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Young onset dementias (YOD) – typically defined by symptom onset before age 65 – are frequently overlooked in medical and community settings. Persons with YOD and their spouses face logistical and emotional challenges on their journey to a diagnosis (e.g. uncertainty about symptoms, lack of medical knowledge, emotional distress). An in-depth understanding of couples’ experiences before and immediately following a YOD diagnosis is warranted to inform early psychosocial services for couples.

We utilized dyadic qualitative semi-structured interviews (N = 23) to better understand the nuances of couples’ pre-diagnostic and diagnostic experiences with YOD. We used a hybrid of deductive and inductive analytic strategies to identify couple-level themes.

Fifteen couple-level themes were extracted within four domains: (1) early indicators of symptoms, (2) obtaining a diagnosis, (3 …