Insiders see major shift coming to the way Alberta cares for the frail

Advocates in seniors care are watching what promises to be a major shift in the way Alberta cares for its oldest and most frail.

An expert panel last spring told the UCP government it should fund higher staffing levels in large care facilities by reducing the percentage of patients heading there, squeezing the flow to care homes by increasing support for people trying to live independently at home.

If done well, it would save money and improve the system overall.

But advocates say they are watching closely because there's a major risk. When people grow frail or ill outside of a care facility, the burden of care often falls on one or two family members.

Stuck monitoring a spouse with dementia 24/7, dealing with a parent who lashes out under aggressive Alzheimer's, waiting months or longer for respite programs — when the right support isn't available, these unpaid family caregivers often lose their jobs and income or simply burn out.

Then the frail adult needs a facility-based bed urgently … and Alberta's health-care bill goes up.

The UCP government is working on new legislation to enable changes to continuing care to be introduced this spring.

Alberta Health Ministry spokesman Chris Bourdeau said a request for proposals will be issued shortly to see how community organizations and the private sector can help. Non-profit and health sector leaders say they've been consulted continually.

"I want to be optimistic," said Dr. Vivian Ewa, a University of Calgary professor and geriatric doctor who sees this burnout in those caring for her frail patients regularly.

"A lot of us are excited about that because the hope here is that we'll have more community resources," she added in an interview. "And also more options for persons with dementia, persons living with chronic diseases in the community that will best support the caregiver." 

Throughout February, the CBC team in Alberta will be focusing on the experience of family caregiving, or supporting a frail adult, something Statistics Canada says one in four Canadians do. We'll publish a series of First Person accounts, developed through a writers' workshop last fall, and use our news team to understand how this experience is changing.

You can follow the project at cbc.ca/FamilyCare.

Experts recommend the shift

In May 2021, just after the worst COVID outbreaks in continuing care facilities, the Alberta government released its long awaited review of the facility-based continuing care system. The experts concluded that Alberta desperately needs to increase beds, improve facilities and boost staffing hours — both to support existing residents and to prepare for a major influx as the population ages.

The best way to do that, they suggest in the review, is by keeping as many people as possible out of these facilities.

Demand for care beds is projected to grow by 62 per cent by 2030. Right now, the split between people using home care versus going to a care facility is 61 per cent to 39 per cent.

If the government can shift that to a split of 70 per cent home care to 30 per cent in a care facility, it would save $2 billion in capital costs and more. 

They say it would save enough to fund increased staffing levels in care homes, plus a variety of improvements in the community.

"There's going to be a significant effort to get that legislation to us in the winter/spring session, which will be a really big step because you have to empower that evolution," said Calgary-Fish Creek MLA Richard Gotfried, who oversaw the first review.

"Then the (next step) is convincing the cabinet and Treasury Board that we're going to move money from some of the investments in facilities to investment in those home-based or community-based services," he said. 

Alberta has to reinvest money in home care, Gotfried said. If not, "you download that care (on family) and you create burnout, stress.… That's not a solution; that's a stopgap."

Alberta Health has hired the consultant Ernst & Young to help with a request for proposals, looking at how community services agencies and the private sector can help.

Health Minister Jason Copping was not available for an interview.

'I just about wept'

Among caregivers, it's easy to find worry and cynicism.

Julianna Barabas lives in Edmonton and supports her dad just outside Medicine Hat, bombing it down the highway each time there's a new emergency. He refuses to give up his independence and his home, even though it puts his health at risk, and Barabas is trying to support him in that.

"I'd love to see my dad stay in his home. It's where he wants to be," she said. "But the things he's struggling with the most, the system as it is cannot help him with. Home care relates to medical needs. When we, as caregivers, think of home care, we're thinking of cleaning and food.

"If we're looking at legislation that's expanding and trying to avoid burnout, they're going to need to expand their definition … of what home care really means."

We asked the group of caregivers who participated in the writers' workshops. They said the home care that's offered is often difficult to count on and there can be long waiting lists for respite services, such as adult day programs.

They also said more attention should be paid to the financial burden. Many of them gave up jobs, retired early or simply never returned to the workforce because they had to look after someone else. The federal caregiver benefit offers unemployment insurance at roughly half a person's salary for 15 weeks.

"When you are providing the care, you stress the finances because one person is not able to work, the person who is ill, and you as the caregiver have to take on the burden. It's really difficult," said Sushila Samy, who retired early to care for her husband in Beaumont, Alta.

I just about wept when my neighbour shovelled the snow twice.- Angeles Espinaco-Virseda

It can be a lot to manage, said Angeles Espinaco-Virseda. The Edmonton resident researches and makes appointments for both her parents, does their shopping, manages their house, brings them to activities and also works and cares for her own family.

"I just about wept when my neighbour shovelled the snow twice," she said.

Colin Smith expressed cynicism: "I don't trust this provincial government to do anything intelligent when it comes to changing long-term care. There's a standard play to undercut services and underfund services so it's really poor. So people get up in arms and then you can privatize it."

Smith moved in with his grandmother during the pandemic to care for her in Calgary. He stepped away from his work to do that.

Advocates have guarded optimism

Meanwhile, researchers and leaders of seniors-serving organizations seem more optimistic. They said the pandemic underlined the huge role families play and caught the attention of lawmakers.

Sharon Anderson, who researches family caregiving at the University of Alberta, said the recommendations last year matched what many in the sector had been calling for. But it's still unclear how the UCP government will fund and implement them; sector leaders hear various ideas floated during consultation meetings.

Figuring out non-medical support will be critical, said Karen McDonald, head of the Sage Seniors Association in Edmonton.

She chairs a provincially-funded task force trying to co-ordinate all pieces of the puzzle — the small community organizations that offer essentials such as meals, rides to medical appointments and social activities. The effort is called Healthy Aging Alberta. 

"Right now in Alberta, we have little pockets of those services. We don't have a systemic approach," she said.

She expects legislation and a plan this spring, but no large cash investment yet for broad-scale home supports.

"More likely the following budget, prior to the next election, would be my guess," McDonald said. "I would be surprised if it gets funded in this round. I think also they're waiting to see what comes from the federal government."

Prime Minister Justin Trudeau asked the minister of seniors to find ways to support people aging at home in his December mandate letter.

Giving care

The CBC team in Alberta is focusing this month on family caregivers — the husbands, wives, children and others who take on care of loved ones. Follow the news and First Person stories at cbc.ca/familycare.