Groups including the Canadian Centre for Caregiving Excellence call caregiving the next frontier in public policy in Canada. They want to make the issue of care politically and socially unignorable.
In November 2023, hundreds of care providers, academics, physicians, non-profit leaders, patients’ rights groups, union members, and members of Parliament gathered in Ottawa for the National Summit on Caregiving.
It was the first summit that brought together carers from the illness, disability, and aging spaces, and pulling it off was a big lift for the fledgling Canadian Centre for Caregiving Excellence (CCCE), a program of the Azrieli Foundation founded to drive a care agenda across the country. “We were quite siloed in various parts of this space,” says Liv Mendelsohn, executive director of the CCCE. “[But during the summit] everyone was in the same place listening to really powerful stories about caregiving across the lifespan.”
“It’s such a relief when you’re a caregiver to be in the presence of other caregivers,” says Amanda MacKenzie, a caregiver herself and the national director of external affairs at the March of Dimes of Canada, which provides services for people with disabilities. “There was a degree of support that’s often missing in a caregiver’s day-to-day life.”
It was in that affirming space that the need for and potential impact of a national caregiving strategy sharpened. “I think we convinced everyone in the room that there’s something to the soup that we’re making here,” Mendelsohn says.
The care pressure cooker
A quarter of you reading this story are caregivers; in 10 years, it will be half. Among some groups and communities, including Indigenous communities, that number is even higher.
Care connects us as humans. At some point in our lives, we all give or need care. But care providers know that though it’s one of the most meaningful, rewarding, and fundamental human acts, the gaps in support for care providers and the lack of value our society places on care can make caregiving a deeply isolating and alienating experience.
I cared for my father through a six-year illness that saw him cycle from assisted-living facilities to hospitals to nursing homes. I was in my early career with few savings and little knowledge of how to navigate the healthcare system. My father could not communicate what he needed, and I dreaded making the wrong decision, or not giving him the care he needed. I fought for support, for information, for understanding, and for his dignity and mine. At his funeral, my brother and I looked at each other and accepted that we had done the best we could – much of it thanks to care workers and our imperfect and wonderful publicly funded healthcare system.
But I desperately wish we could have done more. And I wish it hadn’t been so incredibly difficult to do what we did.
Carers across Canada – children, parents, siblings, friends, and care professionals – are at a crisis point. Half of caregivers say they’ve experienced financial stress related to caregiving. Eighty percent say they feel lonely or isolated in what is a deeply emotional, high-pressure job. Care providers are the last line of defence between someone being at home or requiring support in a care setting. But the system and our society too often fail them. And the bureaucracy, financial pressure, and physical and mental toll of caregiving are becoming more significant in our increasingly stressed healthcare system.
A national caregiving strategy for Canada
It’s hard to go a day without encountering a news story about the crisis in care. The pandemic, the aging baby boomer generation, and the fact that many people with complex diagnoses are living longer have created additional pressure on already overburdened care systems and intensified the calls for change. Groups including the CCCE call caregiving the next frontier in public policy in Canada. “This is an issue that deserves both a policy response and a political response,” says James Janeiro, policy director for CCCE.
This is an issue that deserves both a policy response and a political response.
James Janeiro, Canadian Centre for Caregiving Excellence
The federal government recognizes the need for action. Former finance minister Chrystia Freeland’s 2021 mandate letter included the directive to change the Canadian caregiver tax credit – estimated to be accessed by only 10% of those who need it – into a refundable credit that could give caregivers $1,250 per year, regardless of whether they owe income tax. But the change has yet to materialize.
CCCE and others believe that a national caregiving strategy is necessary to call attention to the crisis in care, strengthen the collaboration and coordination between care organizations across the spectrum of care, create a framework and momentum for action, and platform the voices of care providers. “Our goal is that this strategy be very specific, achievable, and funded. It also needs to really represent the voices, ideas, and concerns of caregivers and care providers across the country,” Mendelsohn says.
It’s not the first time that a national caregiving strategy has been proposed. The Senate Special Committee on Aging recommended it in 2009. Since then, other countries have rolled out strategies. In 2022, the United States introduced the National Strategy to Support Family Caregivers, a framework with 500 actions that can be implemented by all levels of government to support the physical, psychological, and financial well-being of family caregivers. Canada is now one of the few high-income countries without a national strategy.
What a national strategy could do is elevate the role of caregivers beyond something that we just expect of families to do. It could amplify and accelerate action on the issue.
