Building In-Community Caregiving Capacity - 2026 05 17

 

Iris blooms in the first rays of sun as we move closer to solstice and the early morning sun moves further north, rising over the shoulder of Mount Seymour.

It has been a while since I last posted on this topic. In the meantime, I have been writing songs and making drawings to make meaning of life: what it means to be seventy years old, what it means to be a woman in times of catastrophic system collapse, what it means to rebuild my life after looking after Mom, what it means to live in a world that no longer has my Mom's smiling face and warms hands nearby.

I have taken time to recover from the mental, emotional and physical burnout after 3 years of operating a long term care bed for Mom in our home. I am still recovering from the financial impact of those years. At the same time, as I recover, I continue to think about the systemic deficiencies that contributed to the hardships we endured because we decided to bring Mom home. As I recover from my own caregiving experience, I notice my desire to be part of a societal solution to the continuing, growing crisis of long term care infrastructure, is rebounding, as well.

What we learned from our Evidence Alliance funded research into family caregiving and research priorities was disturbing. First, although there is a concerted push to move long term care into communities and into family home settings, there is no research quantifying the costs that are associated with providing long term care infrastructure in those settings. Second, we did not find any existing research priority setting to study these costs toward developing data-based evidence for rationalizing expenditures - whether they are flowing to institutional settings or home-based settings.

In the past year, with global geo-political disruptions to supply chains, the cost of new construction has sky-rocketed, leading our provincial government, here in BC, to pause construction projects for long term care institutional facilities. The projected cost per bed for new construction of long term care beds is over $1m per bed.

The need for long term care infrastructure is increasing, not decreasing. This long term care capacity needs to serve both aging populations and those with medically complex conditions who cannot fend for themselves. 

Without research priorities to support research into the cost of operating long term care beds in family home settings, we are going to be starving the functional infrastructure of families providing care to those family members who cannot access institutional beds, or who prefer to care for their families in-home.

We need to turn our attention away from building new institutional infrastructure that we cannot afford, and look at realistic, manageable solutions for community-based, in-home long term care infrastructure. We need to understand what is needed to create thriving communities of in-home long term care beds. We need to stop the unsustainable stress, responsibility and socio-economic vulnerability that is going to erode our capacity and capability to provide long term care in our homes. This is a realistic, manageable approach to finding solutions to our ongoing crisis of health care failure, health system overload, and the care of our medically complex, and aging, population.

What would it mean to build meaningful in-community supports to ensure a thriving in-home long term care infrastructure?

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