Research

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

Corresponding author:Sascha Bolt

PhD candidate, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands

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Jenny van der Steen

Associate Professor, Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands, Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands

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Jos Schols

Professor, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands

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Sandra Zwakhalen

Professor, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands

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Judith Meijers

Assistant Professor, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands, Zuyderland Care, Zuyderland Medical Center, Sittard-Geleen, the Netherlands

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Published Online:4 Oct 2019https://doi.org/10.12968/ijpn.2019.25.9.432

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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.

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International Journal of Palliative Nursing

2 September 2019Volume 25Issue 9

ISSN (print): 1357-6321
ISSN (online): 2052-286X

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Published online 4 October 2019

Published in print 2 September 2019

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