System and policy-level barriers and facilitators for timely and accurate diagnosis of young onset dementia

Objective: The multiyear diagnostic journey for young onset dementia (YOD) is fraught with clinical and personal difficulties and poses significant uncertainty for people living with YOD and their families. Most existing research has examined the personal and/or clinical barriers to a timely diagnosis of YOD, but less evidence exists regarding system level factors. The aim of this study is to investigate health professionals' insights for a timely and accurate YOD diagnosis at the system level. 

Design: Grounded theory qualitative study. 

Setting and Participants: Semi-structured in-depth interviews with 11 health professionals working across varied healthcare settings were conducted online via videoconference. 

Measurements: Data were contrasted and compared within and between transcripts using the constant comparative method. 

Results: Seven themes emerged about barriers and facilitators for timely and accurate diagnosis of YOD: (1) stigma and awareness of YOD; (2) mismatched policy; (3) fractured health system; (4) inadequate pathways for YOD diagnostic care; (5) effective use of General Practitioners; (6) inequitable access and fragmented service navigation; (7) diverse and marginalised groups.

Conclusion: A complex web of systemic and system level barriers contributes to the delay of accurate and timely diagnosis for YOD. Diverse and marginalised groups experience greater inequitable disadvantage regarding YOD diagnostic care. There is an urgent need to focus on YOD diagnosis facilitators at the broader health system level.