Diagnostic experience reported by caregivers of patients with frontotemporal degeneration

To describe the experience of obtaining a diagnosis of frontotemporal degeneration (FTD) for patients and caregivers.

Data came from a 2017 web-based survey of 698 FTD caregivers. Clinical characteristics and diagnostic experiences were described according to the phenotype of the patient with FTD (behavioral variant FTD, primary progressive aphasia, FTD with motor neuron disease, or progressive supranuclear palsy/corticobasal syndrome). Unadjusted and adjusted logistic regression analyses determined associations between patient with FTD and caregiver characteristics and (1) receiving a diagnosis >1 year after initial symptoms and (2) first receiving a non-FTD diagnosis.

Mean age was 66 ± 9 years for patients with FTD and 61 ± 10 years for FTD caregivers. Forty-four percent of patients took more than 1 year; 65% saw 3 or more doctors; and 84% required 3 or more visits to establish an FTD diagnosis. Initial diagnosis was depression or other psychiatric condition in 21% of patients. Twenty-eight percent of caregivers and 26% of patients lost ≥11 work days seeking diagnosis. The majority of diagnoses (66%) were made by neurologists. Patient and caregiver age, having a spouse caregiver, rural residency, and mood changes as first symptom were associated with a longer time to receive FTD diagnosis. Caregivers frequently rated diagnosing doctors as good/excellent in knowledge of FTD but as inadequate/poor on knowledge of available community resources.

This study, which quantifies the patient with FTD and caregiver burden before receiving the FTD diagnosis, can inform clinical practice, interventions to address diagnostic delays, and programs and services to support patients/caregivers during and following the diagnosis.