August 6, 2020 — Unpaid caregivers play a vital role in our health systems by supporting people with health challenges to stay at home or in the community. Providing care to a family member or friend can be demanding, with profound emotional, mental, financial and physical impacts.

High rates of caregiver distress may signal a need for more effective and appropriate home care services and community supports.

By improving home care services and community supports, caregivers could be better equipped to provide the proper care for those who wish to stay at home, and be less likely to be distressed. Those resources could include more hours of formal home care, better access to meal delivery services, respite care or help navigating the health care system. — Tracy Johnson, Director, Health System Analysis and Emerging Issues

96% of individuals receiving long-term home care have an unpaid caregiver.  More than 1 in 3 of these caregivers are distressed.

Unpaid caregivers in Canada

Our new analysis shows that more than 1 in 3 unpaid caregivers of individuals who receive home care in reporting provinces and territories experience distress — which can include feelings of anger or depression, or the inability to continue with caring activities.

Caregivers in distress spend the equivalent of a full-time job providing care, an average of 38 hours per week  This is 2 times the hours provided by caregivers who are not distressed.

How many hours a week do caregivers provide support?

Caregivers who are distressed spend an average of 38 hours a week providing care — the equivalent of a full-time job. This is twice the number of caregiving hours provided by caregivers who are not distressed.

7 in 10 caregivers in distress care for someone who needs substantial help in at least one personal care activity.   Personal care activities include brushing teeth, washing face, bathing or showering, eating, dressing, toilet use and getting in and out of bed.

Who is more likely to be distressed?

Caregiver distress rates are higher among those who support people requiring greater assistance with personal care such as bathing, dressing and personal hygiene.

They are also twice as likely to be distressed if they care for a person with communication difficulties or behavioural problems.

Caregivers who live with the person receiving home care are twice as likely to be distressed as those who do not. Among those who live together, about half are spouses and a third are adult children caring for their parents.

How is COVID-19 affecting caregivers?

The data used in this analysis pre-dates the COVID-19 pandemic. While the extent of the impact of COVID-19 on caregiver distress and access to home and community care is not yet known, CIHI’s data represents a baseline from which progress can be measured over time.

Additional resources

Take a closer look at the proportion of new long-term care residents who potentially could have been cared for at home.

Learn about these new long-term care residents

Related resources