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

Research output: Contribution to journalArticleScientificpeer-review


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 pages11
JournalInternational journal of palliative nursing
Issue number9
Publication statusPublished - 2 Sept 2019
Externally publishedYes


  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude to Health
  • Caregivers
  • Decision Making, Shared
  • Dementia/nursing
  • Family
  • Female
  • Home Care Services
  • Humans
  • Male
  • Middle Aged
  • Nursing Homes
  • Patient-Centered Care
  • Personhood
  • Proxy
  • Qualitative Research
  • Terminal Care


Dive into the research topics of 'What do relatives value most in end-of-life care for people with dementia?'. Together they form a unique fingerprint.

Cite this