Stuck in bed 23 hours a day: What's wrong with home care in Canada and how another country changed course

Seven days a week, Margot Algie can't get out of bed before noon. Not from choice. She has amyotrophic lateral sclerosis (ALS), a debilitating neurodegenerative disease, and needs a home care worker to help start her day.

But once someone arrives to shift her into a wheelchair, dress her and help with toileting, Algieoften only has one hour sometimes two before another home care worker arrives to put her back to bed at 4 p.m.

"Being stuck in bed isn't great for my body, my skin or my psyche," said the Toronto woman, who is gradually losing the ability to do all basic living activities.

But the home care company says "that's all that's available," she said.

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At least once a week, she gets a call to say no home care worker is available at all.

"I'm terrified when they say I can't have help," said Algie, 63, who says she's fully dependent on the care she receives.

Algie is not alone when it comes to complaints about substandard home care. A recent CBC Marketplace investigation sparked hundreds of stories from home care clients and their families across the country, complaining of missed visits, shortened visits and the inability to get visits at all.

Compounding problems, the number of people who rely on home care is expected to increase by more than 50 per cent in less than a decade, according to the Canadian Medical Association (CMA).

It estimated in a recent report that more than 1.1 million Canadians receive home care and that by 2031, that number will likely increase to 1.7 million. On top of that, the report estimates the annual cost for long-term care and home care in Canada will almost double during that period, from $29.7 billion to $58.5 billion.

"This problem is getting worse," said CMA president Katharine Smart. "There is a real risk we will see our systems start collapsing over the next months and years."

It's a grim prediction that doesn't have to materialize, said Dr. Samir Sinha, director of health policy research for the National Institute on Ageing and director of geriatrics at Sinai Health and the University Health Network in Toronto.

"The problem that we've had in Canada is this notion that if you can't care for someone at home, they need to go live somewhere else," said Sinha. "And so we have this real culture of institutionalizing people."

Sinha said what's needed isn't rocket science. Provinces need to invest more in home care to help people age in place.

"Right now there are about 200,000 Canadians living in long-term care homes," he said. "About a third of them 60,000 or 70,000 people could've actually stayed in their own homes, with proper home care support."

Meantime, he said, at least 50,000 Canadians are waiting to get into a long-term care bed but there's no room. Many have no option but to wait in hospitals for a spot to open up.

WATCH |The system this clinician says he's up against:

'That breaks my heart,' says Canadian geriatrician

2 years ago

Duration 0:30

Dr. Samir Sinha says Canada's home care system often robs the dignity of his patients.

But Sinha said making a fundamental change to invest more in home care is a hard pitch to sell.

"Our politicians are living on four-year political life cycles and just trying to focus on getting re-elected rather than figuring out how to create a sustainable health-care system for the future," he said.

Smart says time to act is running out.

"I think there has never been a more urgent moment to shift our health-care system.

"This is a real example of where the government needs to get beyond politics and understand that Canadians need this system. It has to be functional. And right now it is not."

Look to Denmark, geriatrician urges

The way forward is to take a page from Denmark, said Sinha, who has travelled to the Scandinavian country to study its long-term care strategy and returned last month with a CBC Marketplace crew.

In the late 1980s, Denmark which, like Canada, has an aging population and publicly funded home care slowed the growth of new nursing homes and instead used that money to heavily invest in home care.

Now, according to the Organisation for Economic Co-operation and Development,roughly half of all long-term care spending in Denmark is based on providing care in people's homes, whereas in Canada only about one-third of spending goes to home care.

The funding means people in Denmark can get anywhere from 20 minutes to 10 hours of home care a day, depending on their needs.

When Danish people turn 80, they are automatically offered a home visit by a nurse to assess how things are going and whether they need any support to help keep them aging at home.

"We talk about if they have lost their husbands or wives, and how it is to be alone," said Camilla Hove Lund, who manages the home care program in the municipality of Ringsted, 70 kilometres southwest of Copenhagen.

"We talk about their network do you have some friends? Some family? Do you have activities you go to?" said Hove Lund. "And if we hear they need a little bit of help, we give that to them."

It may sound like a warm and fuzzy approach, but don't be fooled, said Sinha. "It's actually a deliberate strategy to keep the overall health-care system sustainable."

