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

Poole, Marie, Bamford, Claire, McLellan, Emma, Lee, Richard, Exley, Catherine, Hughes, Julian, Harrison-Dening, Karen and Robinson, Louise (2018) End-of-life care: A qualitative study comparing the views of people with dementia and family carers. Palliative Medicine, 32 (3). pp. 631-642. ISSN 0269-2163

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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.

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