National strategy must recognize caregivers as 'backbone' of society: centre

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Canadians need help looking after family members who are aging, sick or have disabilities, and many caregivers are seniors who need help themselves, says a new report calling for a national strategy that recognizes the mental and financial toll of the job.

The report released Wednesday by the Canadian Centre for Caregiving Excellence highlights the need for compensation for caregivers, respite, easily accessible home care and workplace policies to support people juggling work and care.

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Last summer, the centre commissioned an online survey of caregivers, provided the same survey to various organizations and posted it to its website, where it invited more input. Nearly 3,100 respondents across the country included about 200 paid care providers, among them personal support workers in the health-care system.

The survey found that respondents provided an average of five hours of care every day. Half said they experienced financial stress in the past year because of their responsibility, and one quarter reported poor mental health, the report says. It also found that 80 per cent of respondents who were also care providers in the health-care sector considered changing careers due to issues such as low pay and inadequate staffing.

Kristie Mar of Vancouver knows the strain of looking after someone while struggling to find support and fearing for the future.

From the age of 16, Mar would rush home from school to care for her mother, who had schizophrenia and an eating disorder.

“It was pretty difficult because you can't really tell your friends at that age what's going on,” she said of the stigma that kept her silent.

“Even among family members it was really difficult to get anyone on board. And it's difficult to get mental health access so there was just no one to help.”

Mar said she tried unsuccessfully to get support from several organizations as her mother became sicker and was eventually hospitalized.

Now 25 and a third-year medical student at the University of British Columbia, Mar said she was surprised to learn during a recent six-week psychiatry rotation that her caregiving situation was not unique.

“The sad truth is people don't talk about it,” said Mar, adding medical schools need to educate students about caregiver burnout and refer them to services, which should be bolstered.

“There's no start time, there's no end time. Even when you're not home, you're thinking about it,” she said of the caregiving duty.

Kristie Mar, shown in a handout photo, started caring for her ill mother at 16 and is hoping a national caregiver strategy will recognize those who often put their own lives on hold to look after their loved ones. (THE CANADIAN PRESS)

Mar eventually connected with Family Caregivers of BC, one of four such support groups in Canada.

The others are in Alberta, Nova Scotia, Ontario and Quebec, and work is underway to create one in New Brunswick, said James Janeiro, the centre's policy director.

Caregivers in other provinces could contact the national office to get connected to services near them, said Janeiro, adding their work is mostly undervalued.

“Caregivers are the unseen and largely unheard backbone of society. They're taking care of people in the background. We don't hear from them. We don't see them because they're working so hard,” he said.

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One fifth of caregivers are over age 65 and more likely to need help themselves, said Janeiro, adding the centre is hoping that specific policies will be implemented to support that group as the population ages.

An estimated 88 per cent of senior caregiver respondents to the survey want an income tax credit to help with everyday costs, the report says.

The pandemic shone a spotlight on the contributions of caregivers when they were barred from hospitals and long-term care homes.

The federal government committed in this year's budget to launch consultations on the development of a national strategy to support the “care economy.”

This report by The Canadian Press was first published May 1, 2024.

Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.