Canadian caregivers are “in crisis,” which jeopardizes their own health and the health of their care recipients, a new white paper reveals.
Canadians are living longer with disabilities and multiple medical conditions, and current systems are not designed for increasing demand, according to the Canadian Centre for Caregiving Excellence (CCCE), which released the white paper on November 7. The organization warns that if all caregivers took a week off, “every Canadian would experience the collapse of our care systems before noon on the first day.”
Lack of a public policy response, the report notes, “jeopardizes the mental, physical, and economic well-being of caregivers, care providers, and those in need of care.”
“Clinicians should be aware that when caregivers are in distress, outcomes are worse for both caregivers and care recipients,” CCCE Executive Director Liv Mendelsohn told Medscape Medical News. “A 2021 study showed that over 50% of caregivers report a deterioration of their physical health, 67% report mental health challenges, and 87% experience loneliness. The status quo is untenable.”
When caregivers are recognized as an essential part of the team, however, outcomes for the whole family are better, she said, citing information in the white paper.
By the Numbers
The 100-page report, “Giving Care: An Approach to a Better Caregiving Landscape in Canada,” draws on a review of the academic and gray literature, a jurisdictional scan of best public policy practices for supporting caregiving globally, and focus group sessions with caregivers, care providers, sector leaders, and other stakeholders.
Among the highlights of the literature review are the following findings:
Caregivers and care providers make up the largest part of Canada’s healthcare system, contributing more value to the national GDP than the agriculture, forestry, fishing, and hunting industries combined.
Unpaid caregivers (typically family and friends) and paid care providers (personal and developmental support workers), represent the largest portion of Canada’s healthcare and social support system, providing about 3 hours of care for every hour provided through the rest of the healthcare system. This is equivalent to the work of 2.8 million full-time paid care providers.
Caregivers spend 5.7 billion hours caring for people in their lives (4.2% of GDP), and this care is valued at $97.1 billion annually.
About 59% of caregivers report needing to take breaks from their responsibilities, and many others report feeling lonely or isolated.
Of employed caregivers, 15% reduce their work hours, 10% turn down job opportunities, and 26% take a leave of absence from their job to provide care.
Only 4% of caregivers report that a provider, government agency, or coordinator oversees care, and those that do are frequently limited to either institutional care or community care, but not both.
Ottawa, Canada-based caregiver Helen Ries, whose brother Paul has Down syndrome, told Medscape that the biggest challenge is “trying to get back to where we were pre-pandemic,” when Paul had supports that enabled him to be more independent. The responsibility for providing that support has fallen mainly to Ries.
“Caregiving is not easy, and that’s all there is to it,” she said. “I wish there was a good respite solution so I could feel comfortable going away for a period of time with my husband. The truth is you can never 100% leave someone and trust the care solution is working as you expect.”
Ries described her love and concern for her brother. “He is one of the most important people in my life. He is the only connection I have left to my family and my family history. I am only happy and well when he is happy and well.”
Overdue, but Doable
Many caregivers are like Ries, said Mendelsohn. “They feel that the burden of caregiving is not caring for their loved one but doing it in a system that doesn’t adequately support them, doesn’t provide enough respite care, and where they feel invisible.”
Physicians can play a big role, she said, “by identifying who the caregivers are for their patients, recognizing them as partners in care, and referring them to supports. Physicians need to know what resources are available and also feel comfortable having conversations with care recipients and their caregivers, and asking what the caregiver needs to be able to continue giving care.”
The CCCE is advocating for health systems to allow physicians to do this kind of work and be compensated for it, which currently is not the case. “This is long overdue and also very doable,” said Mendelsohn. “This is something we can do within our system now while we work to make sure there are more supports and that the resources are there.”
Meanwhile, she recommends that clinicians consider taking “Caregiver-Centered Care,” a course developed by Jasneet Parmar, MD, associate professor of family medicine at the University of Alberta, Edmonton, Alberta, Canada, and recently picked up by Alberta Health.
Physician Groups Agree
“As a family physician, I see firsthand the impacts patients and their caregivers experience when they lack access to longitudinal primary care providers, including later diagnoses, sequelae of untreated chronic diseases, mental health [problems], worsening frailty, and gaps in routine child and newborn care,” Kathleen Ross, MD, president-elect of the Canadian Medical Association, told Medscape. Healthcare workers feel this pressure and are reporting increased mental health challenges as they try to respond to patients’ needs, she added.
Dr Kathleen Ross
“The decrease in availability of primary care appointments leaves caregivers few options for scheduling, adding to their burdens and leading to conflict with office support staff and providers when schedules are tight,” said Ross. “This is morally distressing to providers, caregivers, and patients alike. Physicians are leaving community practice due to the pressures of not being able to provide the healthcare patients need, an option not available to caregivers.”
The Ontario Medical Association (OMA) “has recommended the provincial government increase access to respite for family caregivers through home and community care organizations by offering more respite beds in congregate settings,” OMA President Rose Zacharias, MD, told Medscape. “The OMA also says healthcare providers must make time to ensure caregiver well-being (eg, making room for a private touchpoint at a loved one’s appointment) and extend assistance when needed.”
Furthermore, she said, OMA has proposed that the government support caregivers by “creating more hospice beds and palliative care services to improve the patient experience and reduce pressures on emergency departments.”
Follow Marilynn Larkin on Twitter: @MarilynnL.
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