Long-term care utilization and caregiver burden in young-onset dementia: evidence from a National Dementia Registry in Taiwan.

INTRODUCTION: Young-onset dementia (YOD) presents distinct clinical and social challenges compared with late-onset dementia (LOD), yet evidence regarding long-term care (LTC) utilization and caregiver burden in YOD populations remains limited. This study compared caregiver burden and LTC use between YOD and LOD and examined factors associated with these outcomes. METHODS: Using data from Taiwan's National Dementia Registry, baseline characteristics and caregiver burden were assessed at enrollment, and LTC utilization was evaluated at the first annual follow-up. Group comparisons were conducted, and multivariable regression identified factors associated with caregiver burden and LTC use in YOD. RESULTS: A total of 1816 dementia-caregiver dyads were included, comprising 167 individuals with YOD and 1649 with LOD. Caregivers of individuals with YOD reported significantly higher burden than those caring for individuals with LOD. Among individuals with YOD, greater functional impairment and overall neuropsychiatric symptom severity were associated with higher caregiver burden, with anxiety emerging as the significant symptom-specific factor. Despite this increased burden, LTC service utilization was lower in YOD than in LOD (17.4% vs 26.1%). Within the YOD group, non-coresidence with family caregivers and greater agitation severity were associated with a higher likelihood of LTC service use. CONCLUSION: Individuals with YOD had higher caregiver burden yet lower LTC utilization compared with LOD. This discrepancy suggests potential unmet needs and highlights the importance of flexible, age-appropriate LTC strategies for YOD populations.