“Overworked and undervalued,” Canada’s caregivers are on the brink of a collapse, says report

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Liv Mendelsohn never thought of herself as a caregiver in the formal sense. 

Still, she was born into a caregiving role in an intergenerational household, taking care of her grandmother who developed Alzheimer’s. “Caring for her was just part of my childhood, part of growing up and really shaped how I think about family in many ways,” says Mendelsohn. 

She also cared for her mother who had ovarian cancer, through navigating the healthcare system, appointments, and palliative care. And now, Mendelsohn is also a caregiver as a parent, also supporting her ageing dad in accessing homecare support. 

Mendelsohn, the executive director at the Canadian Centre for Caregiving Excellence, explains that caregiving comes in many different forms: it can be a lifelong experience, it can be episodic, or happen for a very acute period of time. But most importantly, she says, “caregiving for me, and for many caregivers, isn’t an identity — it’s just part of being a friend, a neighbour, a spouse, a sibling, a family member.” 

Being a caregiver includes a myriad of duties, appearing different for everyone; but it can involve feeding, bathing, managing medications, navigating the healthcare system, making appointments, as well as being an emotional support system for a person. While it’s a really comprehensive list of activities, Mendelsohn says, caregivers often don’t give their efforts a second thought because they “do them out of love.” 

While caregivers are unpaid friends and family members who care for someone in their life, care providers are trained, paid professionals including direct support professionals (DSPs) and personal support workers (PSWs). Both caregivers and care providers engage in caregiving. 

However, neither caregivers nor care providers in Canada are getting nearly enough support to sustain their efforts. The 2022 Giving Care report by the Canadian Centre for Caregiving Excellence (CCCE) shows that caregivers are at a breaking point across the country. Burnout is impacting caregivers’ physical and mental health, the turnaround for paid care providers is high, and adequate support for caregivers is still missing across the country. 

Considering that one in four Canadians are currently caregivers, and one in two Canadians will become caregivers at some point in their life, the faults within the caregiving landscape are widespread. 

Mendelsohn explains that caregivers are not only essential for the country’s healthcare system, as they make up the largest part of it, but vital for healthy societies that are made up of strong social bonds which allow people to rely on each other. 

“Studies show that resilience long term isn’t about how much adversity you can handle, but how well you can recover between challenging events. And [caregivers] have not had an opportunity to recover; when they’re providing around-the-clock care and not getting sleep or exercise for time for themselves, it’s very hard to be resilient,” says Mendelsohn. 

The current state of Canada’s caregivers is under immense pressure

During the pandemic, caregiving saw some “very, very dark times,” according to Mendelsohn. Many family caregivers were shut out of congregate settings like long-term care homes and group homes. The ‘More Than a Visitor’ campaign took off during this time to bring attention to the importance of informal caregiving and the vital role family members play in caring for their loved ones. 

At the same time, a 2021 survey found that 87 per cent of caregivers experienced loneliness, 73 per cent experienced moderate to high anxiety and 69 per cent said they noticed a deterioration in their mental health.

The Giving Care report by CCCE states that 59 per cent of caregivers report needing to take breaks from their responsibilities but usually can’t because those duties often require their full attention and energy. However, when a caregiver is in distress, it also affects the person they are caring for.

Mendelsohn says that when she was managing her mother’s palliative care, along with her other family members, navigating the medical system was a major struggle. They spent a ton of time making phone calls, trying to access her medical results, or talking to specialists. 

“The amount of time we spent navigating the system felt like almost more time than we were able to spend with her, and it really depleted us,” says Mendelsohn. “You really want to be there for that person and spend time, especially in their final months and weeks, listening to them sharing stories but you’re spending time literally faxing offices.” 

While Mendelsohn says she was lucky to have a supportive workplace at the time, which allowed her to work from her mother’s bedside, she says that’s not the case for most caregivers. 

Also, many caregivers have to pay for caregiving costs out-of-pocket while also working their day jobs and trying to put food on the table. 

In 2020, caregivers in Canada reported spending $5,800 annually on care-related expenses. And 20 per cent of caregivers in Ontario reported taking out a loan or line of credit to pay for caregiving expenses, according to the Giving Care report. 

While balancing all their duties is a challenge on its own for caregivers, systems navigation is also a huge barrier in terms of getting support to figure out, “what am I eligible for? What kind of benefits are there from the government? What kind of support groups are there? How do I find these things?” says Mendelsohn. 

As families are smaller than ever and caregiving needs are greater than ever before, many Canadians like Mendelsohn are caring for multiple generations. And yet, “the caregiving itself, the love, the support, the day-to-day assistance with tasks is never a burden — but our system does create a burden and a barrier with insufficient support,” says Mendelsohn. 

