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.author Fox, Siobhán
dc.contributor.author Fitzgerald, Carol
dc.contributor.author Dening, Karen Harrison
dc.contributor.author Irving, Kate
dc.contributor.author Kernohan, W. George
dc.contributor.author Treloar, Adrian
dc.contributor.author Oliver, David
dc.contributor.author Guerin, Suzanne
dc.contributor.author Timmons, Suzanne
dc.date.accessioned 2017-09-26T11:39:20Z
dc.date.available 2017-09-26T11:39:20Z
dc.date.issued 2017
dc.identifier.citation Fox, 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/s12904-017-0221-0 en
dc.identifier.volume 17
dc.identifier.issn 1472-684X
dc.identifier.uri http://hdl.handle.net/10468/4796
dc.identifier.doi 10.1186/s12904-017-0221-0
dc.description.abstract Background: 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.sponsorship Irish Research Council ('Creative Connections' grant) en
dc.format.mimetype application/pdf en
dc.language.iso en en
dc.publisher Biomed Central Ltd en
dc.relation.uri https://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.uri https://creativecommons.org/licenses/by/4.0/
dc.subject Dementia en
dc.subject Neurodegenerative diseases en
dc.subject Interdisciplinary research en
dc.subject Research priorities en
dc.subject Advance care planning en
dc.subject Personhood en
dc.subject Care at home en
dc.subject End of life en
dc.subject Decision making en
dc.subject Priorities en
dc.subject Time en
dc.subject Progress en
dc.title Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research en
dc.type Article (peer-reviewed) en
dc.internal.authorcontactother Siobhan Fox, Clinical Gerontology & Rehabilitation, University College Cork, Cork, Ireland. +353-21-490-3000 Email: s.fox@ucc.ie en
dc.internal.availability Full text available en
dc.description.version Published Version en
dc.internal.rssid 413448580
dc.internal.rssid 421647695
dc.internal.wokid WOS:000405808700001
dc.contributor.funder Irish Research Council
dc.description.status Peer reviewed en
dc.identifier.journaltitle BMC Palliative Care en
dc.internal.IRISemailaddress s.fox@ucc.ie en
dc.identifier.articleid 9


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© 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. Except where otherwise noted, this item's license is described as © 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.
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