What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders

Background People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention. Methods The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups. Results Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death. Conclusions This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia. Electronic supplementary material The online version of this article (10.1186/s12877-018-0983-0) contains supplementary material, which is available to authorized users.

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PID https://www.doi.org/10.1186/s12877-018-0983-0
PID pmc:PMC6280541
PID pmid:30514221
URL http://nrl.northumbria.ac.uk/37536/
URL https://eprint.ncl.ac.uk/252950
URL http://link.springer.com/content/pdf/10.1186/s12877-018-0983-0.pdf
URL http://nrl.northumbria.ac.uk/id/eprint/37536/1/Bamford%20et%20al%20-%20What%20enables%20good%20end%20of%20life%20care%20for%20people%20with%20dementia%20OA.pdf
URL http://link.springer.com/article/10.1186/s12877-018-0983-0/fulltext.html
URL http://europepmc.org/articles/PMC6280541
URL https://academic.microsoft.com/#/detail/2901699852
URL https://link.springer.com/article/10.1186%2Fs12877-018-0983-0
URL https://eprint.ncl.ac.uk/file_store/production/252950/E322EB75-0911-43DA-902F-55301E8061A7.pdf
URL http://dx.doi.org/10.1186/s12877-018-0983-0
URL https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0983-0
URL https://bmcgeriatr.biomedcentral.com/track/pdf/10.1186/s12877-018-0983-0
URL https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280541/
URL https://doaj.org/article/096363cb46b2468e8e589ed9fcc31c80
URL http://link.springer.com/article/10.1186/s12877-018-0983-0
URL https://doaj.org/toc/1471-2318
URL https://pubmed.ncbi.nlm.nih.gov/30514221/
URL https://research-information.bris.ac.uk/en/publications/what-enables-good-end-of-life-care-for-people-with-dementia-a-mul
URL https://dx.doi.org/10.1186/s12877-018-0983-0
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Author Claire Bamford, 0000-0003-2885-801X
Author Richard Lee
Author Emma McLellan
Author Marie Poole
Author Karen Harrison-Dening
Author Julian Hughes, 0000-0002-9863-0478
Author Louise Robinson
Author Catherine Exley
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Collected From Europe PubMed Central; PubMed Central; ORCID; Datacite; UnpayWall; DOAJ-Articles; Crossref; Microsoft Academic Graph; CORE (RIOXX-UK Aggregator)
Hosted By Europe PubMed Central; Northumbria Research Link; BMC Geriatrics
Publication Date 2018-12-04
Publisher Springer Science and Business Media LLC
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Country United Kingdom
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Source https://science-innovation-policy.openaire.eu/search/publication?articleId=dedup_wf_001::8f67a518ab314cab5a37f877a9c97064
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Last Updated 27 December 2020, 02:59 (CET)
Created 27 December 2020, 02:59 (CET)