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

BMC Palliative Care

Volumn 17, Issue 1, 2017, Pages

  Fox, Siobhán ^a   Fitzgerald, Carol ^a   Harrison Dening, Karen ^b   Irving, Kate ^c   Kernohan, W George ^d   Treloar, Adrian ^e   Oliver, David ^f,g   Guerin, Suzanne ^h   Timmons, Suzanne ^a  

^a UNIVERSITY COLLEGE CORK   (Ireland)

^b DEMENTIA UK   (United Kingdom)

^c DUBLIN CITY UNIVERSITY   (Ireland)

^d UNIVERSITY OF ULSTER   (United Kingdom)

^e OXLEAS NHS FOUNDATION TRUST   (United Kingdom)

^f UNIVERSITY OF KENT   (United Kingdom)

^g European Association of Palliative Care   (Belgium)

^h UNIVERSITY COLLEGE DUBLIN   (Ireland)

Author keywords

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

Indexed keywords

ADVANCE CARE PLANNING; CLINICAL RESEARCH; DEGENERATIVE DISEASE; DEMENTIA; EVIDENCE BASED PRACTICE; HOME CARE; HUMAN; INTERDISCIPLINARY RESEARCH; IRELAND; PALLIATIVE THERAPY; PERSONHOOD; PRACTICE GUIDELINE; RESEARCH PRIORITY; REVIEW; TERMINAL CARE; UNITED KINGDOM; WORKSHOP; EDUCATION; INTERDISCIPLINARY EDUCATION; PROCEDURES; PSYCHOLOGY; STANDARDS; TRENDS;

DEMENTIA; EDUCATION; HUMANS; INTERDISCIPLINARY STUDIES; IRELAND; PALLIATIVE CARE;

EID: 85023752603     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/s12904-017-0221-0     Document Type: Review

References (57)

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 (series DR): 2015. In.; November 2016.
3. World Health Organisation: Dementia fact sheet. WHO, 2017. http://www.who.int/mediacentre/factsheets/fs362/en/ Accessed on 05 July 2017.
4. Pierce M, Cahill S, O'Shea E. Prevalence and projections of dementia in Ireland, 2011-2046. Trinity College Dublin: Dublin, Ireland; 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 Intern Med. 2017;177(1):51-8.
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. J Palliat Med. 2007;10(4):845-50.
7. Higginson IJ. End-of-life care: lessons from other nations. J Palliat Med. 2005;8(supplement 1):s-161-73.
8. Bayer A. Death with dementia: the need for better care. Age Ageing. 2006;35:101-2.
9. Hughes JC, Robinson L, Volicer L. Specialist palliative care in dementia. BMJ. 2005;330(7482):57-8.
10. WHO definition of palliative care [ http://www.who.int/cancer/palliative/definition/en/ ]. Accessed 5 July 2017.
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;83:561-7.
13. Borasio GD. The role of palliative care in patients with neurological diseases. Nat Rev Neurol. 2013;9:292-5.
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. Eur J Neurol. 2016;23(1):30-8.
15. Department of Health: The Irish National Dementia Strategy. Dublin: DoH; 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. Int Psychogeriatr. 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. Palliat Med. 2010;24:456-61.
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. J Pain Symptom Manag. 2011;42(4):511-6.
20. Kaasa S, Radbruch L. Palliative care research-priorities and the way forward. Eur J Cancer. 2008;44(8):1175-9.
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. Palliat Med. 2008;22(5):609-11.
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. Eur J Cancer. 2010;46(10):1815-22.
23. Stevinson C, Preston N, Todd C. Defining priorities in prognostication research: results of a consensus workshop. Palliat Med. 2010;24(5):462-8.
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. Palliat Med. 2016;30(3):279-95.
25. Palliative and end-of-life care Priority Setting Partnership [ https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP-ExecSummary-English.pdf ]. Accessed 5 July 2017.
26. Palliative and end-of-life care research in neurodegenerative disease. Report of the JPND Action Group. [ http://www.neurodegenerationresearch.eu/initiatives/jpnd-alignment-actions/palliative-care/ ]. Accessed 5 July 2017.
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. Palliat Med. 2013; doi: 10.1177/0269216313493685.
28. Hodges BE. The health Career model. In: Hinchcliffe SM, editor. Nursing practice and health care. 1st ed. 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. England: DoH; 2008.
31. Department of Health. Living Well with Dementia: A National Dementia Strategy. England: DoH; 2009.
32. Department of Health. Prime Ministers Challenge on Dementia: Delivering major improvements in dementia care and research by 2015. England: DoH; 2013.
33. The Irish Hospice Foundation: Dementia Guidance Document 2: Advance care planning and advance healthcare directives with a person with dementia. Dublin: IHF; 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. Palliat Med. 2013;27(5):409-17.
37. Fratiglioni L, Qiu C. Epidemiology of dementia. In: Dening T, Thomas A, editors. Oxford textbook of old age psychiatry. Oxford: Oxford University Press; 2013. p. 389-414.
38. High DM. Surrogate decision making. Who will make decisions for me when I can't? Clin Geriatr Med. 1994;10(3):445-62.
39. Whitlatch CJ, Piiparinen R, Feinberg LF. How well do family caregivers know their relatives' care values and preferences? Dementia. 2009;8(2):223-43.
40. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336-46.
41. Emanuel EJ, Emanuel LL. Proxy decision making for incompetent patients: an ethical and empirical analysis. JAMA. 1992;267(15):2067-71.
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. Int Psychogeriatr. 2011;23(10):1535-51.
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):258-62.
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. Palliat Med. 2013;27(5):409-17.
46. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11:217-28.
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 first. Buckingham: Open University Press; 1997.
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):113-33.
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 care. 2012: doi: 10.1136/bmjspcare-2011-000177.
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):335-47.
53. Sonola L, Thiel V, Goodwin N, Kodner D: The kings fund- Oxleas advanced dementia service supporting carers and building resilience. 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 manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technol Assess. 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. 2014;8(3):303-7.