Achieving consensus and controversy around applicability of palliative care to dementia

International Psychogeriatrics

Volumn 28, Issue 1, 2016, Pages 133-145

  Van Der Steen, Jenny T ^a   Radbruch, Lukas ^b,k   De Boer, Marike E ^a   Jünger, Saskia ^c   Hughes, Julian C ^d,l   Larkin, Phil ^e   Gove, Dianne ^f   Francke, Anneke L ^a,g   Koopmans, Raymond T C M ^h,m   Firth, Pam ⁱ   Volicer, Ladislav ^j   Hertogh, Cees M P M ^a  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b UNIVERSITY HOSPITAL BONN   (Germany)

^c HANNOVER MEDICAL SCHOOL   (Germany)

^d NORTH TYNESIDE GENERAL HOSPITAL   (United Kingdom)

^e UNIVERSITY COLLEGE DUBLIN   (Ireland)

^f ALZHEIMER EUROPE   (Luxembourg)

^g NETHERLANDS INSTITUTE FOR HEALTH SERVICES RESEARCH   (Netherlands)

^h RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

ⁱ School of Aging Studies ^*  (United Kingdom)

^j UNIVERSITY OF SOUTH FLORIDA   (United States)

^k Malteser Hospital Bonn/Rhein Sieg   (Germany)

^l NEWCASTLE UNIVERSITY   (United Kingdom)

^m Verpleeghuis Joachim en Anna   (Netherlands)

more..

Author keywords

comfort care; consensus; dementia; end of life; guidelines; palliative care

Indexed keywords

ADULT; AGE DISTRIBUTION; ARTICLE; COMORBIDITY; CONTROLLED STUDY; DEMENTIA; FEMALE; HEALTH CARE DELIVERY; HEALTH CARE NEED; HEALTH SERVICE; HUMAN; MAJOR CLINICAL STUDY; MALE; MENTAL DISEASE; PALLIATIVE THERAPY; PRACTICE GUIDELINE; TREATMENT OUTCOME; TREATMENT RESPONSE; AGED; CONSENSUS; DELPHI STUDY; EUROPE; MEDICAL SOCIETY; MIDDLE AGED; MULTIVARIATE ANALYSIS; REGRESSION ANALYSIS; STANDARDS;

ADULT; AGED; CONSENSUS; DELPHI TECHNIQUE; DEMENTIA; EUROPE; FEMALE; HUMANS; MALE; MIDDLE AGED; MULTIVARIATE ANALYSIS; PALLIATIVE CARE; PRACTICE GUIDELINES AS TOPIC; REGRESSION ANALYSIS; SOCIETIES, MEDICAL;

EID: 84949319529     PISSN: 10416102     EISSN: 1741203X     Source Type: Journal    
DOI: 10.1017/S1041610215000824     Document Type: Article

References (29)

