Navigating young-onset dementia caregiving: a qualitative study of unmet needs, support, and resilience

Aim To explore the unmet needs, support experiences, and resilience strategies of informal caregivers of persons with young-onset dementia (YOD) in Singapore. Background YOD is defined by symptom onset before 65 years of age and presents caregiving challenges distinct from later-onset dementia. Despite these distinct challenges, evidence on the experiences and support needs of young-onset dementia caregivers in Singapore remains limited. Design: A descriptive qualitative study. Methods Semi-structured interviews were conducted with 11 informal caregivers of persons with YOD recruited through a neurocognitive service in Singapore between October and December 2024. Data were analysed using reflexive thematic analysis. Results Caregivers described YOD caregiving as emotionally and physically demanding, socially isolating, and financially disruptive. Their experiences were shaped by limited access to age-appropriate services, poor visibility of resources, and stigma surrounding dementia in younger persons. While caregivers drew on resilience strategies including self-care, meaning-making, humour, faith, and support from family, peers, and community networks, these efforts were insufficient. Overall, the findings highlight a mismatch between the complex realities of YOD caregiving and the services currently available to support caregivers. Conclusion Although caregivers demonstrated resilience and adaptive coping, YOD caregiving in Singapore remained constrained by limited access to visible, tailored, and age-appropriate support. More coordinated support is needed to address caregivers’ life-stage, psychosocial, and practical needs. Impact: This study extends understanding of YOD caregiving in an underexamined Asian context and highlights the need for healthcare and community services that better address caregivers’ needs. The findings can inform the development of more responsive models of caregiver support and future intervention research. Patient of Public Contribution: This study did not include patient or public involvement in its design, conduct, or reporting.