The global COVID-19 health crisis is crystallizing certain problems in contemporary society. This is the case both in terms of social inequality (income, isolation, access to services, living conditions) and the importance placed on ensuring the mental health of individuals.
While the WHO’s definition of health gives mental health the same importance as physical health1, mental health is too often associated with psychiatric diagnoses, thereby widening the gap between us (i.e., those who are “well”) and them (i.e., those who are sick). Nevertheless, this health crisis and its impact on our daily lives that forces us to rethink the way we live makes us aware of the challenges to our mental health. Dealing with events, adapting, and adjusting reminds us of the need to take care of ourselves and those around us.
Overview of caregivers’ experiences in times of pandemic
Shining a light on the involvement of caregivers
The pandemic has also shone a light on the involvement of loved ones with the most vulnerable among us. As a result, we are witnessing a collective awakening to the reality and day-to-day lives of informal caregivers, their essential role for the smooth functioning and continuity of care and services from professionals, as well as their precarious situation and the impact on their physical and mental health.2,3,4
In 2012, a quarter of the Québec population reported playing an informal caregiving role for someone they know. In 2016, 35% of Quebecers devoted at least one hour of their time to a senior close to them. However, informal caregiving is difficult to quantify for a number of reasons to do with the complexity of the caregiving relationship within the family. First, acts of caregiving by loved ones are varied and often invisible (groceries, transportation, education, homecare, coordination of services). They are also specific to each situation of vulnerability (chronic pathologies, mental health problems, aging, etc.), but also to the age of the loved one receiving the care (child, adult, senior). Second, it is important to note that some people do not see themselves in the role of informal caregiver and therefore do not identify with this social group. Supporting loved ones can be a core value of family and human relations. And this normalization of helping a loved one who is vulnerable is also reinforced by the social context.
In fact, we should note that a bill to recognize the status of informal caregiver just passed on Wednesday, October 29, 2020 (Bill 56)
Two generations of informal caregivers
We should also add that the current context creates new situations of informal caregiving to protect the most vulnerable during the COVID-19 pandemic. We are seeing two generations of informal caregivers helping loved ones, and these informal caregivers can have different needs in mental health.
Among these informal caregivers, we should distinguish between those who were helping loved ones with decreasing autonomy before the pandemic and those who have taken on this role with their loved ones to compensate for health-related restrictions on social participation. The first generation was already dealing with complex situations that impact their resources and their mental health and are therefore more at risk for emotional distress and burnout. The new generation of informal caregivers may find itself overwhelmed by stress and not yet have the resources and strategies to deal with the mental, emotional, and logistical burden of being an informal caregiver.
Recognizing the involvement of informal caregivers with their loved ones, and therefore their impact on society as a whole, is a first step in guidance and support. The second step would involve shifting from merely witnessing the mental health challenges informal caregivers face to becoming an ally and actor. Being an ally means listening to loved ones to suggest avenues for action that reflect their needs.
“informal caregivers show endless kindness to the person receiving care, and they also have the duty to be kind to themselves; society and the community have the duty to help informal caregivers and be kind to them” (Comité national d’éthique sur le vieillissement, 2019, p.52)
National Caregivers Week November 1-7, 2020
As part of National Caregivers Week, marked by the COVID-19 pandemic and the passage of Bill 56, it is important to propose community initiatives to respond to calls from informal caregivers. Different resources are available to informal caregivers in the form of information guides, support groups, and a helpline.
Finally, taking care of themselves and protecting their mental health are among the most common recommendations for informal caregivers. It is also important to remember that illness or situations of vulnerability can change interpersonal relationships, and the caregiving relationship can complicate social relationships. The caregiving relationship can lead to a blurring of the family (or personal) role and the caregiving role. Protecting your mental health means protecting the quality of these relationships with loved ones, so they are not defined solely through the prism of caregiving. One strategy is to separate out moments devoted to daily caregiving and to ensure you also have moments of sharing and affection with the loved one (i.e., time to talk, for example, a phone call). Every individual has resources and the ability to adapt, but it is important to remember that each family has its own skills that should be valued.
“an informal caregiver is someone in their own right, and caregiving is part of their life, not all of it, not an end in itself, and quite often, not even a choice” (Comité national d’éthique sur le vieillissement, 2019, p.52)
1 World Health Organization (WHO) Mental health: strengthening our response. Available at https://www.who.int/news-room/fact-sheets/detail/mental-health-strengthening-our-response
2 Lecomte Anne Marie (May 19, 2020) “Invisibles,” les proches aidants à domicile sont au bout du rouleau. Radio Canada. Available at https://ici.radio-canada.ca/nouvelle/1703839/quebec-proche-aidant-domicile-alzheimer-confinement-epuisement-covid-19
3 Lecomte Anne Marie (May 19, 2020). Les appels au secours des proches aidants explosent en raison de la COVID-19). Radio Canada. Available at https://ici.radio-canada.ca/nouvelle/1703839/quebec-proche-aidant-domicile-alzheimer-confinement-epuisement-covid-19
4 Parry M., Bjørnnes AK., Nickerson N., Warkentin K., Burnside H., Hemani S., Norris C., Peter E. (2020). Family Caregivers and COVID-19: A Rapid Integrated Mixed Methods Systematic Review. CIHR Report, August 24. Available at https://cihr-irsc.gc.ca/e/documents/PARRY-CMH-Initial-Knowledge-Synthesis-2020-06-22.pdf
Comité national d’éthique sur le vieillissement. La proche aidance: regard éthique – document de réflexion du Comité national d’éthique sur le vieillissement. (October 2019) Available at https://publications.msss.gouv.qc.ca/msss/document-002434/
Informal caregiving and mental health