Amanda MacKenzie, March of Dimes
The CCCE wants to change that. In early 2024, it began consultations with Canadian caregivers to hear their priorities in the areas of healthcare, social and community care, and support for working caregivers and care workers. “What a national strategy could do is elevate the role of caregivers beyond something that we just expect of families to do. It could amplify and accelerate action on the issue,” Amanda MacKenzie from March of Dimes says.
The idea got a boost in April 2024 when the Liberals included the promise to consult on a national strategy in the federal budget. While the announcement was welcomed by many, some balked at the idea of more consultations when people need support now. For CCCE, “it really renewed the wind in our sails,” Janeiro says. “We pivoted from being the ones beating down the feds’ door telling them that they should do this to being the ones beating down the feds’ door saying how to do this.”
All of the parties recognize that this is a ticking time bomb that’s just below the surface across the country.
James Janeiro
At the time of writing (in November 2024), there had been no movement on the feds’ promise. In July 2024 there was a change of ministers on the file, when Minister of Labour and Seniors Seamus O’Regan left government and Minister Steven MacKinnon stepped in. (We requested an interview with MacKinnon but received no response.) With a federal election expected in the spring, it’s doubtful much progress will be made. But the CCCE isn’t letting up. “We’re having these conversations with all the parties across the spectrum so that whoever forms government after the next election is primed to take this issue on and run with it on day one,” Janeiro says. “All of the parties recognize that this is a ticking time bomb that’s just below the surface across the country.”
In late November, CCCE announced a National Caregiving Caucus consisting of MPs from five federal parties whose focus will be to ensure that the voices and needs of care providers are included in federal policies and regulations. The CCCE plans to release its national caregiving strategy in February.
Bridging the data gap
One of the challenges facing care advocates is missing data. Care work is an enormous economic enabler, but it’s not valued in an economic framework. Caregivers take an enormous burden off our healthcare system, yet their work doesn’t show up in our GDP, and often isn’t valued socially.
Many caregivers don’t self-identify as such, which can make getting a picture of who provides care and what their needs are difficult. Employers lack data on the carers in their workforce. The picture of care in Indigenous communities also needs more research.
Much of the data we do have is from Statistics Canada’s Canadian Social Survey, which found that in 2022, 42% of Canadians aged 15 or older had provided unpaid care to children or adults with a long-term condition or disability, and that that care was provided primarily by women. The estimated value of all household and care work performed in 2019 was between $516 and $860 billion. (The lower number is calculated through the time-use method, while the higher number is calculated through replacement cost.)
We have a cultural bias against care.
Ito Peng, Canada Research Chair in Global Social Policy, U of T
Ito Peng, the Canada Research Chair in Global Social Policy at the University of Toronto, is building a clearer picture of care to inform policy-making. Her multi-country study, Care Economies in Context, is mapping paid and unpaid care work within the household, the community, and the paid labour market and is calculating the dollar value of unpaid care work. “We have a cultural bias against care,” Peng says. “My thinking is that if we really understand and value care work, then we will have to recalibrate the wages of care workers and provide them with fair working conditions. We will also have to provide financial and material supports for people who are providing unpaid care work at home or in the community.”
The CCCE’s 2024 Caring in Canada survey reported on the experience of more than 3,000 caregivers and providers. Eighty percent of paid care providers said they’ve considered changing careers. Unpaid caregivers, meanwhile, said their care duties required an average of 30 hours per week. One in five earned less than $20,000 a year; 44% reported feeling anxious. “It can be quite isolating if you’re living it every day,” Mendelsohn says. “Your world can shrink or your world can grow with supports. When you’re supported, you have more people enter your world and support you and the person you’re caring for. When you’re unsupported, your world can shrink because all you’re doing is surviving.”
More than 60% of working caregivers are balancing work and care, often without their employer’s knowledge. The estimate is that 500,000 full-time employees leave the labour market every year because of caregiving responsibilities. “The number one challenge we face is that people often do not self-identify as caregivers until they’re burnt out,” says Christa Haanstra, founder of 4C Strategy and the lead for the CCCE’s Working Caregiver initiative, which is mapping the working caregiver experience in Canada. Survey respondents told Haanstra that HR teams sometimes aren’t aware of the policies and supports and can be hesitant to share information for fear of making mistakes.
The non-profit sector, with its majority female workforce, is deeply affected by these dynamics. Many workers provide care at work and at home. While budgetary constraints can challenge charitable organizations to establish working caregiver supports, Haanstra believes the sector is in a good position to support caregivers by exploring flexible work policies and valuing their unique skill sets.
You look at the future of work skills, and those are the skills we want. You want creativity. You want people who can think dynamically . . . who can make sense of complex information.
