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Media type:
E-Article
Title:
End-of-life care: A qualitative study comparing the views of people with dementia and family carers
Contributor:
Poole, Marie;
Bamford, Claire;
McLellan, Emma;
Lee, Richard P;
Exley, Catherine;
Hughes, Julian C;
Harrison-Dening, Karen;
Robinson, Louise
Published:
SAGE Publications, 2018
Published in:
Palliative Medicine, 32 (2018) 3, Seite 631-642
Language:
English
DOI:
10.1177/0269216317736033
ISSN:
0269-2163;
1477-030X
Origination:
Footnote:
Description:
<jats:sec><jats:title>Background:</jats:title><jats:p> 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. </jats:p></jats:sec><jats:sec><jats:title>Aim:</jats:title><jats:p> 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. </jats:p></jats:sec><jats:sec><jats:title>Design:</jats:title><jats:p> Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. </jats:p></jats:sec><jats:sec><jats:title>Setting/participants:</jats:title><jats:p> 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. </jats:p></jats:sec><jats:sec><jats:title>Findings:</jats:title><jats:p> 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. </jats:p></jats:sec><jats:sec><jats:title>Conclusion:</jats:title><jats:p> 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. </jats:p></jats:sec>