YouQuest: A Wellness Community for People with Young-Onset Dementia

John and Cindy McCaffery sit together out in a nature setting

Award Date: 2018

Project Lead(s): Beverly Hillman, Recreation Therapist Consultant

Project Title: YouQuest Pilot: A Wellness Community for Young Onset (U65) Dementia

What is the issue?

People with young-onset dementia (diagnosed under the age of 65 years) are vulnerable and isolated. They are not eligible for seniors’ benefits and too young to benefit from programs for the elderly. Careers end abruptly, income disappears, and the diagnosis changes roles and responsibilities for the entire family.

What did we do?

We designed the YouQuest service together with people with young-onset dementia and their care partners. Our goals were to provide a safe, welcoming place to belong in the community, offer choices for active recreation, and create a reliable support network for families. With a team of recreation therapists and volunteers, participants set fitness goals based on their interests, strengths, and abilities. Participants co-planned social, physical, and cognitive activities at the Southern Alberta Institute of Technology Wellness Centre, on campus, and around the city. They also enjoyed the outdoors, restaurant lunches, and live music with our house band. We tested the weekly service with ten families for a year to obtain their feedback before expanding it.

What did we find?

Families enthusiastically endorsed the YouQuest format as a relevant, dynamic service that provides direct and practical support to care partners. Participants appreciated making their own choices for purposeful activities with peers, feeling connected to others, and being more confident in daily life. Care partners valued the opportunity to access meaningful, affordable support that eliminated the need for referrals and wait times. After one year, YouQuest had a waitlist of 20 families wanting access to the service.