Too far, too big, too dangerous — families pitch alternative to large care homes ahead of budget

The long-term care home is so small, it could be mistaken for a large suburban house.

Ten beds, a kitchen and a shared living room — this is emerging as one key option for reforming Alberta's pandemic-battered elder-care system.

Many families of dementia patients are now behind the concept, and the government's own expert panel last May recommended 10 per cent of any new builds use this tiny concept. That would be a projected 1,600 new beds in small-scale facilities by 2030.

They're hoping for a sign these beds are coming in the provincial budget Thursday. 

Lisa Poole has an image in her mind of one moment that captures exactly why these small homes are needed.

Her father, John Poole, was diagnosed with dementia in his early 70s, a decade before he died. Lisa walked into his long-term care room once to find him naked, cowering in the corner of the shower. Three unfamiliar care staff were trying to rush him through his morning routine. His face was just fear and confusion.

"How would any of us feel if someone was trying to take off our clothes and we didn't understand why?" she said.

"The different faces all the time. When you're in the big facilities, I think they call them rotating staff assignments. Everyone is just set up for failure."

A care home around the corner

John was in several different care homes before he died, including one tiny, experimental one that had just three clients and round-the-clock care staff. By coincidence, it was just down the street from their family home. He and his wife would take walks together, stopping to chat with former neighbours. Stress levels in the whole family dropped.

But it was not sustainable; it closed 10 months after he moved in, said Lisa.

"We had a glimpse of when it can work well. It was amazing."

Advocates say care homes with roughly a dozen clients have become popular in various jurisdictions, including Saskatchewan, the United Kingdom and Australia. They feel more like a home, which is better for dementia patients. The model also makes it easier to create secure, accessible outdoor spaces and let clients participate in normal household routines, such as baking or cooking dinner.

Fewer staff take on a variety of tasks, so the same person might do some of the cooking, light housekeeping and social activities.

'They could have cupcakes'

Kim Brundrit, who is leading the lobby effort with Dementia Network Calgary, says a home like this would also make the transition easier when it's no longer safe to care for someone in their own home.

"If you could no longer care for your spouse or your mom but they could live down the street and you could go for walks in a familiar area and the grandkids could come over," she said. "Maybe it has a little play structure in the back and they could have cupcakes."

"Less of this: 'Oh, we're going to put all the dementia people over there and we're going to lock those doors and won't interact with them anymore.'"

Dementia Network families started lobbying for change last summer after seeing loved ones die or forget their families because of lockdowns and the spread of COVID-19 through large, aging infrastructure. They launched a research project to examine alternatives. Then Brundrit met with provincial officials in January and was encouraged by the interest shown. 

Her team is also hoping to work with Exquisicare, a private company that runs some of the few small-scale homes that already exist in Alberta. Together, they'd like to see if they can measure benefits such decreased infections and bed sores, increased mobility and other quality of life improvements, which could help Alberta Health regulate and target funding for this approach.

Exquisicare has three 10-bed care homes in Edmonton. For Dawn Harsch, a registered nurse who started the company10 years ago, the key item Alberta Health needs to change is the funding structure.

Province says change is coming

In principle, seniors living at home or in a facility can get their medical needs covered but pay out-of-pocket for food and accommodation, in both public and privately-owned facilities. But Harsch says she hasn't been able to access that subsidy for her clients. Her clients stay as they decline and die in those same surroundings. But they pay for all of it — $8,700/month — in her custom-built, 8,000-square foot Upper Windermere and Cameron Heights homes.

"It's all private. I tried (to get a subsidy), and I'm still trying," she said. "I've always supported that the funding should follow the patient where they choose. There needs to be choice in where seniors live."

The expert panel that recommended small-scale care homes last May suggested they would also provide better options for Indigenous communities and those living in remote rural areas. 

In a written statement, Alberta Health spokesperson Chris Bourdeau said the plan to transform the continuing care system will include small scale homes.

"(The transformation) includes expanding home and community care, a desire expressed by Albertans in the review of continuing care homes," he said. "This also includes increasing the number of smaller scale residences that provide continuing care services. We will share specific details with Albertans as they are finalized."

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. Visit cbc.ca/familycare to read more.