Davies, N;
Rait, G;
Maio, L;
Iliffe, S;
(2016)
Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study.
Palliative Medicine
, 31
(8)
pp. 726-733.
10.1177/0269216316673552.
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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.
| Type: | Article |
|---|---|
| Title: | Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1177/0269216316673552 |
| Publisher version: | http://dx.doi.org/10.1177/0269216316673552 |
| Language: | English |
| Additional information: | This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit https://creativecommons.org/licenses/by-nc/4.0/deed.en |
| Keywords: | Dementia, end-of-life care, palliative care, caregiver, quality in health care |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health |
| URI: | https://discovery.ucl.ac.uk/id/eprint/1522446 |
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