Document Type
Dissertation
Degree Name
Doctor of Philosophy (PhD)
Department
Kinesiology and Physical Education
Faculty/School
Faculty of Science
First Advisor
Dr. Pam Bryden
Advisor Role
Co-supervisor
Second Advisor
Dr. Paula Fletcher
Advisor Role
Co-supervisor
Abstract
Persons living with young-onset dementia and their caregivers have unique needs requiring tailored support; however, a lack of tailored interventions exist, leaving caregivers feeling unsupported. Physical activity and/or social support are two interventions with the potential to enhance caregivers’ health. Unfortunately, a paucity of research has focused on these types of support relative to young-onset dementia caregivers. As such, this dissertation consisted of four studies broadly aimed at understanding the support needs and preferences of caregivers of persons living with young-onset dementia across Canada. More specifically, the primary objectives were to: (1) understand the needs of young-onset dementia caregivers in terms of community-based interventions; (2) gain an understanding of the relationship between physical activity and the effects of providing young-onset dementia care; and (3) understand the relationship between social support and the effects of being a young-onset dementia caregiver. All four studies were guided by the social ecological model of health. Together the findings indicated caregivers of persons living with young-onset dementia were underrepresented in the literature regarding community-based interventions which may contribute to the lack of tailored interventions available. Further, caregivers identified a preference for young-onset dementia specific interventions, tailored to the caregiver-care recipient relationship and not interventions where they participated alongside their care recipients living with young-onset dementia. This highlighted a discrepancy between the preferences of caregivers and the current interventions available, as many existing interventions identified were dyadic in nature. Likewise, findings illustrated the many barriers caregivers and service providers experienced relative to tailored intervention access, delivery and/or effectiveness and the broader system level factors fueling these challenges. Thus, to help conceptualize what has been previously identified in the literature (i.e., Study #1), relative to the interventions that exist for families (i.e., Study #2) and the barriers, facilitators and preferences for community-based interventions identified by caregivers (i.e., Study #3) and service providers (i.e., Study #4), a conceptual model was developed (Figure 5) and recommendations were provided relative to the individual levels of the social ecological model. The results of this dissertation, in combination with previous research can inform the development of tailored interventions and help enhance the lives of caregivers of people living with young-onset dementia across Canada.
Recommended Citation
ONeil, Hailey, "Closing the Gap: Understanding the Needs of Young-onset Dementia Caregivers in Terms of Community-Based Interventions" (2026). Theses and Dissertations (Comprehensive). 2950.
https://scholars.wlu.ca/etd/2950
Convocation Year
2026
Convocation Season
Fall
Included in
Community Health and Preventive Medicine Commons, Disability Studies Commons, Health Services Research Commons, Other Kinesiology Commons, Population Health Commons