we serve these populations

    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 participation in a facilitated wellness community.

    Tough to diagnose, degenerative and incurable, young-onset dementia destroys the dreams and aspirations of men and women in the prime of their lives. Careers abruptly end. Income dries up. People become isolated. Loved ones and friends become care partners as families face a life-changing crisis without a safety net. There are over 1,400 people living in the Calgary area with this debilitating and life stealing disease.


    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, feeling more and more isolated. 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 day programs and found that most were designed for 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. YouQuest was born – a wellness 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 resources.

    Together with community partners, YouQuest is closing this service gap with its active, inviting and healthy community for younger people with dementia. 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. Care partners are thankful for reliable support not only for their loved one but with each other, and have built new relationships through their shared experiences. Here’s what some of our participants are saying about our service.

    “YouQuest is my haven” – Bruce, Participant

    “YouQuest gives my husband purpose and normalcy; it’s the ultimate guilt-free day for me.” – Daina, Care Partner

    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. Proactive and cost-effective, YouQuest reduces the burden on the health care 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.

    YouQuest is a practical and engaging service that advocates for active participation in a facilitated wellness community, giving much-needed support to care partners.

    With support from specialized recreation therapists and a team of volunteers, participants are encouraged to choose activities and set fitness goals based on their individual interests, strengths, and abilities.  Our team challenges participants to co-plan a variety of fun social, physical, and cognitive activities in and around the city. They share feedback about their personal needs and preferences, which provides the team with insights about their cognitive challenges and abilities. The group enjoys the outdoors, sharing conversation over a restaurant lunch, and live music with our volunteer house band and special guests. Participants tell us one of the best things about YouQuest is the friendships developed with others.

    With your support, YouQuest will expand our services from two to three days per week, to meet the service demand from current waitlisted and new families. Your contributions provide a lifeline for these younger families living with dementia, who are diminished by job loss and changing family dynamics.


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    Myrla Bulman & Cindy McCaffery