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.
Bibliographical noteReference text: 1. National Institute for Health and Care Excellence: Dementia: supporting people with
dementia and their carers in health and social care [CG42]. In. NICE; November 2006 [Last
updated: April 2014].
2. Office for National Statistics: Deaths registered in England and Wales 482 (Series DR): 2015. In.;
3. World Health Organisation: Dementia fact sheet. In.: WHO; April 2016.
4. Pierce M, Cahill S, O’Shea E: Prevalence and Projections of Dementia in Ireland, 2011–2046.
Dublin, Ireland: Trinity College Dublin 2014.
5. Langa KM, Larson EB, Crimmins EM, et al.: A comparison of the prevalence of dementia in
the united states in 2000 and 2012. JAMA Internal Medicine 2017, 177(1):51-58.
6. Abernethy AP, Hanson LC, Main DS, Kutner JS: Palliative care clinical research networks, a
requirement for evidence-based palliative care: time for coordinated action. Journal of
palliative medicine 2007, 10(4):845-850.
7. Higginson IJ: End-of-life care: lessons from other nations. Journal of Palliative Medicine
2005, 8(supplement 1):s-161-s-173.
8. Bayer A: Death with dementia: the need for better care. Age and Ageing 2006, 35:101-102.
9. Hughes JC, Robinson L, Volicer L: Specialist palliative care in dementia. BMJ 2005,
10. WHO definition of palliative care [http://www.who.int/cancer/palliative/definition/en/ ]
11. Dept of Health and Children: Report of the National Advisory Committee on Palliative Care.
. In. Dublin, Ireland; 2001.
12. Boersma I, Miyasaki J, Kutner J, Kluger B: Palliative care and neurology Time for a paradigm
shift. Neurology 2014, 83:561-567.
13. Borasio GD: The role of palliative care in patients with neurological diseases. . Nature
reviews Neurology 2013, 9:292-295.
14. Oliver DJ, Borasio G, Caraceni A, Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R: A
consensus review on the development of palliative care for patients with chronic and
progressive neurological disease. European journal of neurology 2016, 23(1):30-38.
15. Department of Health: The Irish National Dementia Strategy. In. Dublin, Ireland. ; 2014.
16. Hayden C, Parke M, Lynch M, Kelly S: Planning for the Future Project: initiating ‘end of
life’discussions for people with dementia. 2013.
17. Sampson E, Ritchie C, Lai R, Raven P, Blanchard M: A systematic review of the scientific
evidence for the efficacy of a palliative care approach in advanced dementia. International
Psychogeriatrics 2005, 17(01):31-40.
18. Bennett MI, Davies EA, Higginson IJ: Review: delivering research in end-of-life care:
problems, pitfalls and future priorities. Palliative Medicine 2010, 24:456-461.
19. Daveson BA, Harding R, Derycke N, Berghe PV, Edwards S, Higginson IJ: The PRISMA
Symposium 4: how should Europe progress end-of-life and palliative clinical care research?
Recommendations from the proceedings. Journal of pain and symptom management 2011,
20. Kaasa S, Radbruch L: Palliative care research–priorities and the way forward. European
Journal of Cancer 2008, 44(8):1175-1179.
21. Murray S, Barclay S, Bennett MI, Kendall M, Amir Z, Lloyd-Williams M: Editorial: Palliative
care research in the community: it is time to progress this emerging field. Palliative
medicine 2008, 22(5):609-611.
22. Sigurdardottir KR, Haugen DF, van der Rijt CC, Sjøgren P, Harding R, Higginson IJ, Kaasa S:
Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe.
Report from a workshop. European Journal of Cancer 2010, 46(10):1815-1822.
23. Stevinson C, Preston N, Todd C: Defining priorities in prognostication research: results of a
consensus workshop. Palliative medicine 2010, 24(5):462-468.
24. Jones L, Candy B, Davis S, Elliott M, Gola A, Harrington J, Kupeli N, Lord K, Moore K, Scott S:
Development of a model for integrated care at the end of life in advanced dementia: A
whole systems UK-wide approach. Palliative medicine 2016, 30(3):279-295.
25. Palliative and end-of-life care Priority 532 Setting Partnership
26. Palliative and end-of-life care research in neurodegenerative disease. Report of the JPND
Action Group. [http://www.neurodegenerationresearch.eu/initiatives/jpnd-alignment537
27. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, Francke AL,
Jünger S, Gove D, Firth P: White paper defining optimal palliative care in older people with
dementia: a Delphi study and recommendations from the European Association for
Palliative Care. Palliative medicine 2013:0269216313493685.
28. Hodges BE: The Health Career Model. In: Nursing Practice and Health Care. 1st edn. Edited
by Hinchcliffe SM. London: Edward Arnold; 1989.
29. Jones P: Hodges' Model: Welcome to the QUAD. In., vol. 2016; 2016.
30. Department of Health: End-of-life Care Strategy. Promoting high quality care for adults at
the end of their life. In. England. ; July 2008.
31. Department of Health: Living Well with Dementia: A National Dementia Strategy. In.
England. ; 2009.
