Thank you. I appreciate that.
Once again, I'll direct the committee back to the CCA report, which very thoroughly outlines almost every aspect of the discussion today and where the uncertainties lie.
Where there are uncertainties.... As you know, we have to live with a certain amount of uncertainty, but a certain amount of uncertainty can be reduced through getting the priorities of the questions and funding the research to close those gaps.
There are at least 15 different recommendations, because there's very little known. The scant evidence we have, which Professor Poirier has mentioned, is a handful of cases from the Netherlands. We've conditioned a lot about Alzheimer's and certain forms of dementia, but those aren't the only circumstances in which advance requests for MAID will take place.
I would make a recommendation that there be ring-fenced funding. I sit on one of the institute advisory boards. There are mechanisms that exist to get funding available to trigger research; plus, provincial research institutes can provide that funding.
To Professor Poirier's points, he has scales, but how valid are they? What are the sensitivity, specificity, and positive and negative predictive value? As we know from living through COVID, testing has thresholds. Here, the mistakes that we make on judging and acting on scales are irrevocable. There's quite a lot of existential weight to the decisions that are being made.
What I would like to make a really high priority is support for substitute decision-makers across the spectrum of care. Dr. Chung has spoken about the caregiving burden, not just for dementia and Alzheimer's, but for any older adult with multiple concurrent conditions. We have a crisis in elder care in Canada right now.
MAID advance requests are a small tip of an iceberg of a larger social problem. We have to ask ourselves and problematize why it is that people fear dementia so much. As everybody has spoken about, they've witnessed things they find horrifying, but why is it horrifying? Why have we created the conditions where care for dementia is so terrifying?
It's something that we created. We can rewrite that narrative through investment in care and investment in caregiver support. This kind of fearful, negative narrative that I'm hearing about is not necessarily inevitable. As Professor Poirier has said, Alzheimer's is a neurodegenerative, irreversible condition, but we can do an awful lot with social support to make this narrative a lot less despairing than what we've heard.
Thank you.