Abstract

People living with young onset dementia face significant barriers to diagnosis, resulting in delays, misdiagnoses, and treatment gaps. We examined the process of accessing and delivering a diagnosis of young onset dementia using the candidacy framework as a conceptual lens. Semi-structured interviews were conducted with six people living with dementia, 14 family members, and 16 providers in a western Canadian city. Participants' accounts revealed the diagnosis of young onset dementia as a negotiated process involving patients, family members, and health professionals. Assumptions about age and dementia affected how participants interpreted their symptoms, how they presented to services, and how they, in turn, were perceived by providers. At the organizational level, age-restrictions, fragmentation, and unclear referral pathways further complicated the diagnostic process. Our findings lend support to the growing call for specialist young onset dementia care and point toward several recommendations to develop more age-inclusive diagnostic services.

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