The Ontario Caregiver Organization (OCO) today released the results of its annual province-wide survey on the experience of family caregivers with a focus on the impact of COVID-19. The third “Spotlight on Caregivers COVID-19 edition” survey, conducted for OCO by Pollera Strategic Insights shows a substantial rise in the time and responsibilities of caregiving and the number of caregivers, with one-third being new to caregiving in the past year. The burden on caregivers’ mental health and seeking support for the person they care for is also of concern.  Just over half (54%) of caregivers say that it has become more difficult to manage their caregiving responsibilities since the COVID-19 outbreak.

Prior to the pandemic, Ontario had an estimated 3.3 million caregivers — those family members, friends and neighbours who support someone with an illness, chronic disease or acute health care situation.  “COVID-19 has put the caregiver role in the spotlight more than ever before and we have increasingly heard from caregivers that the pandemic has turned many of their lives upside down,” said Amy Coupal, CEO of Ontario Caregiver Organization. “In addition to previous COVID-19 research and our ongoing dialogue with caregivers, our Spotlight on Caregivers report gives us further data so that we can better meet the needs of caregivers and continue to adapt and respond with new resources and programming to improve the caregiver experience during the pandemic.”

The report finds more hours are being spent on caregiving responsibilities with 31 percent of caregivers providing more than 10 hours of care per week compared to 26 per cent before the pandemic. Caregivers are spending more time doing many tasks compared to what they did before the outbreak, particularly providing emotional and behavioural support (50% and 25% respectively), providing transportation and completing tasks around the home.

The mental health of caregivers is a focus of OCO’s resources and programs, and not surprisingly, the pandemic has left many caregivers feeling lonely, isolated and depressed. Nearly half (47%) of caregivers are dealing with the care recipient’s anxiety and stress over COVID-19 and its restrictions and are unable to take the breaks or access the social interaction they need. As a result, more than half (52%) find it stressful to manage their own emotions. Of greater concern for caregivers is that more than three-quarters (77%) of caregivers supporting someone with a mental health issue or addiction find it difficult to access mental health support for the person they are caring for.

The survey also shows that caregivers are more in need of respite, but understandably amid COVID-19 restrictions, have a harder time getting a break. Overall, six-out of-ten (59%) caregivers admit that they need a break from caregiving, with half (50%) saying they need a break on a monthly basis.  This is significantly higher than last year’s findings when only 38 per cent needed a break on a monthly basis.

The financial impact for caregivers is notably increased. Four in ten caregivers reported that they are incurring higher costs for caregiving and have to use more of their personal finances to pay for expenses due to COVID-19. The financial toll of caregiving was growing even before the pandemic. This is a trend that will need special attention, especially as our province goes into the economic recovery period.

“While we can’t predict how long this pandemic will last, we do know that there is a growing number of new caregivers and many of those that were caregivers before the pandemic who need extra support,” adds Coupal. “The impact of COVID-19 on caregivers is likely to last for years to come.”

The OCO has increased its promotion of its 24/7 caregiver helpline and created new resources and programs in response to the pandemic. The free resources available in multiple languages include new and experienced caregiver toolkits and tip sheets on topics ranging from improving mental health to finance and COVID-19 illness contingency planning, among others. Weekly educational webinars hosted by OCO or its healthcare partners and a peer support program that provides 1:1 and group online support to caregivers is also available. The OCO will be expanding the peer support program to include a caregiver matching and mentoring virtual community in the new year. In addition to providing supports directly to caregivers, the OCO has updated and made available the Partners in Care Toolkit to hospitals, long term care, and other congregate settings to support re-engaging caregivers in a meaningful way. Based on the results of this in-depth survey, more resources will be added in 2021.

The OCO extends its gratitude to all Ontario caregivers and to those who are part of its online caregiver advisory panel, and many working groups which gave the organization an opportunity to road-test ideas, get real-time feedback on its approaches, and explore caregiver issues and themes with caregivers themselves. Their shared experiences inform all of the OCO’s work, including this report, its programs and services, and emerging priorities.