Barriers to Clinical Care in Frontotemporal Dementia and Related Disorders: A Cross-Sectional Survey of Patients and Caregivers’ Journey in the Canadian Healthcare System

Abstract

Background: Frontotemporal dementia (FTD) and related disorders are major causes of young-onset dementia (YOD), yet caregivers often face delayed diagnosis and high distress. Data on the Canadian caregiving experience in FTD remain scarce. This study aimed to describe caregivers’ profiles and experiences navigating diagnosis and care and to identify factors associated with diagnostic delay and caregiver burden.

Methods: We conducted an online survey (June 2023-May 2024) of adults providing care to individuals with FTD. The survey captured sociodemographic characteristics, diagnostic journey, healthcare access and caregiver burden (Zarit Burden Interview, ZBI). Neuropsychiatric symptoms (NPS) were assessed using the Neuropsychiatric Inventory. Descriptive and multivariable analyses examined factors associated with delayed diagnosis and burden.

Results: Ninety-seven caregivers participated (82.5% women; mean age 61.4 ± 13.1 years). Care recipients (58.8% men; mean age 72.9 ± 9.7 years) most commonly had behavioural-variant FTD (57.7%). Mean time to diagnosis was 3.1 ± 4.5 years and was longer for YOD, those without family history and those initially misdiagnosed. Nearly half were initially misdiagnosed as psychiatric disorders or Alzheimer. Women caregivers reported significantly longer diagnostic delays (+20 months, p = 0.005). Most caregivers reported substantial burden (mean ZBI = 23.1 ± 8.3) and severe distress related to NPS, especially disinhibition and irritability, which independently predicted higher burden.

Conclusion: Canadian FTD caregivers face prolonged diagnostic journeys, high neuropsychiatric-related distress and substantial unmet needs. Findings highlight gaps in awareness, access to specialized care and systematic assessment of caregiver burden, underscoring urgent priorities for improving diagnostic pathways and support services.