Valoriser et épauler les proches aidants, ces alliés incontournables pour un Québec équitable.
A Profile of Caregivers

The current trend in the health and social services system is to prioritize home care for patients, for the longest time as possible. This approach is supported by patients, caregivers and the community organizations that help them, but it also presents some challenges. For example, it is often because of the generosity of caregivers that services the health system can no longer offer are provided. However, given that social structures undergo changes (smaller family, geographical fragmentation, importance of leisure time, etc.), caregivers might feel a sense of persistent exhaustion. Currently, measures to support caregivers are incomplete or uneven as they are planned according to the situation of the person being helped and not in consideration of the caregiver and his or her needs.

In 2012, a fourth of the population over 15 was a caregiver (Government of Canada, 2013). This proportion tends to increase (Fast, 2015) and is not necessarily perfectly accurate since the caregiver role is not formally defined (minimum number of hours per week, level of complexity of tasks, etc.) and many caregivers (especially parents) do not identify themselves as such (Thibaut & Vogels, 2011).

Estimations indicate that 15% of caregivers are under 15 years of age (Benjamin Weiss, 2014).

More than a third of caregivers (35%) spend more than five hours per week providing care and support, and 10% of them provide more than 20 hours (Government of Canada, 2013).

25.7% of caregivers take care of two people in need of help and 10.5% take care of three or more people (Institut de la Statistique du Québec, 2015a). There are no statistics specific to the province of Quebec, but global ones suggest that the average caregiving period is of 4.1 years, with 26% of caregivers exceeding 5 years (IFOP & MACIF, 2008). This time frame tends to increase with the ageing of the population and with health improvements (e.g., a person with the Down Syndrome could hardly live to 35 years old in 1970 and can now hope to reach 50 years old).

Moreover, global statistics suggest that about a third of the caregivers provide care to non-elderly people (IFOP & MACIF, 2008).

Being a caregiver is an extra role, in addition to that of spouse, parent, children, citizen, worker, and so on. Yet, about 40% of caregivers feel they did not have the choice to take on this role (Institut de la Statistique du Québec, 2014).

16% of caregivers support either a friend or a neighbor (Government of Canada, 2013).

Most caregivers (54%) in Canada are women (Government of Canada, 2013) but the proportion of female caregivers is higher in Quebec (57.8%). On average, female caregivers spend more time for help, and the care structure remains tied to the traditional role attributed to women (household chores, body care, etc.). However, fewer women take care of many people in need simultaneously.

Caregivers, cornerstones of the healthcare system

According to the Ministry of Health and Social Services (MSSS), caregivers provide 85% of the total help for senior citizens. For example, for a person requiring 22 hours of care, the caregiver provides 16 hours and 30 minutes while the CLSC provides 45 minutes (Kempeneers, Battaglini, & Van Pevenage, 2015). Caregivers have to face the scarcity of resources for home care services, waiting lists to obtain accommodation services (in CHSLDs, specialized facilities for handicapped children, and palliative care) and the fragmentation of care services (Quesnel-Vallée & Taylor , 2017). In 2012, 26.6% of caregivers provided care at least once a week (Institut de la Statistique du Québec, 2015b, 2015c).

Replacing the work of caregivers wouId cost between $ 4 billion and $ 10 billion (Kempeneers et al., 2015), and would require hiring 1.2 million full-time professionals (Fast, 2015).

Exhaustion and impoverishment of caregivers

The level of exhaustion among caregivers is very important: 64% of caregivers have decreased their social and relaxation activities, almost 50% of them have reduced the time spent with their own spouse, and 34.5% of them have changed, canceled or stopped taking their holidays (Institut de la Statistique du Québec, 2014). In Quebec, there are neither reliable statistics on the level of stress, depression, and psychological distress of caregivers, nor on other mental and physical health problems resulting from the caregiving role they play. This lack of reliable statistics applies for all caregivers, notwithstanding the situation of the person being helped.

In Canada, caregivers spend on average $ 7,600 per year for the person being helped, regardless of their initial income level. 20% of caregivers experience financial insecurity (Fast, 2015).

Non-refundable tax credits only benefit the wealthiest Quebec residents. In addition, eligibility criteria for these tax credits are restrictive and do not correspond to many situations. Many caregivers cannot obtain them.

Balancing caregiving work, study, and family responsibilities is a major challenge.

More than 57% of caregivers are employed (Institut de la Statistique du Québec, 2014), but few work-care or study-care reconciliation measures are available for them.

Caregivers who are not in charge of senior citizens would lose about $16,000 per year by reducing their paid work hours (Fast, 2015).

Caregivers make up 30% of Canada’s workforce (Fast 2015)

If caregivers were to reduce their paid work hours, Canadian businesses would lose $ 1.3 billion a year, not to mention replacement costs, vacation pay, hiring, etc. (Bernier, 2015).

In Canada, assessments suggest that caregivers’ reduced paid work hours and reduced productivity because of absenteeism cost $ 641 million in lost income tax revenues and additional social benefit payments to the government (Fast, 2015).

Caregiver students who cannot obtain scholarships because of their part-time studies drop out of school (Bélanger, Landry, Ndiaye, & Caouette, 2017).