Canada is doing a poor job of caring for its caregivers, despite the growing need for these care providers, laments the Canadian Center of Excellence for Caregivers (CCEA).
Gathered since Monday in Ottawa as part of the first Canadian Summit for Caregivers, caregivers and political decision-makers have called for the development of a “national strategy” in response to the “crisis”.
“We are in a moment of crisis in the provision of care across Canada,” warns the director of policy and government relations of the CCEA, James Janeiro, emphasizing that caregivers “do not have the support they need to do this work “.
Today, many of Canada’s approximately 8 million caregivers struggle with issues of “loneliness” as well as “deterioration of their mental health, but also their physical health,” explains Mr. Janeiro. And around 90% of them would also need financial support.
Franco-Ontarian Sylvie Sylvestre, who was a caregiver for her parents for 10 years, knows something about this. His mother suffered from Parkinson’s disease and dementia; his father had “major depression and the beginnings of a neurocognitive disorder before he passed away.” “We need to think of us, the caregivers, when we experience a multitude of emotions. We need support, answers to our questions. Although working as a caregiver has been rewarding for me, there were times when I felt tired, and even stressed. »
For the northern Ontario resident, the “biggest challenge was defending the rights of [ses] parents”, unilingual French speakers, “who were vulnerable people”, and to “be their voice to have services in French”. She says she made numerous trips back and forth between her parents’ residence, in the village of Chapleau, and the cities of Timmins, 200 km away, and Sudbury, 400 km away, in order to try to obtain specialized services in French.
Mme Sylvestre, who is also a planning and community engagement officer at the Francophone Well-Being Network of Northern Ontario, has had to act as an interpreter several times. A risky practice, according to her, which further pushed her to insist on obtaining services in French. “I don’t have medical training, I can make mistakes. There is also no aspect of confidentiality for my parents. Maybe they didn’t say things they normally would have said because I was there. Did they give informed consent? » she asks herself.
“There is something that brings them all together [les proches aidants] : guilt, the feeling of not doing enough, exhaustion, isolation,” lists Magalie Dumas, deputy general director of L’Appui for caregivers. “If there is something we can change everywhere, in all provinces, it is to ask them how they are doing. »
Quebec ahead
Mme Dumas presented Tuesday afternoon, with other panelists, a workshop entitled Learning from Quebec. The province would in fact be “a generation ahead of the rest of the country” regarding “near assistance”, according to Mr. Janeiro.
Even if the wait was “long”, notes Mme Dumas, Quebec adopted a government action plan in 2021 to “recognize and better support” caregivers.
Ontario is within the “norm,” says Mr. Janeiro, acknowledging that the Ontario Caregiver Support Organization is doing what it can with its “fairly small” budget. “But Ontario is also the most populous province. So, that’s the norm, but we have 14 million people who live in Ontario and who live in a system that is not ahead of the rest of the country. »
“It took us a long time in Quebec. I know that the forces are in place in Ontario. […] It is certain that the impetus must come from the government,” says Mme Dumas. “I wish them a Marguerite Blais, with a total and unwavering investment in the cause of caregivers,” she adds, referring to the former Quebec minister responsible for Seniors and Caregivers, without whom Quebec “ would perhaps not be where it is today,” argues the panel.
A “national strategy”
A reaction is all the more “urgent” as the need for caregivers is growing. James Janeiro notes that their numbers are likely to “explode” in the coming decades, and that “roughly 50% of Canadians will be caregivers” during their lifetime.
This is explained by the aging of the population, the reduction in family size and the increase in the lifespan of people with disabilities. “It’s wonderful, but the health and social services systems were not built for the aging of people with disabilities. »
According to Mr. Janeiro, Ottawa should provide more funding to support caregivers, but also start a discussion with the provinces so that “the rest of the country starts paying attention to it.” “The health system is a provincial issue, but the provision of care and assistance for caregivers is bigger than that. There are questions of taxes, work, immigration, which are in the federal domain,” he emphasizes.
He indicates that he communicates regularly with the Liberal government, as well as with the Conservative Party of Canada, the New Democratic Party, the Green Party of Canada, and, more recently, the Bloc Québécois. “I find that he is interested, open to continuing the conversation. »
This report is supported by the Local Journalism Initiative, funded by the Government of Canada.