Clinical and ethical issues in palliative care and dementia - An overview

European Neurological Review

Volumn 5, Issue 2, 2010, Pages 29-33

  Teper, Emma L ^a   Hughes, Julian C ^b  

^a GATESHEAD HEALTH NHS FOUNDATION TRUST   (United Kingdom)

^b NEWCASTLE UNIVERSITY   (United Kingdom)

Author keywords

Artificial nutrition and hydration; Dementia; Ethics; Fever; Infection; Pain; Palliative care; Psychosocial approaches; Resuscitation; Spirituality

Indexed keywords

EID: 84856606029     PISSN: 17583837     EISSN: 17583845     Source Type: Journal    
DOI: 10.17925/ENR.2010.05.02.29     Document Type: Article

References (78)

1. http://ec.europa.eu/health/ph_information/dissemination/echi/docs/dementia2_en.pdf (accessed 11 September 2010).
2. Alzheimer's Disease International (ADI), World Alzheimer Report (2009): Executive Summary, London: Alzheimer's Disease International, 2009.
3. Jin H, Gatz M, Johansson B, Pedersen NL, Neurology, 2004;63:739-41.
4. Fratiglioni L, von Strauss E, Qui C. In: Jacoby R, Oppenheimer C, Dening T, Thomas A (eds), Oxford Textbook of Old Age Psychiatry, Oxford: Oxford University Press, 2008;391-406.
5. Mitchell SL, Teno JM, Kiely DK, et al., N Engl J Med, 2009;361:1529-38.
6. Neale R, Brayne C, Johnson AL, Int J Epidemiol, 2001;30: 1383-8.
7. Sampson EL, Blanchard MR, Jones L, et al., Br J Psychiatry, 2009;195:61-6.
8. Hughes JC, Lancet Neurol, 2010;9:25-7.
9. Lloyd-Williams M, Eur J Cancer Care (Engl), 1996;5:53-5.
10. Volicer L, Hurley A, Hospice Care for Patients with Advanced Progressive Dementia, New York: Springer Publishing Company, 1998.
11. Shega JW, Levin A, Hougham GW, et al., J Palliat Med, 2003;6:315-20.
12. Sachs G, Shega J, Cox-Hayley D, J Gen Intern Med, 2004:19:1057-63.
13. Mitchell SL, Morris JN, Park PS, Fries BE, J Palliat Med, 2004;7:808-16.
14. Hughes JC, Robinson L, Volicer L, BMJ, 2005;330:57-8.
15. Robinson L, Hughes J, Daley S, et al., Rev Clin Gerontol, 2005;15:135-48.
16. Hughes JC, Les Cahiers de la Fondation Médéric Alzheimer, 2006;2:17-23.
17. Hughes JC (Ed.), Palliative Care in Severe Dementia, London: Quay Books, 2006.
18. Sampson EL, Ritchie CW, Lai R, et al., Int Psychogeriatr, 2005:17:31-40.
19. Hughes JC, Hedley K, Harris D. In: Hughes JC (ed.), Palliative Care in Severe Dementia, London: Quay Books, 2006;1-11.
20. Gillick MR, In: Hughes JC, Lloyd-Williams M, Sachs GA (eds), Supportive Care for the Person with Dementia, Oxford: Oxford University Press, 2010;263-70.
21. Hertogh C. In: Hughes JC, Lloyd-Williams M, Sachs GA (eds), Supportive Care for the Person with Dementia, Oxford: Oxford University Press, 2010;271-80.
22. Small N, Froggatt K, Downs M (eds), Living and Dying with Dementia: Dialogues about Palliative Care, Oxford: Oxford University Press, 2008.
23. Hughes JC, Lloyd-Williams M, Sachs GA (eds), Supportive Care for the Person with Dementia, Oxford: Oxford University Press, 2010.
24. Sampson EL, Gould V, Lee D, Blanchard MR, Age Ageing, 2006;35:187-9.
25. Creditor MC, Ann Intern Med, 1993;118:219-23.
26. Morrison RS, Siu AL, J Pain Symptom Manage, 2000;19:240-8.
27. McCarthy M, Addington-Hall J, Altmann D, Int J Geriatr Psychiatry, 1997;12:404-9.
28. Hughes J, Jolley D, Jordan A, Sampson E, Advances in Psychiatric Treatment, 2007;13:251-60.
29. Abbey J. Available at: www.alzheimers.org.au/upload/PalliativeCare.pdf (accessed 11 September 2010).
30. Alzheimer Europe, Alzheimer Europe Report: End-of-Life Care for People with Dementia, Luxembourg: Alzheimer Europe, 2008.
31. Volicer L. Available at: www.alz.org/national/documents /endoflifelitreview.pdf (accessed 11 September 2010).
32. Tilly J, Fok A. Available at: www.alz.org/national/documents/End_interviewpaper_III.pdf (accessed 11 September 2010).
33. NICE-SCIE, Dementia: Supporting People with Dementia and their Carers in Health and Social Care (NICE Clinical Guideline 42), London: National Institute for Health and Clinical Excellence and Social Care Institute for Excellence, 2006.
34. The National Council for Palliative Care, Power of Partnerships: Palliative Care and Dementia, London: The National Council for Palliative Care, 2009.
