylor must ensure that dementia is declared a national health priority. And that’s just the start.
To her credit, Petitpas Taylor has created a strong foundation, with a ministerial advisory board that includes leading geriatricians, a scientist, nurse and advocates, as well a member living with dementia and a family caregiver. All their perspectives are important. Their recommendations will help form the national vision for the strategy, enhancing the work of provincial strategies such as those in Ontario, Alberta and Quebec.
Board members like the Alzheimer’s Society of Canada CEO Pauline Tardif (who is co-chair) and Dr. Samir Sinha, director of geriatrics for Sinai Health System and the University Health Network in Toronto, have long spoken of ideas for change.
For example, the Alzheimer’s Society rightly wants a public awareness campaign that talks about the possibilities of dementia prevention, telling us about the relationship between brain health and exercise, a heart-healthy diet, life-long learning and socialization.
Clearly, we still need education on cognitive decline to end its terrible, isolating stigma. A 2018 online survey commissioned by the society found that half the 1,500 participants said they would not want others to know if they had dementia; one in four said they would feel ashamed or embarrassed if they had the disease. Let’s use the national strategy to change our views of the disease.
Explain how cognitive decline begins, with the high school math teacher, the real estate lawyer or the manager of the local grocery store. Make it real. Help us understand that people with dementia are our next-door neighbours, our parents, ourselves. Allow us to grow familiar and unafraid so we can help people with the disease feel included in life — and the local coffee shop or art gallery — instead of afraid and alone.
And as Dr. Sinha says, leverage the money for research seeking a cure but also, research the best options for care, like emotion-focused programs that show promise in a few nursing homes. Those best practices should spread to home care or adult day programs, which can help people live at home.
Training for health care professionals is key to the strategy’s success.
New education must include vitally important soft skills like empathy and emotional intelligence. Workers must learn how to relate to people who are living in memories from say, 1942, seeking comfort from a parent, or waiting for a child to come home for dinner, reliving the days when there was a vibrant purpose to life.
Consider it a second language, a way to communicate with people who live through their feelings, not intellect.
If the public awareness strategy has one prevailing theme, it should be this: one day dementia will become personal. Research shows that after our traditional retirement age, the odds of developing cognitive decline will roughly double every five years.
Sinha, who created much of Ontario’s dementia strategy, says Canada now has the opportunity create a vision that is “not just great on paper, but truly impactful. Not just transactional, but transformational.
“Because, we all need it. Any of us who expect to make it to 65? There’s a good chance we will actually be living with dementia down the road.”
Canada needs to turn its strategy into action.
https://www.thestar.com/opinion/editorials/2019/03/29/canadas-national-strategy-on-dementia-must-break-the-cycle-of-shame.html
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