Changing care work and support needs across the home-based dementia care trajectory: a qualitative study of family caregivers in China

Abstract Background In China, most people living with dementia receive care at home from family members. Dementia caregiving changes over time, yet less is known about how caregivers’ support needs are reconfigured within ongoing home-based care as family responsibilities and interactions with health and care services change. This study explored how caregivers retrospectively described changes in caregiving responsibilities and associated support needs across the home-based dementia care trajectory. Methods This qualitative descriptive study involved 38 primary family caregivers in Guangzhou, China, who participated in face-to-face semi-structured interviews between February and December 2024. Participants were recruited using purposive maximum variation sampling, and data were analysed using the framework method. The identified phases were treated as analytically reconstructed and overlapping rather than fixed or linear. Results Support needs did not simply increase over time but were reconfigured as family care work changed. Before formal help-seeking, caregivers had to interpret ambiguous changes, judge whether they warranted concern, and decide how to seek help. They therefore needed accessible risk-recognition information, clear entry points to assessment, and low-barrier, non-stigmatising routes to formal support. While engaging with services, caregiving shifted towards navigating pathways, coordinating across settings, maintaining continuity, and negotiating family decisions. Caregivers consequently needed clearer care pathways, continuity and handover support, service coordination, and family decision support. While sustaining care at home, the central challenge became maintaining everyday manageability amid repetitive tasks, symptom fluctuation, emotional strain, and financial pressure. Caregivers needed practical relief, actionable symptom-management guidance, emotional support, financial protection, and services compatible with family routines. Conclusions Caregivers’ support needs were shaped not only by dementia-related changes, but also by the reorganisation of family care work and encounters with fragmented services. These findings suggest that support may be more responsive when aligned with transitions in caregiving responsibilities and service engagement rather than with dementia severity alone.