Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

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dc.contributor.authorFox, Siobhán
dc.contributor.authorFitzgerald, Carol
dc.contributor.authorDening, Karen Harrison
dc.contributor.authorIrving, Kate
dc.contributor.authorKernohan, W. George
dc.contributor.authorTreloar, Adrian
dc.contributor.authorOliver, David
dc.contributor.authorGuerin, Suzanne
dc.contributor.authorTimmons, Suzanne
dc.contributor.funderIrish Research Council
dc.date.accessioned2017-09-26T11:39:20Z
dc.date.available2017-09-26T11:39:20Z
dc.date.issued2017
dc.description.abstractBackground: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. Main body: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities. Conclusions: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.en
dc.description.sponsorshipIrish Research Council ('Creative Connections' grant)en
dc.description.statusPeer revieweden
dc.description.versionPublished Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.articleid9
dc.identifier.citationFox, S., FitzGerald, C., Harrison Dening, K., Irving, K., Kernohan, W. G., Treloar, A., Oliver, D., Guerin, S. and Timmons, S. (2017) 'Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research', BMC Palliative Care, 17(1), 9 (11pp). doi: 10.1186/s12904-017-0221-0en
dc.identifier.doi10.1186/s12904-017-0221-0
dc.identifier.issn1472-684X
dc.identifier.journaltitleBMC Palliative Careen
dc.identifier.urihttps://hdl.handle.net/10468/4796
dc.identifier.volume17
dc.language.isoenen
dc.publisherBiomed Central Ltden
dc.relation.urihttps://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-017-0221-0
dc.rights© 2017, the Authors. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.en
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.subjectDementiaen
dc.subjectNeurodegenerative diseasesen
dc.subjectInterdisciplinary researchen
dc.subjectResearch prioritiesen
dc.subjectAdvance care planningen
dc.subjectPersonhooden
dc.subjectCare at homeen
dc.subjectEnd of lifeen
dc.subjectDecision makingen
dc.subjectPrioritiesen
dc.subjectTimeen
dc.subjectProgressen
dc.titleBetter palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future researchen
dc.typeArticle (peer-reviewed)en
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