The trajectory of family caregiving for older adults with dementia: difficulties and challenges

Abstract Introduction As the main source of informal care in China, family members bear a tremendous caregiving burden, particularly in relation to older people with dementia (PwDs). However, the continuous caregiving trajectory of family caregivers was unclear. Objectives To investigate the trajectory of PwDs’ family caregivers’ struggles from home care to institutional care, and identify the common tipping points leading to institutional care from their perspectives. Methods An ethnographic study was conducted in a long-term care institution in Chengdu, China, from 2019 to 2020. Face-to-face, semi-structured interviews were carried out with 13 family members (i.e. 5 spouses and 8 adult children) of older PwDs during family caregivers’ visits. The interviews were recorded and transcribed, after which the transcripts were analysed using thematic analysis. Results The family caregivers’ experiences before and after the PwDs’ institutionalization fell into two distinctive parts, and three subthemes about their caregiving experiences in each period were identified: the mental stress, the physical care burden, and the social and emotional pressure connected to home-based care; the moral pressure and emotional torment, the financial burden, and new worries after institutionalization. The tipping points in between the two stages were major changes or incidents related to the PwDs’ status. Variations in the spouse and older children’s care experiences also emerged. Conclusion Our study provides a nuanced analysis of the trajectory of family caregiving for PwDs. The plight of family caregivers at all stages should be recognized and supported with adequate medical and social resources, with a further consideration of the caregivers’ relationships with the older PwDs.