White Coat, Black Art

'The crisis is already here': Advocates say unpaid caregiving should be an election priority

Over 8 million Canadians have stepped into the breach to care for aging family members and loved ones who are chronically-ill or disabled. They are unpaid and overworked. This election, they want their work to be recognized, and to get meaningful support from the government.

Dr. Samir Sinha calls on federal parties to commit to a national seniors' strategy

Dr. Samir Sinha, who co-developed a proposed national seniors' strategy, is calling on parties this election to do more to support unpaid caregivers in Canada. (Taylor Simmons/CBC)
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One of the country's top geriatricians, who says the plight of unpaid caregivers in Canada is a national crisis, is calling on the federal parties to commit to a national seniors' strategy that includes support for caregivers as one of its main pillars.

"We're already paying the costs of not actually meeting the needs of caregivers, and those costs are only going to increase on a massive scale unless we be more proactive now," Dr. Samir Sinha, head of geriatrics at Toronto's Mount Sinai Hospital and the University Health Network, told White Coat, Black Art host Dr. Brian Goldman.

"The crisis is already here."

In its 2012 Portrait of Caregivers report, Statistics Canada said 8.1 million Canadians have taken on the role of caregivers for family members that are aging, chronically ill or disabled. It's the most recent nationwide appraisal of the state of caregivers.

"Many caregivers [told me]: 'Don't call me an informal caregiver, which is an old term. Call me unpaid," Sinha said. "There's nothing informal about me doing a gastrointestinal tube feed, or maybe helping to ... dress wounds or administer insulin.'"

In 2016, Sinha was part of a team to develop a national seniors' strategy. The study was funded by the Canadian Institutes of Health Research (CIHR).

Donna Thomson with her son Nicholas, husband Jim and daughter Natalie. Nicholas was born with cerebral palsy and other complex medical problems. (Submitted by Donna Thomson)

Their exhaustive report includes recommendations, such as making the Family Caregiver Tax Credit — introduced by the Liberals in 2017 — refundable.

Currently, caregivers can qualify for a maximum non-refundable tax credit of $4,667 per year, or up to $6,788 if their dependent is eligible for the family caregiver amount.

But Sinha notes that if caregivers are forced to take time away from work, their income drops, making it more difficult to qualify for the credits.

"This is not free money," he stressed. "By giving someone, for example, $6,800 a year for the care they're providing, that can save us 10 times that amount if that individual [they're caring for] ends up in a nursing home."

The provinces also offer tax credits for caregivers — refundable in some provinces, non-refundable in others — as well as between eight and 12 weeks of Compassionate Care Leave.

Party promises for seniors, caregivers

So far, five of the six major parties have released portions of their election platforms regarding senior care. But not all of them specifically include proposals for unpaid caregivers.

  • The Liberals proposed to widen the eligibility guidelines for the existing benefits and tax credits.
  • The Conservatives have promised tax breaks for seniors, including increasing the Age Credit by $1,000 per year, per senior.
  • Both the NDP and Greens mention implementing a national seniors' strategy.
  • The NDP and Bloc Québécois are calling to make the Caregiver Tax Credit refundable.
  • The People's Party of Canada has yet to release policy on this issue.

Marissa Lennox, chief policy officer for the Canadian Association for Retired Persons, says seniors and their caregivers need to be "top of the list" of discussions this election. 

"We just feel like no one of these parties has provided a platform that really reflects the profound changes that are happening with this group as a result of longevity, and caregiving is only one component of that," she said.

According to a 2015 report by the Canadian Home Care Association, caregivers are often forced to take leave of absences, turn down job opportunities or even quit their jobs entirely to care for their loved ones.

That translates to 18 million lost work days, or $1.3 billion in lost productivity, every year, the report says.

"We hear stories of people that have had to quit the best job they've ever had in order to take care of mom or dad," said Lennox.

"We hear stories about two-income families having to manage to survive on one income, so that one person can stay home and take care of mom or dad, or to take care of their spouse."

'No upper limit' to demands on caregivers, says advocate

The transition can take a great emotional toll as well as a financial one, says advocate Donna Thomson. She co-authored The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver with Dr. Zachary White.

Donna Thomson, left, and her mother Marjorie 'Tootie' Higginson, who died in 2018 at the age of 96. (Submitted by Donna Thomson)

"If you think of your life as a pie chart, and the caring responsibilities and the number of crises [that arise], that part of your life starts to take over and fill the pie chart and subsume work [and] family," said Thomson.

In 1975, she became her father's caregiver after he had three debilitating strokes. Her son Nicolas was born with severe cerebral palsy that requires complex medical care.

And her third call to duty began a decade ago when her mother — who died last year — began showing signs of dementia. At the time, she moved from the U.K. to Montreal to help her sister take care of her.

"There's a big difference between doing shopping for your mother every once in a while, and you know, setting up tube feeds … particularly [for] people who are home on ventilators," she said.

"The type of nursing that families are expected to take on today is unprecedented. And there is no upper limit to what families will be expected to do in cases of complex care."

Written by Jonathan Ore. Produced by Sujata Berry.


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