Sharing the work - 2025 05 18

Boyd, K., Winslow, V., Borson, S., Lindau, S. T., & Makelarski, J. A. (2022). Caregiving in a Pandemic: Health-Related Socioeconomic Vulnerabilities Among Women Caregivers Early in the COVID-19 Pandemic. The Annals of Family Medicine, 2845. https://doi.org/10.1370/afm.2845

Eales, J., Fast, J. E., Duncan, K., & Keating, N. C. (2022, February 20). Family Caregiving Worth 97 billion.pdf. University of Alberta, Department of Human Ecology.

I have this question about the quality of life and the quality of care and who benefits from the work being performed by family caregivers. 

In a family caregiving setting, the Primary Caregiver serves multiple roles, vertical and horizontal, within the caregiving organizational structure. This means there is an unprecedented integration of intelligence about the work and managing the operation of a home-based caregiving bed. This is an extraordinary level of responsibility and authority assumed by the Primary Caregiver, it is exhausting when it is not properly supported by the healthcare system, it is also a super power in terms of strategic care planning and risk mitigation.

We know that the moment a primary caregiver attempts to access resources from the healthcare system, they step into a world of silos and fragmentation. There is no comprehensive system of caregiving intelligence to tap into. In fact, one of the reasons a Primary Caregiver will give up on accessing external resources is the labyrinthian network of organizations, offices, personnel, and forms that require time and energy to navigate. This is also why there are calls for 'Health Navigators' to be either hired on behalf of the Primary Caregiver, or purchased at the cost of the Primary Caregiver. 

We are starting to discuss the cost of supporting a home-based caregiving bed, including supporting the time a Primary Caregiver spends taking care of their Care Recipient. 

I think it is important that we also discuss the benefit accrued to those in our society who do not shoulder the work of Primary Caregiver. If one quarter of Canadian households are contributing family caregiving time, that means three quarters of Canadian households are benefiting from that work to some degree.

These can be people who have a Primary Caregiver in their family, who is taking on the time and responsibility of looking after their Care Recipient, leaving them free pursue career, wage earning, and leisure activities. 

These can also be people who benefit from the absence of a Primary Caregiver from the regular workforce. These are people who do not have family caregiving responsibilities, who have time to invest in their career or wage earning, and who step in to take up the work left undone because their work colleague is unavailable due to caregiving responsibilities. The removal of the Primary Caregiver from their work team means they have opportunities for advancement and promotion.

These are people who may or may not have family in institutional long term care. The work of the Primary Caregiver keeps a bed free in an institutional settings. The waiting lists for these beds are growing longer. The cost of building new beds is extremely expensive. Every care recipient who can stay home under the care of a Primary Caregiver, is making a bed available for a care recipient who either does not have family to step in and fill their Activities of Daily Living gap, or they do not want to be a burden to their families, and elect to put themselves into institutional long term care.