The experience of bereavement on family caregivers of people with dementia in China

Dementia (London). 2021 Oct;20(7):2235-2247. doi: 10.1177/1471301220988237. Epub 2021 Mar 5.

Abstract

Background and objectives: Despite many studies on 'life after care' for family caregivers with dementia in Western societies, little is known about the bereavement experiences of family caregivers in China. The aim of this study was to explore the experience of bereavement on family members of people with dementia in China. It also hopes to inform end-of-life care within communities, providing a theoretical basis for improving the quality of life of bereaved family caregivers.

Methods: Interpretative phenomenological analysis approach was adapted for this study. Purposive sampling was used to recruit former family caregivers of people with dementia. Semi-structured in-depth interviews with 12 bereaved family caregivers were collected. Thematic analysis was used for data analysis.

Findings: Five themes were identified: recalling the past life, lack of support, uncertainty of the future, social withdrawal and acceptance and release.

Conclusion: The experiences of bereavement on family members of people with dementia in China are socially and culturally complex. This article recommends that bereavement should be supported throughout the palliative process of community services and healthcare services. Providing all-round support and education on death and dying can help the family caregivers to pass through grief and help them to maintain their normal life.

Keywords: China; bereavement; family caregivers; people with dementia.

MeSH terms

  • Bereavement*
  • Caregivers
  • China
  • Dementia*
  • Family
  • Grief
  • Humans
  • Quality of Life