UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia

Fisher, Emily; Crawley, Sophie; Sampson, Elizabeth L; Cooper, Claudia; Jones, Rebecca; Anantapong, Kanthee; Moore, Kirsten; (2022) Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia. Dementia 10.1177/14713012211066674. (In press). Green open access

[thumbnail of 2022 Fisher et al_Practical emotional preparation for death_Dementia_mixed methods.pdf]
Preview
Text
2022 Fisher et al_Practical emotional preparation for death_Dementia_mixed methods.pdf - Published Version

Download (855kB) | Preview

Abstract

BACKGROUND: When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death. METHODS: This was a mixed methods cross-sectional study. Family carers of people with dementia (n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample (n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. RESULTS: We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers' feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer. CONCLUSIONS: While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative's death.

Type: Article
Title: Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/14713012211066674
Publisher version: https://doi.org/10.1177/14713012211066674
Language: English
Additional information: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/)
Keywords: death preparation, death preparedness, dementia, dementia carers, end of life, end of life preparation, family carers, mixed methods
UCL classification: UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/10143528
Downloads since deposit
14Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item