Service Providers’ Perspectives on Community Support for Young Onset Dementia

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.