End-of-life care: A qualitative study comparing the views of people with dementia and family carers

Marie Poole, Claire Bamford, Emma Mclellan, Richard P Lee, Catherine Exley, Julian C Hughes, Karen Harrison-Dening, Louise Robinson

Research output: Contribution to journalArticlepeer-review

28 Citations (Scopus)
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Abstract

Background:
In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers.

Aim:
To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care.

Design:
Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed.

Setting/participants:
Participants comprised people with early stage dementia, living at home in the north-east of England (n = 11); and current and bereaved carers (n = 25) from six services providing end-of-life care in England.

Findings:
Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making.

Conclusion:
Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.
Original languageEnglish
Pages (from-to)631-642
JournalPalliative Medicine
Volume32
Issue number3
Early online date12 Oct 2017
DOIs
Publication statusPublished - 1 Mar 2018

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