A caregiver is a person who provides care to someone because of their relationship with the person who needs care. They can be family or friend, and they provide support and care to an individual with an illness or disability without being paid. A new study has found they’re the backbone of the health-care system.
According to a report by the Canadian Centre for Caregiving Excellence (CCCE), a quarter of Canadians identify as a caregiver, and half of Canadians will become a caregiver at some point.
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In Nova Scotia, the number is even higher, with just over 30 per cent of Nova Scotians giving some form of unpaid care to another person with a long-term condition or temporary illness.
“It’s probably due to the fact that we have a larger seniors population in Nova Scotia,” said Jenny Theriault, executive director at Caregivers Nova Scotia.
With so many Canadians take on caregiving roles, many say they feel isolated and unsupported.
“Recognition is important,” says Penny MacAuley who is her husband’s main caregiver.
“The fact that a caregiver is devoting 96 per cent of their life to making sure that other person is being well taken care of, that’s a lot of time devoting to someone other than yourself.”
MacAuley took on the role of caregiver during the pandemic when her husband was diagnosed with dementia. She says she’s fortunate to be able to send him to Northwood’s day program, but that’s only 24 hours a week, leaving her to act as a full-time caregiver the rest of the time.
“I’m in charge of his care, physically, mentally, everything and that’s huge, it’s a burden. A burden of love, but it’s still a burden.”
MacAuley is not alone.
The study by the CCCE, nearly 70 per cent of caregivers report a deterioration of mental health. It’s part of why the Centre was created – to look at the needs of caregivers.
“Caregiving truly is the invisible foundation of health care for Canada,” said Theriault.
The amount of time Canadians are providing unpaid care is significant. On average, nearly 8 million Canadians are providing about 5.7 billion unpaid hours of care. That represents about 4.2 per cent of the country’s GDP. But because there is little support from health care and social services, many caregivers are reaching a breaking point.
Theriault says its important to recognize the important role caregivers play.
“If caregivers took a week off, our health system would probably collapse.”
“Because caregivers are holding so much in their hands right now,” said Theriault.
The CCCE study found significant policy gaps and recommends creating a coordinated approach to caregiving, This would include a national caregiving strategy, provincial caregiving legislation, and international caregiving recognition.
The study also calls for further financial supports for caregivers and further funding to improve working conditions of paid care workers.
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In Nova Scotia some efforts have been made. The province has a caregiver benefit which provides $400 a month to caregivers with a net annual income of $26,165 or a household income of $41,165 or less. The province also provides funding through the supportive care program but caregivers like MacAuley say the funding doesn’t go far enough, and many caregivers don’t quality for the benefits.
“Whatever the province tends to give caregivers is hardly enough, it pays for a few hours of caregiving a couple weeks, but that’s not really enough,” said MacAuley.
Minister for Seniors and Long-term Care Barbara Adams says they are looking at other ways to support caregivers and are currently funding a strategy through Caregivers of Nova Scotia which is gathering information on caregivers’ needs through focus groups and surveys.
“We know the toll on caregivers has increased, especially during COVID,” said Adams. “We want to know from Nova Scotians what kind of support they need and where they need it.”
The findings of this project are expected to be presented to the government in the summer.