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. 2017 Sep;31(8):726-733.
doi: 10.1177/0269216316673552. Epub 2016 Oct 26.

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study

Nathan Davies  1 , Greta Rait  1 , Laura Maio  1 , Steve Iliffe  1
Affiliations

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study

Nathan Davies et al. Palliat Med. 2017 Sep.

Abstract

Background: People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.

Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.

Design: Qualitative study using in-depth interviews and analysed using thematic analysis.

Setting/participants: Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.

Results: Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.

Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Keywords: Dementia; caregiver; end-of-life care; palliative care; quality in health care.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship and/or publication of this article: The views expressed are those of the authors and not necessarily those of the European Commission.

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