There are thousands of informal caregivers living within the territory of our CIUSSS. And as the population ages, it is very likely that the number will continue to increase rather than decrease.
We spoke with Farah Messekher, a coordinator for informal caregivers, and Guethvah Petit-Frère, senior advisor responsible for the project of Measure 48 of the governmental action plan for caregivers, to learn more on the subject.
For starters, how do we define an informal caregiver?
Farah: “An informal caregiver is someone who provides assistance to someone they know, sometimes to more than one person, without necessarily living in the same household as the person who is receiving that help. The person receiving their help has temporary or permanent disability. That disability may be physical, psychological, social, or of some other nature. They could also be a senior whose autonomy is decreasing with age.
An informal caregiver shares an emotional connection with the person they are helping, although they may or may not be related. They provide informal care, freely and willingly. That support may be occasional, short-term, or long-term, and can be stopped at any time.”
What are some examples of informal caregiving?
Farah: “There are many forms of informal caregiving. It can be assistance with personal care and housework, providing transportation, coordinating services, medical appointments, administrative or legal affairs, and much more! It can even be a matter of emotional support.”
It would seem informal caregivers may also need some support from time to time.
Farah: “Quite true. Providing emotional support, for example, can trigger exhaustion, depression, or anxiety for an informal caregiver. As a result, an informal caregiver’s health and quality of life can be affected, and it may be difficult for them to continue providing that support. To prevent such outcomes, we need to take care of our informal caregivers by giving them access to resources such as respite or psychosocial support. Most of all, it is important that they know about the resources that are available to them.”
Our CIUSSS is in the process of rolling out a very important project with certain informal caregivers. Can you tell us about it?
Guethvah: “Let me start by mentioning that after the adoption of the Act to recognize and support caregivers and to amend various legislative provisions in 2020, the government developed its first Action Plan for Informal Caregivers (2021–2026). It consists of four axes with 61 measures that are intended to recognize and support informal caregivers.
Our project falls under Measure 48 of that plan. The goal of that measure is to work with informal caregivers on implementing and assessing innovative strategies. The project title is The contribution of male informal caregivers and informal caregivers from ethnocultural communities to the assessment and uptake of their specific needs within the CIUSSS de l’Ouest-de-l’Île-de-Montréalʺ.
There are a number of phases to this two-year plan, including a literature review, a survey and discussion groups, an assessment of best practices, identification of innovative improvements to services, an action plan, and knowledge transfer. The second phase, which includes the survey, began on June 3. Informal caregivers within our territory who are part of these target groups can help to improve services and the decisions that affect them by sharing their experiential knowledge.”
How is the survey being done?
Guethvah: “We are taking a multi-pronged approach including phone calls by a polling company, direct mail, collaboration with our partners, and promoting it within the CIUSSS. We have a number of colleagues who are also informal caregivers. We hope to reach at least 1000 respondents within our target group by the end of the survey.”
The survey is available here.
What will the data from the survey be used for?
Guethvah: “The data collected will help us to better understand the specific needs of male informal caregivers and informal caregivers from ethnocultural communities within the territory of our CIUSSS. People from those two groups are the least likely to see themselves as informal caregivers and who are the least likely to use the services available to them. By adapting our services, we can help to improve their quality of life and that of the people they are caring for.”
Can you tell us about the rights that informal caregivers have?
Farah: “Informal caregivers are legally recognized, and as such they have rights. This can include, for example, paid days off, short-term leave benefits, federal employment insurance benefits, or federal compassionate care benefits. Please don’t hesitate to discuss these with your manager.”
Some helpful resources:
- Info-Social: 811
- Caregiver Support Helpline: A professional and confidential service that provides counselling, information and referrals, from 8:00 a.m. to 8:00 p.m., 7 days a week (1-855-852-7784/info-aidant@lappui.org)
- Québec government web page: quebec.ca (enter “caregiver” in the search bar)
- Balancing Work—Informal Caregiving
“There are more than two million informal caregivers in Québec. One third of them do not see themselves as such,” say Mss. Messekher and Petit-Frère.