Christa Haanstra, CCCE Working Caregiver initiative
The skills piece is important. Providing care requires problem-solving and communication skills, emotional intelligence, good judgment, and an ability to manage uncertainty. “You look at the future of work skills, and those are the skills we want,” Haanstra says. “You want creativity. You want people who can think dynamically. You want people who can make sense of complex information. All of those skills are what caregivers have.”
Haanstra is working with public- and private-sector partners to better understand the needs of working caregivers and identify total rewards and employee supports – caregiver days, employee resource groups, access to navigation services – that can help working caregivers stay in their careers, and help employers better benefit from their skills.
At the University of Alberta, Grant Bruno, associate professor in the Department of Pediatrics, recently launched the Indigenous Caregiving Collective, which aims to surface the realities and needs of First Nations, Métis, and Inuit caregivers. “This collective is very much an opportunity to start to gather experiences and perspectives from Indigenous caregivers across Canada because I feel like our experiences are unique and diverse,” he says. “[What I see] in community is that almost everybody’s been a caregiver at some point in their lives. Caring is a sacred responsibility.” Bruno says that the fact that many who need care have to leave their communities to get it disrupts care relationships and makes it more difficult to gain an understanding of holistic needs.
Policy options
There’s a range of policy options that could be implemented to support caregivers and unlock an estimated $1.3 billion in lost productivity. Increasing income benefits for caregivers is a top priority. “If you’re a caregiver,” Janeiro says, “there should be some mechanism to get some cash in your pocket for two reasons: you may be working a lot in order to cover your costs, or your care responsibilities are so high that you’re not able to work, which means it’s harder to put food on the table and pay your rent.”
In addition to implementing the proposed changes to the Canadian caregiver tax credit, the government could remove restrictions that prevent people from accessing funds in their registered disability savings plans when they need them and could make changes to income-tax-eligible medical expenses. Advocates had hoped that the disability tax credit announced in 2024 would provide meaningful income for people with disabilities but were disappointed by the complex eligibility requirements and the $200 limit.
More and more people are becoming caregivers, but they still have to work . . . People have to make desperate choices.
Nancymarie Arsenault, Hospice PEI
At the provincial level, only Nova Scotia and Prince Edward Island provide caregiving allowances. Nova Scotian caregivers can apply to receive up to $400 per month in financial support. PEI, where one in seven hospital beds holds a long-term care patient, introduced a new benefit this year that provides people 65 and older who need care with up to $1,250 per month to fund homecare costs. The program was oversubscribed within months of being launched, and there are questions about whether the people who need it most can access it. Nancymarie Arsenault, executive director of Hospice PEI, says the need is acute. “People are exhausted. More and more people are becoming caregivers, but they still have to work. We’re into our heating season on PEI. People have to make desperate choices. People call us and say, ‘I have to go to work and I don’t know what I’m going to do with my mom who needs help.’”
Care providers also flag the need for better access to home and respite care and access to social prescriptions. A strategy could also involve other supports, including training for medical students and healthcare workers on how to provide holistic care. Bruno stresses the importance of prioritizing family-centred, wrap-around supports in Indigenous communities that consider the needs of the person receiving care as well as those of the caregiver and the family.
Our family was saved time and anguish by a free Quebec program (my father lived in Montreal) that helped us understand the different levels and types of institutional care in the province and figure out which would best support my father’s needs. Investing in funded care navigators who can help families figure out the patchwork of supports and services and provide psychosocial support could make a big difference for families.
Advocates say these supports need to be underpinned by federal policy initiatives that increase affordable and appropriate housing, reform the immigration system to ensure stability and dignity for care workers who come to Canada under the temporary foreign workers’ program, and invest in the healthcare system to increase care-worker wages and improve working conditions.
Toward a care-inclusive economy and society
To change the story for care workers and caregivers, we need to change the beliefs and narratives that surround care work.
A 2023 report from the U.S.-based FrameWorks Institute found that the predominant narrative around care is that it’s low-skill work that’s less important than other economic activity. People view care work as essential for our society but outside the economy. It’s often perceived as a job of last resort, or as its own reward.
A fundamental goal of a national caregiving strategy must be to change the narrative about care work and fully articulate the value it provides society and what we stand to lose in economic and human terms if we don’t support carers. A fundamental part of this work involves acknowledging and addressing the outsized burden of care carried by women and racialized people.
CCCE and its partners hope that a national caregiving strategy will make the issue of care politically and socially unignorable and will drive recognition that care work is skilled, dignified, necessary, and worthy of proper compensation. And that more rooms that caregivers walk into are as affirming as that one in Ottawa in 2023.
