A non-profit, YouQuest is Calgary’s first wellness community created to improve quality of life for active people living with young onset dementia and their families. Launching at the Trico Centre for Family Wellness, YouQuest is both appealing and relevant for social engagement with peers and an opportunity for shared family recreation.
Days at YouQuest are co-planned with participants and mean the difference between active enjoyment and living a sedentary life of isolation. Imagine days filled with choices: learning a new sport, socializing with friends, or planning a neighbourhood adventure. Deciding if the day involves the fitness centre, enjoying the arts, or an afternoon skate – we provide adaptive Recreation Therapy support as needed. Care partners and family members can join in or enjoy respite time to pursue their own interests and responsibilities.
Established in 2017, we are one part caregiver experience, and one part motivated social entrepreneurs, with a strong infusion of dedicated board members, advisors and volunteers committed to help this hidden and vulnerable population. To better understand what we call ‘U65’ dementia, some important facts are:
•Dementia is not a normal part of aging; it is a group of symptoms, resulting from many types of brain disorders
•The term ‘young onset’ differentiates this group from the ‘early stage’ of dementia symptoms in seniors
•Alzheimer’s disease is just one cause of dementia, and the most common regardless of age; however, young onset often takes a different form
The 2018 YouQuest pilot for 10 participants will be formally evaluated by a post-secondary research team to help improve the knowledge base and service delivery for this demographic. The YouQuest model will be scaled up to 20 participants/location and replicated to other recreation centres to meet demand. After addressing the need for U65 dementia support, this self-determined recreation format will also have appeal for people with health issues such as mild cognitive impairment and traumatic brain injury.
YouQuest is living with dignity, respect and grace. The dignity of freedom to move and make decisions. The respect to be purposeful and visible in the community. The grace of living well according to person interests.
Who Will it Benefit?
Our value proposition addresses the service gap for over 1,300 individuals (40-64 years) living with young onset dementia and their families in the Calgary Health Zone (Alberta Health: 2016). This translates to 10% of the dementia population, and a 43% increase over Alberta statistics reported in 2012.
Existing daytime services, often at capacity, are all designed for seniors in a long-term care setting, whereas younger people with dementia still need and want to be active with their peers in the community.
Younger people with dementia do not want to fall into the health system prematurely; they do need day-to-day help for unique needs – as do their families – to find a positive quality of life after diagnosis.
Care partners cannot shoulder all the roles alone; they need peace of mind to manage family life and maintain their health and employment. Children need life to be normal … growing up is hard enough.
But it’s complicated … because when dementia happens in younger families, the stark realities are:
• Misdiagnosis or delayed diagnosis often restricts initial access to support
• Financial instability from loss of employment, health and pension benefits
• Ineligibility for senior benefits further limits access to health/support resources
• Isolation and inactivity due to loss of professional, social and community networks
• Care partner responsibility is a much longer duration due to earlier age of onset
• All family roles are disrupted from normal stages of life, creating risks of physical/mental/family health issues
YouQuest improves quality of life while reducing acute and long-term health care spending by keeping active people with U65 dementia engaged in community life. Aligned with 2017 Alberta Dementia Strategy & Action Plan, YouQuest provides higher value/lower cost delivery by giving people a role in managing their health through timely, age-appropriate services and family-oriented support in the community.
As an organization, YouQuest creates jobs, engages community volunteers, and uses existing infrastructure to deliver this unique service. We promote U65 dementia-specific research, provide teaching opportunities and invite collaboration with health providers. With the University of Calgary’s Hotchkiss Brain Institute reporting 92 new cases of U65 dementia per year, it is vital to recognize the cascading needs of younger families and help destigmatize dementia.