Opinion

Can we afford to keep ignoring the health of unpaid caregivers?

Unpaid caregivers are the backbone of the Canadian health-care system, providing personal, physical, social and financial care. They provide 75 per cent of care services at home, representing approximately $24 to $31 billion in unpaid work annually. By 2035, the annual unpaid caregiver contribution to the Canadian health-care system is estimated to be $128 billion.

Yet, unpaid caregiving remains invisible in public policy across Canada.

There will be 10.4 million seniors living in Canada by 2037, a growth of 68 per cent between 2017-2037. Many seniors (4.4 million) will be living in Ontario. With Ontario’s health-care system in crisis, struggling with a shortage of nurses, unpaid caregivers have taken on complex responsibilities, from basic support to managing home-based virtual and in-person health care.

There are 4 million unpaid caregivers in Ontario, 63 per cent of whom have hit the breaking point of physical and mental exhaustion, no doubt spurred on by the pandemic. While the pandemic exacerbated the challenges of obtaining medical care and support for all care recipients, unpaid caregivers also experienced fewer supports from family, friends and their own health-care providers. COVID-19 also revealed the state of long-term care in Canada, causing people to be less inclined to enter long-term care. This, combined with improvements in home care, has more Canadians opting to age in place rather than moving to retirement homes or long-term care facilities, increasing the demand for unpaid caregiving and bringing along potential health and financial risks.

Caregiving policy at all levels of government needs to move beyond a patchwork of programs and supports to provide a strong infrastructure that meets current and future health-care demands. The Canadian Centre for Caregiving Excellence (CCCE) has produced a white paper that sounds an alarm about the need for a public policy response across Canada; a response that creates a coordinated effort to address the needs of unpaid caregivers. At a minimum this includes a national caregiving strategy and provincial caregiving legislation (e.g., expanded leaves, tax benefits). Unpaid caregivers must have a voice in policy planning as gaps are addressed.

We lack data on the needs of these unpaid caregivers and have little information on race and ethnicity, indigeneity, and sex and gender.

Diversity also must be addressed. One of the fastest growing segments of our aging population are seniors who identify as members of a racial or ethnic minority and those born outside of Canada. Yet, we lack data on the needs of these unpaid caregivers and have little information on race and ethnicity, indigeneity, and sex and gender.

To address these data gaps, we have formed a national interdisciplinary research team and developed an unpaid caregiving survey. Our team includes investigators, unpaid caregivers, and community partners. The survey will help us learn more about unpaid caregiver experiences so that relevant caregiver policies and guidelines, supports, and interventions can be developed. We aim to ensure a broad sample to reflect the diversity of the Canadian population and will recruit unpaid caregivers from the three largest racial and ethnic communities in Canada; people who are South Asian, Chinese or Black as they represent 60 per cent of the Canadian racial and ethnic populations. The average time to complete the survey is 20 minutes and all responses are confidential. Please contact the investigative team if you need assistance completing the survey.

Engaging unpaid caregivers directly in policy creation and research will contribute to more meaningful transformation and improvement for health care in Canada. Unpaid caregivers must be a priority focus if we are to sustain the future of our healthcare system. We absolutely cannot afford to keep the health of unpaid caregivers in Canada invisible.

 

Disclosure Statement

Monica Parry is leading this national and interdisciplinary research team to learn about unpaid caregiver wellbeing across the intersections of race and ethnicity, sex, age and gender in Canada. If you are an unpaid caregiver over 18 years of age and interested in completing a survey, please contact unpaid.caregivers@utoronto.ca for more information.

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Authors

Monica Parry

Contributor

Monica Parry, NP-Adult, PhD, FAAN, FCAN, is a Professor at the Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, and a Nurse Practitioner, Cardiac Program, Kingston Health Sciences Centre.

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