Better Palliative Care for people with a Dementia: Summary of InterdisciplinaryWorkshop Highlighting Current Gaps and Recommendations for Future Research

Siobhan T Fox, Carol FitzGerald, Karen Harrison Dening, Kate Irving, W George Kernohan, Adrian Treloar, David Oliver, Suzanne Guerin, Suzanne Timmons

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Background: Dementia is the most common neurological disorder worldwide and is alife-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 tothose of cancer patients. However, many people with advanced dementia are notroutinely being assessed to determine their palliative care needs, and it is not clearwhy 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 thisworkshop was to discuss the evidence base for palliative care for people withdementia, to identify 'gaps' for clinical research, and to make recommendations forinterdisciplinary research practice. To lead the discussion throughout the day amultidisciplinary panel of expert speakers were brought together, including bothresearchers and clinicians from across Ireland and the UK. Targeted invitations weresent to attendees ensuring all key stakeholders were present to contribute todiscussions. In total, 49 experts representing 17 different academic and practicesettings, attended.Key topics for discussion were pre-selected based on previously identified researchpriorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topicsincluded: i. Advance Care Planning for people with Dementia; ii. Personhood in End-oflifeDementia care; iii. Topics in the care of advanced dementia at home. These topicswere used as a starting point, and the ethos of the workshop was that the attendeescould 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 thepotential to be improved; palliative care frameworks may have much to offer in thisendeavour. However, a solid evidence base is required to translate palliative care intopractice in the context of dementia. This paper presents suggested research prioritiesas a starting point to build this evidence base. An interdisciplinary approach toresearch and priority setting is essential to develop actionable knowledge in this area.
Original languageEnglish
JournalBMC Palliative Care
Issue number9
Publication statusPublished (in print/issue) - 14 Jul 2017


  • Dementia – Neurodegenerative diseases – Interdisciplinary research – Research priorities – Advance care planning – Personhood – Care at home


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