SPOR Evidence Alliance NOTIFICATION - 2023 07 31

 

"We are thrilled to announce that your submitted health research topic, “Cost-effectiveness of home care versus assisted living facilities for individuals requiring additional supports” has been selected as one of the 20 priority topics for funding as a research project by the SPOR Evidence Alliance." 

Canada's Strategy for Patient-Oriented Research (SPOR), created by the Canadian Institutes of Health Research (CIHR)

I submitted my health research topic last year in September 2022. At that point I was approaching my first anniversary of caregiving for my frail elder mother, who moved in with me on November 1, 2021. 

Mom's birthday is November 1, 1930. She had just turned 91 when she aged out of her place in mental health group housing, where she had lived since 1982. 

Throughout the summer of 2022 I had struggled with my own health and well-being as an inordinate proportion of the work of caring for Mom had fallen to me and my husband. I did not know it at the time, but our experience mirrored findings in health research that family caregivers face a high likelihood of negative socio-economic impacts as a result of providing family caregiving for family members who can no longer fend for themselves. 

While my immediate family members were embarking on month long sailing holidays and pursuing career development, I was struggling to maintain my full time paid work as a professional project manager while providing 24/7 caregiving coverage for Mom. I was blindsided by the amount of work and responsibility I had taken on, even we though we thought we had done our due diligence in the year leading up to the Mom's move home.

Our preparations started one year prior to Mom's move-in. These preparations included consulting with the staff in Mom's group home, consulting with Mom's family doctor and working to set up our private family home to provide caregiving infrastructure. Preparing our caregiving infrastructure included renovating the bathroom in Mom's living space for a no barrier shower, setting up Mom's bedroom, investigating paid support services such as in-home caregiving, laundry service, housekeeping services, home maintenance services, and completing renovation projects on the property to free up our time and attention to providing caregiving infrastructure for Mom.

When we decided to bring Mom home, it was a historical fulfillment. Mom had waited all those years in group home to pack her bags and come home again. "We waited a long time for this," she said, as she rested on her new bed.

The stress I was experiencing and my growing resentment from feeling taken advantage, taken for granted, and neglected led me to start researching the conditions for family caregiving. Was I alone in my difficulties? 

One of the biggest stressors my husband I were facing was the financial impacts of family caregiving - we were forgoing market rental income on our basement suite, my capacity to grow my consulting business was disabled by the amount of care and attention I needed to give Mom, and my full time employment with my main client reached its natural conclusion. I was now unemployed and struggling to figure out what employment scenario I could manage while looking after Mom.

What I wanted to know was how had the cost to myself and my family of providing a caregiving bed so my Mom could Age in Place been factored into the policy that led this initiative? How was the cost of our family-funded caregiving bed accounted? How was it supported as part of the overall provision of health services within our local health authority? How did the cost of the support we were providing compare to the cost of similar support in an institutional setting? Was it possible to conduct a line by line cost analysis and compare the flow of resources provided to the institution compared to the flow of resources provided to our family caregiving bed?

It turns out there is no evidence-based accountability for the policies that are offloading healthcare infrastructure to private families. There is no tracking or traceability for the measuring the costs of providing family caregiving.

In assessing my health topic for further investigation, the review board found there were no reviews identified during the scoping literature search. This demonstrates the gap in knowledge and hence, the deficit in policy and practice when it comes to understanding the cost of providing family caregiving and how we can adequately support families who are providing essential care infrastructure to the healthcare system.