How Social Environment Shapes Pre-Death Grief Experiences in Dementia Caregiving: A Qualitative Study

Abstract

Caregivers of persons living with dementia experience significant losses as they witness the progressive cognitive decline and personality changes of their loved ones while managing substantial caregiving responsibilities. This results in pre-death grief, which is a multifaceted response to the losses experienced. Although pre-death grief is traditionally conceptualized as an intrapersonal and dyadic phenomenon, this study examines how social environments shape caregivers’ grief experiences. Through semi-structured interviews with 33 dementia caregivers in Singapore, we identified 11 distinct domains that influence grief experiences: self, persons with dementia, family, domestic workers, friends, workplaces, fellow caregivers, health and social care services, public, policy, and social–cultural contexts. Our findings reveal that pre-death grief emerges through multifaceted interactions across these domains rather than solely through individual psychological processes. Caregivers navigate personal sacrifices and other losses while experiencing validation and invalidation of the losses across different social contexts. Particularly notable is the previously unexplored role of domestic workers, who significantly influence the caregivers’ grief experiences by redistributing the caregiving burden and providing emotional sustenance. The findings supplement dominant theoretical frameworks that primarily focus on intrapersonal or dyadic processes, suggesting instead that pre-death grief in dementia caregiving is fundamentally a social process. This perspective has significant implications for developing more comprehensive support systems that address the socially embedded nature of grief rather than focusing exclusively on individual coping strategies. By understanding pre-death grief as socially situated, we can better support caregivers throughout their dementia caregiving journey.