Guilt in dementia caregiving before and after the death of a person with dementia: Perspectives of current and former female family caregivers

The study aims to explore how guilt in dementia caregiving is perceived and expressed by current and former female family caregivers of people with dementia in the sociocultural context of Vietnam. In this secondary, supplementary analysis, reflexive thematic analysis was conducted on a subsample of 20 female caregivers, including 10 current, active caregivers and 10 former caregivers of deceased people with dementia, drawn from a larger study on good end-of-life care in dementia among Vietnamese family caregivers. The results show that both groups of female caregivers experienced and manifested guilt in their thought processing, expressed emotions related to specific conditions or events, and used coping strategies. Two distinct patterns of themes emerged between the two groups: guilt was not explicitly mentioned or demonstrated in the discourses of current, active caregivers, yet it was a dominant and significant grand theme among former caregivers. Most current female caregivers believed that they have done the best they could, while former caregivers overwhelmingly self-assessed their past caregiving as poor and insufficient. They associated their failure to meet their caregiving and dying goals with the bad condition and low quality of life in the end-of-life stage of people with dementia, as well as the unexpected, terrible death of their relatives. The study results provide evidence for the development of psycho-educational interventions for family caregivers, particularly female caregivers, in both end-of-life care and post-death grief and bereavement, to alleviate guilt and improve their adaptation and mental health outcomes.