Determinants of Time to Diagnosis in Young-Onset Dementia

Timely diagnosis of young-onset dementia (YOD) is critical. This study aimed to identify factors that increased time to diagnosis at each stage of the diagnostic pathway. Participants were patients diagnosed with YOD (n = 40) and their care partners (n = 39). Information was obtained from questionnaires, and review of medical records. Mean time from symptom onset to YOD diagnosis was 3.6 ± 2 years. Suspicion of depression/anxiety at presentation was associated with significantly increased time from presentation to specialist referral. Neurologist-diagnosed YOD was the fastest route to a diagnosis, whereas diagnoses made by other specialists significantly increased the time from first specialist visit to diagnosis. By investigating multiple stages of the diagnostic pathway, we identified two factors that increased time to diagnosis: suspicion of depression/anxiety at presentation delayed specialist referral from primary care, and diagnosis by a specialist other than a neurologist delayed diagnosis of YOD.