The second annual Spotlight on Ontario’s Caregivers report builds on the inaugural 2018 report and for the first time demonstrates trends in the caregiver experience in Ontario. We are pleased to release this report in collaboration with the Ontario Caregiver Organization on the state of caregiving in Ontario.
The report, and the survey it is based on, looks closely at the role of the caregiver within the healthcare system, the type of caregiving tasks they are engaged in, the time and financial commitment required, and the impact of being a caregiver on their mental, physical and emotional state.
Our objectives for this survey are to better understand the caregiver experience, and see how it changes over time, in the following areas:
- who caregivers are caring for;
- what tasks caregivers are responsible for;
- where caregivers are turning for information and support;
- how caregiving impacts the lives of both the caregiver and the care receiver;
- how caregivers feel about their role as part of the healthcare team;
- what additional supports or information could help caregivers in their role.
The insights from the 2018 Spotlight report have already made a tremendous impact by identifying that caregivers want one point of access for information. To address this need, the OCO launched the Caregiver Helpline – a 24/7 resource that caregivers can call – or engage in a live chat between 7 a.m. and 9 p.m., Monday to Friday, to find local supports, get information about caregiving and get other important knowledge that caregivers have told us they need.
Our findings echo what both organizations see and hear in our everyday work. It also offers new insights about the caregiver experience in Ontario. Most notably:
- Caregivers believe their family member would not receive the same level of care or attention if they weren’t there.
- Many caregivers don’t think of themselves as caregivers. Instead, they consider themselves spouses, children, parents, in-laws who are just doing their duty. Once they realize that they’re not alone, and that they play an important role in their family member’s health care, it is often very empowering for them.
- Many caregivers hesitate to admit they are struggling. They often don’t ask for help or support because they feel guilty overshadowing the person they are caring for. And yet, the rates of stress and feelings of being overwhelmed paint an urgent picture of the need to recognize and support family caregivers in their role.
- The caregiving experience varies greatly and is influenced by many factors — where the caregiver lives, who they care for, the other responsibilities they have in their life, and the length and intensity of their caregiving experience.
Trends in caregiving
2018 vs. 2019 - what changed
- While similar numbers of caregivers are involved in organizing care, this year 56% of caregivers find the process difficult, compared to only 39% last year.
- Thirty-one per cent of caregivers are primarily responsible for paying for expenses this year, compared to 41% in 2018.
- This year, slightly fewer respondents were primary caregivers than last year, and as a result, slightly more were sharing responsibilities.
- The impact on finances is more pronounced this year – 32% said they had faced financial hardships compared to 22% in 2018.
- Seventy-nine per cent of caregivers see their role in the healthcare system as important now compared to 70% last year. Eighteen per cent of caregivers continue to think their role is the most important, and a similar percentage of caregivers feel that their healthcare providers see them as important members of the team.
2018 vs. 2019 – what remained the same
- There are no differences in who the caregivers are caring for when comparing the results from last year. That is, most caregivers are caring for parents who are dealing with aging-related health conditions.
- In 2018, we found that just over half of caregivers were part of the sandwich generation – that is, they care for an aging parent and are also parents to young children under 18 years old. That number remained the same in the 2019 survey.
- Emotional and transportation support are still the top tasks performed by caregivers, followed by household tasks and scheduling appointments.
- The proportion of caregivers who have the information they need about the health condition of the person they care for is similar to last year. Emotional counselling for both the patient and the caregiver is still one area where more support is needed, with 77% caregivers wishing for a ‘one-stop-shop’ that they can turn to for help and advice.
- Most caregivers continue to have a positive outlook towards caregiving and are generally coping well. But 31% are not coping well emotionally, and the high levels of stress and negative emotions found last year remain unchanged.
In addition to the survey, which quantifies the caregiver experience, we’ve also set up an online panel of caregivers from across Ontario who we turn to regularly to help us bring the qualitative side of the caregiver experience to life. This group provides deeper insights and examples of issues and themes that surface from the survey results. We also encourage you to visit the Spotlight 2019 website, which features caregiver stories and additional data.
This work, taken as a whole, underscores that supporting caregivers should remain an urgent priority. We will continue to make our knowledge, insights and results widely available to inform other efforts.