ArticleDementia (London, England)2022
Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia.
Article in Dementia (London, England), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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Who cites it
6 citing papers in PubMed.
- Psychometric validation and cross-cultural adaptation of the dementia knowledge assessment Scale-Thai (DKAS-Thai).BMC geriatrics · 2026Article
- Increasing number of unmanaged distressing symptoms in people living with dementia associated with family carer burden and distress following an unplanned hospital admission: A longitudinal cohort study.Palliative care and social practice · 2026Article
- Article
- Supporting Family Caregivers of Nursing Home Residents with Dementia in Their Last Week of Life: A Survey Among Bereaved Family Caregivers.Palliative medicine reports · 2025Article
- Understanding attitudes and preferences towards advance care planning in older adults: Insights from a cross-sectional study in primary care.Palliative care and social practice · 2025Article
- Navigating the Journey of Living with Young-Onset Dementia: Experiences of Spousal Caregivers.Journal of Alzheimer's disease : JAD · 2024Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundWhen 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.
methodsThis was a mixed methods cross-sectional study. Family carers of people with dementia (
resultsWe 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.
conclusionsWhile 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.
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