As more and more Canadians find themselves caring for an elderly relative at home, new research shows that supports by provincial governments fall way short of what families require.
And the more severe the illness – for example, seniors with dementia and other complex medical problems – the less likely that adequate, publicly provided home care will be supplied. In fact, people with the most complex diagnoses often receive only a few more hours of home care a week than those with more moderate needs.
For the health system, it means that patients end up in hospital beds or nursing homes – far more expensive alternatives – when they could still be at home, says John G. Abbott, chief executive officer of the Health Council of Canada, which will release its comprehensive report on Monday.
On a more personal level, family caregivers are taking on heavier burdens, reporting high levels of stress and depression, the report says.
It's a situation that Judy Southon knows all too well. She realized she was in a crisis when she started self-medicating with sedatives meant for her ailing husband.
"My chest was so tight and I was so wired… I would give him two pills because he would be so agitated, and then one for myself," Ms. Southon said.
Her husband Vic was diagnosed with dementia in 2007 and Ms. Southon looked after him at their Toronto home for two years. She had caregivers help out for a few hours weekly, while she worked a contract job at a bank. She had to maintain their large home, cook meals, shovel snow – things her husband normally helped out with – and dipped into their savings to make ends meet.
"My evenings, my weekends, and all those other times when the caregivers weren't there, they were all devoted to him," she said. "It was work and then take care of him. I felt trapped."
When she could no longer manage, she made the difficult decision to put him in a long-term care home, where he died in September. "I felt inconsolably sad for him, but it had to be done or I would fall sick too," she said. "It was about self-preservation."
Provinces pay for home-care programs, with providers visiting patients' homes for a wide range of services – from bathing patients and looking after their personal care, to providing medical services, like administering injections. Home-care workers are supports for family caregivers, to give them a much-needed break.
The report found that over the past decade, provincial governments have significantly expanded home care and the number of recipients has grown by 51 per cent. But it's not enough, especially for high-needs seniors.
In Ontario, for example, most clients can get only 14 hours of home care a week, Mr. Abbott said.
"The vast majority of cases are getting 14 hours, maybe 15 and 20 hours," he said in an interview. "There are not sufficient hours, for what would be now the new typical case."
The report, released Monday, recommends a system that regularly assesses the needs of seniors and their family caregivers, one that would offer them more support as it is needed. Home care should be more integrated in the health-care system, the report says, with family physicians taking part in the home-care team.
Compared to many other countries, Canada invests more in long-term care facilities than home care. Governments need to consider shifting that pattern of spending, the report says.
Ms. Southon wishes she could have looked after her husband at home for longer, something that a more advanced home-care system could have provided.
"But at some point, you have to take care of yourself , or you'll have caregivers who are sick and then you'll have two sets of people who need help."
By the numbers
The Health Council of Canada's latest report is based on data from five regions – Nova Scotia, Ontario, Manitoba, British Columbia and Yukon. It found:
75: Per cent of home-care clients who are seniors
40: Per cent over the age of 85
20: Per cent with dementia (excludes Yukon)
95 to 98: Per cent with some difficulty with activities such as cleaning, cooking, grocery shopping, and home maintenance
23 to 41: Per cent who need help with personal functions such as bathing, eating, and toileting