There are Options to Long-Term Care

Canadians overwhelmingly do not want to live in long-term-care facilities (also called nursing homes) when they are old.

But many end up there, especially people with dementia—who are most of the people living in long term care. That’s because what governments provide in home care is not adequate, and many elders and their families can’t afford to buy home care privately. Eventually, care partners burn out from providing free care at the same time as caring for their teenage children and going to their jobs.

There are good reasons why Canadians overwhelmingly don’t want to live in institutions. For people with dementia, there is no dignity in living behind locked doors, wandering sanitized corridors or staying in their rooms with nothing to do but watch TV.

– Dr. Margaret Oldfield & Dr. Maude Lévesque

If families prioritize safety for their loved ones, they may assume that institutions are safer for them than living at home. Unaware of alternatives to institutions, they put their loved ones with dementia into long-term care facilities—often with a lot of guilt.

Yet there are all kinds of options other than institutions or free care provided by families. However, first, people don’t know about them. Second, they’re vastly underfunded by Canadian governments. And third, they’re usually much cheaper than institutions.

Compared with countries in Europe, Canada spends way more on institutions than it does on home care—five times more. And our institutions are huge, housing hundreds of people rather than a maximum of 30 as in the UK. On top of that, Canadian government spending generally goes to institutional beds or programs, not individual seniors. This makes the mismatch between what Canadians want and what their governments fund even worse.

Why Options are Needed

There are good reasons why Canadians overwhelmingly don’t want to live in institutions. For people with dementia, there is no dignity in living behind locked doors, wandering sanitized corridors or staying in their rooms with nothing to do but watch TV. If residents can participate in activities outside their rooms, these activities are likely designed for a large group and may not be meaningful to them as individuals. Fun is rarely spontaneous.

The common spaces of institutions are generic, devoid of personalized touches and designed squarely with ease of maintenance in mind. Many institutions offer only physical care, not emotional or social care, because that’s all that governments pay for.

Residents with dementia rarely have privacy. Doors to their rooms are often left open, and staff can enter whenever they want. Worse, people with dementia may be controlled with physical restraints and anti-psychotic drugs. Once they’re admitted to an institution, over half of Canadian long-term-care residents develop dental problems. These lead to malnutrition, weight loss, and frailty. They’re very likely to be depressed.

And let’s not forget what happened during the COVID pandemic. Seniors in long-term care were 13 times more likely to die than seniors living in their own homes. This is because infections were easily transmitted, and scarce personal protective equipment went to hospitals.

Not only are institutions riven with problems, they separate disabled people—which all residents are—from non-disabled people. This ignores the human rights of disabled people under the UN Convention on the Rights of Persons with Disabilities. Canada signed on to this international treaty.

Over this spring and summer, we’ll tell you about all kinds of alternatives to long-term care that already exist, or could exist, in Canada.

– Dr. Margaret Oldfield & Dr. Maude Lévesque

Alternatives to Long-Term Care

Clearly, Canada needs a revolution in how we support people with dementia.

Over this spring and summer, we’ll tell you about all kinds of alternatives to long-term care that already exist, or could exist, in Canada.

We’ll also help those of you who are professionals, such as social workers and community nurses, guide people with dementia and their family members through advanced care planning. We’ll show you how to use supported decision making. It empowers people with dementia by preserving their agency.

We propose a revolution in how Canada serves its seniors. Not just the current generation, but those to come, including ourselves. We may all need care, eventually.