Conceptualizing access to community-based supports from the perspectives of people living with young onset dementia, family members and providers.

Abstract

People living with young onset dementia and their families have significant support needs, but experience difficulties accessing services. This study explored the process of accessing community-based services drawing on semi-structured interviews with people living with dementia, family members and providers in Winnipeg, Canada. Data analysis involved a combination of inductive coding and theoretical analysis using the candidacy framework as a conceptual lens. Forced to navigate services that do not recognize people with young onset dementia as a user group, participants experienced ongoing barriers that generated continuous work and stress for families. Access was constrained by information resources geared towards older adults and restrictive eligibility criteria that constructed people with young onset dementia as "not impaired enough" or "too impaired". At the organizational level, fragmentation and underrepresentation of young onset dementia diminished access. Our findings underscore the need for continuous, coordinated supports alongside broader representation of young onset dementia within research, policy, and practice. We conclude with a discussion of how the candidacy theory could be extended to account for the social and political status of user groups.