Experts sound alarm with dementia care 'abandoned politically' in Canada
· Toronto Sun
When World Alzheimer’s Day arrives on Monday, it will bring mixed emotions for experts in the field of dementia research.
While there is better understanding of the risk factors associated with the neurodegenerative disease and the crucial role caregivers play in the health-care sector, the political will to adequately address an impending “public health crisis” among a rapidly aging population leaves a lot to be desired, according to Dr. Howard Chertkow.
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“The issue has been abandoned politically,” said the co-scientific director at Baycrest Kimel Family Centre for Brain Health and Wellness.
“Each case of dementia is a tragedy and the effect on families is a sad chronic illness, so I’m encouraged by the fact that for the first time, we’re really making progress in treatment and diagnosis, we’re learning more about prevention and we’re going to be able to do things now.
“What’s discouraging is the resistance to actually taking action to implement things what we’ve learned.”
Little attention on a ‘quiet illness’
To Chertkow and his associate Dr. Adriana Shnall, it is important governments act before the health-care system is even more overwhelmed by the growing number of Canadians affected by dementia.
A 2022 study by the Alzheimer’s Society of Canada estimated there were nearly 600,000 Canadians living with dementia at the beginning of the decade, with Alzheimer’s disease being the most common form. But by 2030, the study predicted there will be more than one million Canadians with dementia and that it would rise to 1.7 million by 2050.
Despite this, Chertkow said the federal government has never fully implemented its 2019 national dementia strategy, while estimating the cost of treating dementia patients in Canada and lost productivity from family caregivers costs the national economy $50 billion per year .
“It is important to have things like World Alzheimer’s Day to bring the public attention to the problem, because when you have something like COVID, it’s frontline news and deservedly so,” said Chertkow, who is also a professor at the University of Toronto’s Institute of Medical Science.
“But an illness like dementia is a very quiet illness. The caregivers and families are tired and exhausted (already without the thought of) marching on Parliament Hill with placards.”
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‘Grinding’ ordeal for families
Why? Because dealing with dementia in general is a “grinding” routine for patients and their families, who are rarely prepared for the financial and emotional tolls of the disease.
“We are never prepared to see our parents not be sound of mind,” said Shnall, the director of integrated learning, caregiving and innovation at Baycrest. “We’re prepared to see our parents be frail; perhaps they need a walker, they need more support.
“But when a parent says to you, ‘Who are you?’ and, ‘Leave me alone.’ When you’re trying to help, it’s very hard.”
While Shnall said it can feel like a “crisis” when symptoms start to escalate, especially emotionally, there are things people can do to prepare. She suggested caregivers communicate early and respectfully about things like budgets and safety plans, which include things like the Alzheimer’s Society’s wandering persons registry .
She said families can take advantage of tax credits, educational seminars at places like Baycrest and day programs as well.
But just as important, Shnall added, is caregivers need to find time to take care of themselves, as being a caregiver makes them six times more likely to develop the disease. The reason being is they have likely ignored the risks of developing the diseases themselves, such as a lack of exercise, social engagement or a healthy diet.
“It’s not because it’s contagious … it’s because you let your needs go,” she said. “So I find that educating people around the importance of self-care … scares people enough to be putting some things into place.”