Thank you.
On behalf of the Canadian Institute for Health Information, thank you for the opportunity to appear before the committee. I acknowledge that the land I’m speaking to you from today is on the traditional territories of the Wendat, the Anishinabe nation, the Chippewa, the Haudenosaunee Confederacy and the treaty lands and territory of the Mississaugas of the Credit. I recognize that it is now the home of many diverse first nations, Inuit and Métis people.
Today I will share information on the distress experienced by caregivers, including those who care for people with dementia and for people who require palliative care. While our data sources are rich, there are some limitations. We aren’t able to break down caregiver data by sex, because that type of data isn’t collected. Information about caregivers, such as caregiver distress, is collected indirectly through home care assessments that are done on the people who receive home care. However, these assessments don’t include the sex, age or ethnicity of the caregiver.
Our data shows that approximately 96% of Canadians who received home care services on a long-term basis had an unpaid caregiver. More than one in three unpaid caregivers in Canada were distressed. Distress was twice as high among people who lived with the individual they cared for, compared with those who did not. Among the caregivers who co-resided, about half were spouses and a third were adult children who cared for their parents.
Distressed caregivers spent an average of 38 hours a week providing care, which is the equivalent of a full-time job. Seven out of 10 caregivers in distress cared for someone who needed substantial help in at least one personal care activity. Personal care can include activities such as bathing, eating, dressing and personal hygiene.
Caregivers who cared for a senior with dementia were more likely to provide more hours of care. CIHI’s report, “Dementia in Canada”, found that caregivers of seniors with dementia provided an average of 26 hours of care each week. This is substantially higher than the 17 hours provided by caregivers of those without dementia. Caregivers of seniors with dementia were also more likely to experience distress than those caring for other seniors, and they were even more likely if the person with dementia displayed verbal or physical aggression.
There are also added financial challenges to caring for people with dementia, such as home modifications, professional health care or rehab services, assistance with daily activities, transportation, travel or accommodation, specialized aids or devices, and drugs. The Alzheimer Society of Canada estimates that caregivers of people with dementia paid $1.4 billion in 2016 in total out-of-pocket costs, and it projects that this amount will rise to $2.4 billion in 2031.
Caregivers play a critical role in supporting loved ones who receive palliative home care. CIHI’s report, “Access to Palliative Care in Canada”, found that almost all palliative home care clients had family or friends who provided care, making it possible for them to stay at home. Across Canada, these caregivers were mostly children or spouses of the palliative care client. About two-thirds of palliative home care clients lived with their family caregiver, compared with just over half of other home care clients. In some provinces, such as Alberta, you must have a family caregiver to qualify for palliative home care.
We found that nearly one-third of family and friend caregivers of palliative home care clients experienced distress. High rates of caregiver distress might signal a need for more effective and appropriate home care services and community supports to help caregivers manage care for both their loved ones and themselves.
While our data sources are robust, there are a few caveats to the information I have presented. Our data includes information on those caring for people receiving home care services for longer than 60 days, and not all jurisdictions are included. The data represents all regions of Newfoundland and Labrador, Nova Scotia, Ontario, Saskatchewan and the Yukon, all regions of Alberta except the Calgary zone, and all regions of British Columbia except the northern health region.
Thank you for the opportunity to present this information. I'm happy to answer any questions.