What do relatives value most in end-of-life care for people with dementia?

Sascha Bolt*, Jenny van der Steen, Jos Schols, Sandra Zwakhalen, Judith Meijers

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

11 Citations (Web of Science)

Abstract

Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.

Original languageEnglish
Pages (from-to)432-442
Number of pages10
JournalInternational Journal of Palliative Nursing
Volume25
Issue number9
DOIs
Publication statusPublished - Sep 2019

Keywords

  • BARRIERS
  • DEATH
  • Dementia
  • End-of-life care
  • Family caregiver
  • Home care
  • INFORMAL CAREGIVERS
  • INSTITUTIONAL CARE
  • LIFE
  • NEEDS
  • NURSING-HOME RESIDENTS
  • Nursing home
  • OLDER-PEOPLE
  • PALLIATIVE CARE
  • QUALITATIVE RESEARCH
  • DECISIONS

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