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

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.

Keywords: Advance care planning; Care at home; Dementia; Interdisciplinary research; Neurodegenerative diseases; Personhood; Research priorities.

Fig. 1

Showing the four quadrants of Hodges’ Health Career Model (1989) that provide a unique systematic way to think about research to inform holistic care

Fig. 2

Showing the Palliative Care Continuum as one-dimensional journey from screening and diagnosis to end-of-life care. Evidence is required to inform practice in all segments (coloured)

Fig. 3

The model of dynamic involvement of palliative services based on trigger points (adapted from NHS England, End of life in long term neurological conditions: A framework for Implementation, pg.11)