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  • Observational Study
    In person & Online

    Service Providers’ Perspectives on Community Support for Young Onset Dementia

    What is this Study about?

    YOD is dementia diagnosed before the age of 65 and consists of approximately 2-8% of all Canadian dementia cases (n = 28,000) (Alzheimer’s Society of Canada, 2023), whereas late onset dementia is dementia diagnosed after the age of 65 and occurs much more frequently than young onset dementia (n = 597,000) (Alzheimer Society of Canada, 2023). Research has found caregivers for persons living with YOD experience higher levels of caregiver related stress, feelings of social isolation, and psychological and financial hardships. Further, caregivers for persons living with young onset dementia are more likely to be negatively affected by stigma associated with dementia in comparison to caregivers of older adults with dementia (Blake & Hopper, 2022; Chiari et al., 2022; Climans et al., 2023). A diagnosis of young onset dementia is atypical within one’s life trajectory, with many individuals being employed full-time at the time of diagnosis. As such young onset dementia caregivers often face unique challenges such as balancing the demands of their caregiving roles with employment, becoming the sole providers financially (Flynn & Mulchay, 2015), and potentially having young children still at home (Lockridge & Simpson, 2013; Svanberg et al., 2011). Consequently, it is imperative for resources to be designed to directly meet the needs of young onset dementia caregivers. Within Canada, most community-based interventions are designed for older adults with dementia and their families, with limited programs designed specifically for persons living with young onset dementia and their caregivers (Alzheimer Society Canada, 2018; Giebel et al., 2020). As a result, persons living with YOD and caregivers/care partners often feel unsupported. Therefore, the purpose of this qualitative study will be to understand the experiences and needs of service providers when implementing services for individuals with young onset dementia and their families. Findings will be used to inform the development of more responsive and appropriate community-based supports. 

    Eligibility Criteria

    You are eligible to participate if you:

    - 18 years or older

    - Are involved within (i.e.,designing, implementing, or evaluating) programs for persons living with dementia and/or their family caregivers

    - Understand the elements (e.g., activity type, target population) that comprise program(s) designed for persons living with dementia and/or their family caregivers

    -Live and work within Canada 

    Recruitment End Date

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  • Observational Study
    Online

    CAN-PROTECT

    What is this Study about?

    CAN-PROTECT is a Canada-wide online study recruiting participants and caregivers of persons with dementia to explore how lifestyle, background, and caretaking factors affect our health, quality of life, cognition, behaviour, and function as we age. CAN-PROTECT data will be analyzed and jointly published by the University of Calgary in partnership with the University of Exeter.

    Eligibility Criteria

    - Age 18 years or older

    - Reside in Canada

    - Have access to a computer/touchscreen device

    - Can provide informed consent

    - Do not have a diagnosis of dementia

    - Additionally, we are enrolling participants who have previously or currently care for persons with dementia for caregiver-specific assessments

    - Ability to speak English

    Recruitment End Date

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