i knew that people needed a dementia village, but i didn’t have $100 million to get the idea up and running. with a colleague, i developed a plan for a day program so that caregivers can go to work and not worry about the health and safety of their loved one. we met with recreation therapists and used their model of support, and it took quite a while to get a team together and receive approval for charitable status. we finally got the pilot for 10 people — we used the wonderful facilities of a technical college, we tried it for 10 months, and eventually, we expanded the program to 12 participants right before covid hit. when it was safe to do so, we started doing small group walks outdoors for a few months and now, we have a day program that’s available to people with young-onset dementia two days a week (it runs from 9 a.m. to 4 p.m.). we’re also starting a half-day program for those who can’t handle a full day.
did you rely on investors to help get youquest off the ground?
not really. when we started, we received a donation from the centre for aging and brain health innovation (cabhi) because they liked our model, and we also had some financial support from other organizations such as rotary, lions and the alberta government. we have a good following, and we are supported by families affected by dementia, not by investors. the spouse of someone who recently passed away from young-onset dementia asked that people donate to youquest through their obituary, even though they didn’t attend youquest, so we ended up receiving some nice donations. that said, fundraising is ongoing as we have a staff of high-quality professionals and only charge our participants a nominal fee.
what have you learned through your work?
i’ve learned that we get attached to families and when they transition away from our program to assisted living, it’s devastating. we almost need time to adjust to those changes, to grieve and mourn and maybe even visit the person at assisted care. we’ve also learned how important it is that caregivers have respite and while caregivers have always been included in our mission, we’re learning every day about their needs — that they need information, time, and support, and that their kids need help too. we hear of kids skipping school or engaging in destructive activities as a way to cope with their parent’s declining cognitive health. through youquest, we’ve learned that there are just so many people whose needs have to be managed when their loved one is diagnosed with dementia.