32. Department of Health: Prime Ministers Challenge on Dementia: Delivering major
improvements in dementia care and research by 2015. In. England. ; May 2013.
33. The Irish Hospice Foundation: Dementia Guidance Document 2: Advance care planning and
advance healthcare directives with a person with dementia. In. Dublin; 2016.
34. Government of Ireland: ASSISTED DECISION-MAKING (CAPACITY) ACT 2015. In., vol.
Number 64 of 2015,; 2015.
35. Jolley N: Locke: His philosophical thought. . Oxford: Oxford University Press; 1999.
36. Harrison Dening K, Jones L, Sampson EL: Preferences for end-of-life care: a nominal group
study of people with dementia and their family carers. Palliative Medicine 2013, 27(5):409-
37. Fratiglioni L, Qiu C: Epidemiology of dementia. In: Oxford Textbook of Old Age Psychiatry.
edn. Edited by Dening T, Thomas A. Oxford: Oxford University Press; 2013: 389-414.
38. High DM: Surrogate decision making. Who will make decisions for me when I can't? Clinics
in geriatric medicine 1994, 10(3):445-462.
39. Whitlatch CJ, Piiparinen R, Feinberg LF: How well do family caregivers know their relatives'
care values and preferences? Dementia 2009, 8(2):223-243.
40. Wendler D, Rid A: Systematic review: the effect on surrogates of making treatment
decisions for others. Annals of Internal Medicine 2011, 154(5):336-346.
41. Emanuel EJ, Emanuel LL: Proxy decision making for incompetent patients: an ethical and
empirical analysis. Jama 1992, 267(15):2067-2071.
42. Dening KH, King M, Jones L, Vickestaff V, Sampson EL: Advance Care Planning in Dementia:
Do Family Carers Know the Treatment Preferences of People with Early Dementia? PLoS
One 2016, 11(7):e0159056.
43. Dening KH, Jones L, Sampson EL: Advance care planning for people with dementia: a
review. International Psychogeriatrics 2011, 23(10):1535-1551.
44. Xie J, Brayne C, Matthews FE: Survival times in people with dementia: analysis from
population based cohort study with 14 year follow-up. bmj 2008, 336(7638):258-262.
45. Dening KH, Jones L, Sampson EL: Preferences for end-of-life care: a nominal group study of
people with dementia and their family carers. Palliative Medicine 2013, 27(5):409-417.
46. Brodaty H, Donkin M: Family Caregivers of people with dementia. Dialogues in Clinical
Neuroscience 2009, 11:217-228.
47. Harrison-Dening K, Wharrad J: Admiral nursing: responding to the call for better end of life
care for people with dementia. Signpost: Journal of Dementia and Mental Health Care of
Older People 2010, 14(3):27-31.
48. Kitwood TM: Dementia reconsidered: The person comes 583 first.: Open University Press.;
49. Dewing J, Chalfont G, Cotter A, Fear T, Brown-Wilson C, Crowhurst K, Torry B, Leyshon S,
Wilkinson H, Stanley D: Understanding care homes: a research and development
perspective: Jessica Kingsley Publishers; 2008.
50. Clare L, Whitaker R, Quinn C, Jelley H, Hoare Z, Woods B, Downs M, Wilson B: AwareCare:
development and validation of an observational measure of awareness in people with
severe dementia. Neuropsychological rehabilitation 2012, 22(1):113-133.
51. Sampson E, Mandal U, Holman A, Greenish W, Dening KH, Jones L: Improving end of life
care for people with dementia: a rapid participatory appraisal. BMJ supportive & palliative
52. Treloar A, Crugel M, Adamis D: Palliative and end of life care of dementia at home is
feasible and rewarding Results from theHope for Home'study. Dementia 2009, 8(3):335-
53. Sonola L, Thiel V, Goodwin N, Kodner D: The Kings Fund- Oxleas Advanced Dementia
Service Supporting carers and building resilience. In.; 2013.
54. Research and Evaluation Team: The Dementia Voice Nurse Service Pilot. Overview of
Findings and Learning from the Evaluation of the Two Year Pilot Programme December
2008 – December 2010. In.; March 2012.
55. Livingston G, Barber J, Rapaport P, Knapp M, Griffin M, Romeo R, King D, Livingston D, Lewis-
Holmes E, Mummery C: START (STrAtegies for RelaTives) study: a pragmatic randomised
controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual605
based coping strategy programme in promoting the mental health of carers of people with
dementia. Health Technology Assessment 2014, 18(61):1-242.
56. Moore GF, Audrey S, Barker M, Bond L, Bonell C, Hardeman W, Moore L, O’Cathain A, Tinati
T, Wight D: Process evaluation of complex interventions: Medical Research Council
guidance. bmj 2015, 350:h1258.
57. Lloyd-Williams M, Abba K, Crowther J: Supportive and palliative care for patients with
chronic mental illness including dementia. Current opinion in supportive and palliative care
- Dementia – Neurodegenerative diseases – Interdisciplinary research – Research priorities – Advance care planning – Personhood – Care at home