When Danes find themselves struggling physically perhaps no longer able to bathe themselves they're registered in what's called a "reablement" program.

"We offer them the bath," said Hove Lund. "But we also offer training with our workers to do the bath by themselves again."

WATCH|Come inside a home in Denmark:

'The goal is to strengthen his legs,' says Danish PSW

2 years ago

Duration 1:07

Johnny Olsen does rehab exercises with a trained personal support worker as part of Denmark's 'reablement' program in home care.

It's a much different approach than the home care most often provided in Canada, said Sinha.

"The little home care that we make available to Canadians is often what we call 'reactive' home care," he said. "Someone falls, they need a bath, we send in people to help. Whereas [in Denmark] there is this idea of preventative home care."

In Ringsted's rural outskirts, 72-year-old Johnny Olsen, a former farmer, is struggling with Alzheimer's disease.

He gets six home care visits a day, including physical therapy twice a week to strengthen his arms and back and try to prevent him from falling.

"It's working," he said, as he diligently followed the prompts of his home care worker to raise and lower his legs.

In Denmark, all home care workers are trained to do preventative physio to try to keep people aging in place, whereas in Canada, it's not standard practice for home care workers to get rehab training and physiotherapists are in high demand.

"We have a big group of elderly who need a lot less help if we give them rehabilitation," said Hove Lund.

Those who do get rehab also have their progress tracked.

"The results are very important to us," said Hove Lund. "We have to show our politicians that this works. You have to give money to this."

It's all a deliberate effort to help people age at home and all a far cry from what's being delivered back at home, said Sinha.

"We need to say that we don't have a system that's currently working as well as it could," he said. "These aren't pie in the sky ideas we're physically seeing them here in Denmark."

Promises to invest more in home care

In 2018, Ontario's Conservative government hired Sinha to develop a Senior Strategy a long-term care plan for the province's aging population.

He presented a reportthat called on the government to build fewer long-term care beds and invest more in home care.

But he said the Ford government basically shelved his report and instead committed to spending $6.4 billion to build 30,000 new long-term care beds by 2028. That's on top of its annual $6-billion budget for long-term care and $3 billion for home care.

"They chose the solution that frankly is a lot more costly to taxpayers, but works really well for developers," said Sinha.

"It really troubles me because we're not getting the fundamentals right here. Nobody actually aspires to end up in a nursing home. But for the public, it's being presented as, 'We're doing this big thing to take care of this big problem.'"

But earlier this week, in a surprise announcement, the Ontario government said it plans to invest an additional $1 billion over three years in home care if re-elected in June.

"This significant investment will ensure Ontarians can receive the care they need in the comfort of their own homes," said Health Minister Christine Elliott.

It's a step in the right direction, said Sinha. "This investment will help to fix fundamental problems [the Ontario government] created after four years of deliberately starving Ontario's home care system."

Meanwhile, the Ontario Liberal Party said that if elected, it would invest a further $2 billion in home care over four years and end for-profit long-term care by 2028.

The provincial NDP said it would invest up to $1 billion in home care if elected and would also end for-profit long-term care.

A survey by the National Institute on Ageing found that almost 100 per cent of people said they hope to age at home, as opposed to moving to a long-term care facility.

Figures obtained by Ontario's Ministry of Health show that providing home care is also half the price of a long-term care bed roughly $100/day compared to $200/day and far less costly than a hospital bed that costs approximately $700/day.

Home care clientsin Canada receive, on average, 4.9 hours of care a week. According to the CMA, even if that number was increased to 22.2 hours per week, to reflect higher need clients, it would still be cheaper than institutionalized care.

"When you're delivering care in a long-term care home, you've got to buy a piece of land, you've got to erect a building, you have to heat and cool it," said Sinha.

"You don't have to be a mathematician to realize that the care that most people actually want is the most cost-effective for the taxpayer and more in line with what everybody hopes for."

Stuck in bed for most of the day, Algie said she's tired of struggling with a broken home care system that's in desperate need of better funding.

"It really gets my goat," she said. "Everybody knows it. And yet, we're still in this pickle of being underfunded. I just don't get it."