YouQuest Young Onset Dementia Association
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Mission Statement
YouQuest creates community for people with young-onset dementia and their families for active health and well-being.
About This Cause
If you have a brain, you're at risk of developing dementia! WHY WE EXIST Tough to diagnose and incurable, young-onset dementia destroys the dreams and aspirations of men and women in the prime of their lives. Careers abruptly end. Income disappears. Loved ones and friends become care partners as families face a life-changing crisis without a safety net. “YouQuest gives my husband purpose and normalcy; it’s the ultimate guilt-free day for me.” – Daina, Care Partner FILLING THE GAP Calgarians with young-onset dementia and their families have very limited access to the unique support they need. Ineligible for seniors’ benefits, and too young to gain value in programs for the elderly, YouQuest is ‘a place to belong’ that encourages active recreation with peers in the community. John and Cindy McCaffery’s Story: At age 48, John McCaffery had to leave a career he loved because he “couldn’t figure it out anymore.” Well organized at work, he was finding it hard to keep client information in order. He failed new software testing – a first for this “techie.” He was not thinking straight. John’s physician sent him for lab tests, brain scans, and a two-day neuropsychological assessment. The neurologist diagnosed John with frontotemporal dementia, which explained why his executive skills were faltering, and his brain was slow to process new information. The doctor broke the devastating news that John would never work again as he signed a long-term disability application. Without a career, John spent long hours at home by himself. His friends and neighbours were busy at work. Cindy was at the office, and their two kids were at school. Gregarious and outgoing, he missed the social aspects and challenges of his job. He lost his community connections as an active soccer coach, badminton dad, and Rotarian. An athlete since childhood, he missed cycling and the weekly martial arts classes with his kids. Bored, restless, and agitated at home alone, he said, “I have a bad case of perpetual cabin fever.” John and Cindy investigated support services and found that most were designed for more sedentary seniors, not active people in the prime of life. Much too restless for chair yoga and not interested in crafts, John was not a candidate for these programs. Cindy knew that John needed a purpose and activity in his life, so she partnered with Myrla Bulman to research and create a relevant service for younger people with dementia. Enter YouQuest – a community that promotes the health and well-being of people with young-onset dementia and their families by ensuring access to recreation therapy, counselling, and peer support. WHAT WE DO Participants enjoy a full, active day in the community with their peers, giving a day of respite for care partners to manage work, family life, and their personal health. Being seen as active and engaged members of the community challenges the stigma for people with young-onset dementia, who don’t want to be inactive, in care, or treated as elderly patients. “YouQuest is my haven” – Bruce, Participant With recreation therapists and a team of volunteers, participants set fitness goals based on their interests, strengths, and abilities. Participants co-plan social, physical, and cognitive activities in the SAIT Wellness Centre, on campus, and around the city. We enjoy the outdoors, conversation at restaurant lunches, and live music with our house band. Proactive and cost-effective, YouQuest reduces the burden on the health system by enabling otherwise healthy people to stay connected to their families. By engaging post-secondary students in practicum roles, YouQuest increases awareness about young-onset dementia and its implications for families. Combined with more research specific to the young-onset perspective, this knowledge transfer will ensure future health providers create services that better match the needs of younger families. Families now have access to a practical and engaging service that advocates for an active presence in the community, giving much-needed support to care partners. WHAT YOU CAN DO Your contribution will provide access to wellness days for individuals living with a dementia diagnosis as well as respite for their care partners.