Supporting dementia patients and caregivers is a moral imperative

Posted on September 13, 2022 in Inclusion Debates

Source: — Authors: – Opinion/Editorial
Sept. 13, 2022.   By Star Editorial Board

On average, caregivers provided 26 care hours a week, or the equivalent of 235,000 full-time jobs. 

If you’ve never cared for a friend or family member living with dementia, you’re a member of an increasingly exclusive club.

According to the new Landmark Study from the Alzheimer’s Society of Canada, 350,000 people act as care partners for the 600,000 Canadians living with Alzheimer’s disease and other dementias.

On average, caregivers provided 26 care hours a week, or the equivalent of 235,000 full-time jobs. Even at minimum wage, the care provided is worth about $7.3 billion.

Needless to say, this puts enormous strain on families. The majority of unpaid caregivers are members of the “sandwich” generation — young enough to be raising children of their own, but old enough to have a parent living with dementia. They are therefore required to do double-duty by taking care of two generations at once.

Spouses of dementia patients, who represent a significant minority of caregivers, also perform a kind of double duty: With advancing age, they’re frequently dealing with their own medical issues, but must also come to the aid of their spouses.

The toll this takes on caregivers is profound: According to the Canadian Institute for Health Information, 45 per cent of caregivers exhibit symptoms of distress, compared with 26 per cent of those providing care to individuals with health conditions other than dementia. And 21 per cent say they’re unable to continue their care duties due to stress.

And we have only seen the tip of the iceberg, as many more Canadians will soon find themselves caring for a friend or family member. The Landmark Study predicts that the number of Canadians living with dementia is expected to cross the one million threshold by 2030 and reach 1.7 million in 2050. Care hours provided by families could therefore reach 1.4 billion in 2050, or the equivalent of 690,000 full-time jobs.

That’s one vision of the future. But the Landmark Study provides another. If we can delay the onset of dementia by just one year, we could avoid 500,000 new cases by 2050. And if we could stretch the delay to 10 years, more than four million new cases could be avoided.

This sounds like merely delaying an inevitable problem. But it isn’t. Since most people with dementia die from common causes such as cancer or heart disease rather than from dementia itself, delaying dementia can reduce the amount of time people spend living with the disease and increase the time they spend living healthy lives.

That’s a win for everyone — for people at risk of dementia, their caregivers and the health care system. And that’s why all levels of government must help to make delaying dementia a reality.

That means targeting research funding to efforts to prevent and delay dementia onset, as well as initiatives aimed at reducing both depression and air pollution — two common, though not widely known, risk factors for dementia.

Additionally, since dementia will remain with us for the foreseeable future, the Alzheimer Society recommends improving dementia surveillance, including tracking every case of the disease.

The care of those with dementia and their caregivers should also be a priority. Governments can commit to the upcoming national standards for long-term care, and the Alzheimer Society advises enshrining in law paid caregiver leave for long-term conditions, as well as supporting flexible workplaces for caregivers.

Indeed, supporting both dementia patients and their caregivers isn’t just a political obligation; it’s a moral imperative. Or to put it differently: A society can be judged, not merely by how it treats its most vulnerable members, but by how it treats those who care for them.

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