35. Jordan A, Lloyd-Williams M. In: Hughes JC, Lloyd-Williams M, Sachs GA (eds), Supportive Care for the Person with Dementia, Oxford: Oxford University Press, 2010;129-37.
36. The National Council for Palliative Care, Out of the Shadows: End of Life Care for People with Dementia, London: The National Council for Palliative Care, 2009.
37. Peterborough Palliative Care In Dementia Group. Available at: www.endoflifecareforadults.nhs.uk/assets/downloads/Compromised_swallowing_guide_July_2010.pdf (accessed 11 September 2010).
38. Herr K, Bjoro K, Decker S, J Pain Symptom Manage, 2006;31: 170-92.
39. Zwakhalen SM, Hamers JPH, Abu-Saad HH, Berger MPF, BMC Geriatr, 2006;6:3.
40. Jordan A, Hughes J, Pakresi M, et al., Int J Geriatr Psychiatry, 2010; [Epub ahead of print]
41. Jordan AI, Regnard C, Hughes JC, J Pain Symptom Manage, 2007;33:658-60.
42. Scherder EJ, Sergeant JA, Swaab DF, Lancet Neurol, 2003:2:677-86.
43. Fabiszewski KJ, Volicer B, Volicer L, JAMA, 1990;263:3168-72.
44. Hurley AC, Volicer BJ, Volicer L, Alzheimer Dis Assoc Disord, 1996;10:5-10.
45. Department of Health, End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life, London: Department of Health, 2008.
46. van der Steen JT, Mehr DR, Kruse RL, et al., Int J Geriatr Psychiatry, 2007;22:1013-9.
47. D'Agata, E, Mitchell SL, Arch Intern Med, 2008;168:357-62.
48. van der Steen JT, Pasman HRW, Ribbe MW, et al., Scand J Infect Dis, 2009;41:143-51.
49. Rozzini, R, Trabucchi M, Arch Intern Med, 2008;168:2497-8.
50. van der Steen JT, Ooms ME, Ader HJ, et al., Arch Intern Med, 2002;162:1753-60.
51. Sampson EL, Candy B, Jones L, Cochrane Database Syst Rev, 2009;(2):CD007209.
52. Ahronheim JC, Mulvihill M, Sieger C, et al., J Am Geriatr Soc, 2001;49:148-52.
53. Mitchell SL, Kiely DK, Gillick MR, J Am Geriatr Soc, 2003;51:75-9.
54. Mitchell SL, Kiely DK, J Am Med Dir Assoc, 2001;2:10-4.
55. Gove D, Sparr S, Dos Santos B, et al., J Nutr Health Aging, 2010;14:136-8.
56. Finucane TE, Christmas C, Travis K, JAMA, 1999;282: 1365-70.
57. Gillick MR, N Engl J Med, 2000;342:206-10.
58. Morris J, Volicer L, Nutr Clin Care, 2001;4:148-55.
59. Volicer L, AAHPM Bulletin, 2001;1:1-18.
60. Regnard C, Leslie P, Crawford H, et al., Age Ageing, 2010;39:282-4.
61. Guyonnet GS, Abellan Van Kan G, Alix E, et al., J Nutr Health Aging, 2007;11:38-48.
62. Ghusn HF, Teasdale TA, Pepe PE, Ginger VF, J Am Geriatr Soc, 1995;43:520-7.
63. Ebell MH, Becker LA, Barry HC, Hagen M, J Gen Intern Med, 1998;13:805-16.
64. Nuffield Council on Bioethics. Available at: www.nuffieldbioethics.org/dementia (accessed 17 September 2010).
65. Sapp S, In: Hughes JC, Lloyd-Williams M, Sachs GA (eds), Supportive Care for the Person with Dementia, Oxford: Oxford University Press, 2010;199-206.
66. Thorgrimsen L, Spector A, Wiles A, Orrell M, Cochrane Database Syst Rev, 2003;(3):CD003150.
67. Vink AC, Birks J, Bruinsma MS, Scholten RJPM, Cochrane Database Syst Rev, 2004;(3):CD003477.
68. Simard J, Volicer L, In: Hughes JC, Lloyd-Williams M, Sachs GA (eds), Supportive Care for the Person with Dementia, Oxford: Oxford University Press, 2010;291-9.
69. Frank J, In: Hughes JC, Lloyd-Williams M, Sachs GA (eds), Supportive Care for the Person with Dementia, Oxford: Oxford University Press, 2010;207-15.
70. Hughes JC, Hope T, Reader S, Rice D, J R Soc Med, 2002;95:242-6.
71. Post, SG, Whitehouse PJ, J Am Geriatr Soc, 1995;43:1423-9.
72. Fisk JD, Sadovnick AD, Cohen CA, et al., Can J Neurol Sci, 1998;25:242-8.
73. Post SG, The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying (2nd edn), Baltimore: Johns Hopkins University Press, 2000.
74. Hughes JC, Baldwin C, Ethical Issues in Dementia Care: Making Difficult Decisions, London: Jessica Kingsley, 2006.
75. John S, In: Ashcroft RE, Dawson A, Draper H, McMillan JR (eds), Principles of Health Care Ethics, Chichester: John Wiley, 2007;269-72.
76. Hughes JC, Dove P, In: Hughes JC (ed.), Palliative Care in Severe Dementia, London: Quay Books, 2006;45-54.
77. World Health Organization. Available at: www.who.int/cancer/palliative/definition/en/ (accessed 17 September 2010).
78. Hughes JC, Thinking Through Dementia, Oxford: Oxford University Press, 2011; in press.