Caregivers are undervalued and overworked within Canada’s healthcare and social care systems 

One of the most striking findings from the Giving Care report is that, “If all caregivers took a week off, every Canadian would experience the collapse of our care systems before noon on the first day.”

Caregivers spend 5.7 billion hours caring for people in their lives (4.2 per cent of the GDP) valued at $97.1 billion annually. There are more than 7.8 million Canadians over the age of 15 who provide about 20 hours a week of unpaid care. And when it comes to paid care workers, there is a 25 per cent shortage of them in the workforce. 

“Caregivers are the backbone of our healthcare system. For every hour of care that is provided in the healthcare system, caregivers are providing three hours of care. If you think about the ways in which caregivers are just overwhelmed and exhausted, knowing the critical role they play, it’s really scary to be honest,” says Mendelsohn. 

Despite the importance of care providers, they are wildly undervalued in terms of low wages, and lack of benefits and job security. 

In a recent study, 55 per cent of personal support workers (PSWs) in the Greater Toronto Area were considered low income, 86 per cent were precariously employed, 89 per cent were lacking paid sick days, and 74 per cent didn’t have extended health benefits. 

Mendelsohn describes caregiving as essential but “often very invisible” work. 

The Giving Care report also states that the adequate lack of support for caregivers translates to a loss of productivity for Canada valued at $1.3 billion per year.

“On a more existential level, when people feel that there’s no support when they’re caring for their loved ones, they lose faith in our system, in our government, in our communities and in each other — those really important bonds,” says Mendelsohn.

Canada needs to improve the way it cares for caregivers 

Care providers have coined this term called ‘muffin rage’ which entails employers giving token offerings to care professionals — like muffin baskets — instead of actually looking at the issues with working conditions and how to improve wellness in the workplace. 

“It’s not meeting people’s needs. It is extremely frustrating. And we know that both caregivers and care providers are really at a breaking point,” says Mendelsohn. 

What’s needed in the caregiving landscape is a number of things. For care providers, there needs to be better wages, better working conditions, and support systems built into the workplace that help people cope with the physically, mentally, and emotionally difficult work they do. 

Also considering these roles are often filled by racialized newcomer women, Mendelsohn says that employers “need to make sure that their working environments are safe, they’re valued, they’re well paid and that there’s a career ladder so people will stay because we also know that 50 per cent of care providers leave their workforce within five years.” 

For unpaid caregivers, they need better resources to navigate the healthcare systems, income support to manage out-of-pocket costs, caregiver-friendly workplace policies, respite care, and access support groups. 

Respite care, which is a service that allows primary caregivers a break from their duties through a temporary worker, is a key element that’s missing, says Mendelsohn. Though respite services are available in Canada, they are “patchy” and “inflexible” according to the Giving Care report. For instance, respite is available in some provinces and territories for those caring for seniors, but only for end-of-life care. 

Respite care can also be quite expensive. In some provinces and territories like Yukon, in-home respite is available for free, whereas caregivers in Nova Scotia may be eligible for publicly funded programs like respite care based on their income.

But the current state of respite care is not nearly sufficient to adapt to the needs of individual caregivers. 

“Caregivers will tell you they’re often told to engage in self care, and that’s important [to take] care of yourself and your mental health is important, but when there’s no opportunity to do that, when there’s no scaffolding and support and respite that allows you to do that it can become very frustrating,” says Mendelsohn. 

Social purpose organizations can play a critical role in building a better system for caregivers, according to Mendelsohn. Support for caregivers can be embedded within community services organizations — like community centres or libraries or newcomers centres. 

“Caregivers don’t exist only within the healthcare system. We exist in community,” she says. 

For instance, Mendelsohn says she imagines a world where caregivers can go to a library and find resources for the mental health support they might need, and even find respite services directly at a community centre. 

“Our dream is that Canada becomes the best place to give and receive care in the world,” says Mendelsohn. “But what that looks like is a system that is informed by the needs of people with lived experience. It looks like building a movement across the country of caregivers and of care providers. And it involves really pushing for policy change through government, and changes within our healthcare system to recognize caregivers as essential.” 

“When caregivers are supported, everyone thrives”

Caregiving, in its essence, is only made possible by the innate bonds between friends and family and loved ones. 

“When you step back and look at the whole picture, that’s really what community resilience is about: it’s people having families, neighbours, communities, and having the support and connections to each other to weather the ordinary hardships of life, to navigate through crises together,” says Mendelsohn. 

And It’s only when people lose these supports, “that’s when we start to see communities fray” and “that’s also when we lose out on what people have to offer,” she says. “We know that when caregivers are supported, everyone thrives. The caregiver thrives, the care provider thrives, and the person accessing care thrives.” 

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