1. Akushevich, I., Kravchenko, J., Ukraintseva, S., Arbeev, K. and Yashin, A. I. (2012). Age patterns of incidence of geriatric disease in the U.S. elderly population: medicare-based analysis. Journal of the American Geriatrics Society, 60, 323-327. doi: 10.1111/j.1532-5415.2011.03786.x.
2. Alemayehu, E. et al. (1991). Variability in physicians decisions on caring for chronically ill elderly patients: an international study. CMAJ: Canadian Medical Association Journal, 144, 1133-1138.
3. Brayne, C., Gao, L., Dewey, M. and Matthews, F. E.; Medical Research Council Cognitive Function and Ageing Study Investigators (2006). Dementia before death in ageing societies-the promise of prevention and the reality. PLoS Medicine, 3, e397.
4. Davies, N. et al.; IMPACT research team (2014). Quality palliative care for cancer and dementia in five European countries: some common challenges. Aging and Mental Health, 18, 400-410. doi: 10.1080/13607863.2013.843157.
5. European Association for Palliative Care (EAPC) (2009). White Paper on standards and norms for hospice and palliative care in Europe: part 1. European Journal of Palliative Care, 16, 278-289.
6. Ferri, C. P. et al.; Alzheimers Disease International (2005). Global prevalence of dementia: a Delphi consensus study. Lancet, 366, 2112-2117.
7. Froud, R. et al. (2011). Reporting outcomes of back pain trials: a modified Delphi study. European Journal of Pain, 15, 1068-1074. doi: 10.1016/j.ejpain.2011.04.015.
8. Hinkka, H., Kosunen, E., Metsanoja, R., Lammi, U. K. and Kellokumpu-Lehtinen, P. (2002). Factors affecting physicians decisions to forgo life-sustaining treatments in terminal care. Journal of Medical Ethics, 28, 109-114.
9. Iqbal, S. and Pipon-Young, L. (2009). The Delphi method. The Psychologist, 22, 598-600.
10. Johnson, T. P. and Wislar, J. S. (2012). Response rates and nonresponse errors in surveys. JAMA, 307, 1805-1806.
11. Lee, D. and Begley, C. E. (2012). Physician attitudes towards chronic disease management in the USA. Health Services Management Research, 25, 60-67. doi: 10.1258/hsmr.2012.011026.
12. Meijering, J. V., Kampen, J. K. and Tobi, H. (2013). Quantifying the development of agreement among experts in Delphi studies. Technological Forecasting and Social Change, 80, 1607-1614.
13. Molloy, D. W. et al. (1991). Factors affecting physicians decisions on caring for an incompetent elderly patient: an international study. CMAJ: Canadian Medical Association Journal, 145, 947-952.
14. Nakanishi, M. et al. (2015). An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper. International Psychogeriatrics, February 13, Epublished ahead of print.
15. National Consensus Project for Quality Palliative Care (2013). Clinical Practice Guidelines for Quality Palliative Care, 3rd edn, Pittsburgh PA, USA: National Consensus Project. ISBN 1-934654-35-3.
16. National Palliative Care Research Center (NPCRC). What is Palliative Care? http://www.npcrc.org/content/15/About-Palliative-Care.aspx; last accessed 3 February 2015.
17. Powell, C. (2003). The Delphi technique: myths and realities. Journal of Advanced Nursing, 41, 376-382.
18. Procter, E. (2012). Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia? International Journal of Palliative Nursing, 18, 339-347.
19. Quill, T. E. and Abernethy, A. P. (2013). Generalist plus specialist palliative care-creating a more sustainable model. The New England Journal of Medicine, 368, 1173-1175. doi: 10.1056/NEJMp1215620.
20. Treves, T. A. and Korczyn, A. D. (2012). Modeling the dementia epidemic. CNS Neuroscience and Therapeutics, 18, 175-181. doi: 10.1111/j.1755-5949.2011.00242.x.
21. United Nations Statistics Division (2013). Composition of Macro Geographical (continental) Regions, Geographical Sub-regions, and Selected Economic and other Groupings. http://unstats.un.org/unsd/methods/m49/m49regin.htm; last accessed 3 February 2015.
22. van der Steen, J. T. (2010). Dying with dementia: what we know after more than a decade of research. Journal of Alzheimers Disease, 22, 37-55. doi: 10.3233/JAD-2010-100744.
23. van der Steen, J. T., Hertogh, C. M., de Graas, T., Nakanishi, M., Toscani, F. and Arcand, M. (2013a). Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation. Journal of Medical Ethics, 39, 104-109. doi: 10.1136/medethics-2012-100903.
24. van der Steen, J. T., Onwuteaka-Philipsen, B. D., Knol, D. L., Ribbe, M. W. and Deliens, L. (2013b). Caregivers understanding of dementia predicts patients comfort at death: a prospective observational study. BMC Medicine, 11, 105. doi: 10.1186/1741-7015-11-105.
25. van der Steen, J. T. et al. (2014a). 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, 28, 197-209. doi: 10.1177/0269216313493685.
26. van der Steen, J. T., Ribbe, M. W., Deliens, L., Gutschow, G. and Onwuteaka-Philipsen, B. D. (2014b). Retrospective and prospective data collection compared in the Dutch End Of Life in Dementia (DEOLD) study. Alzheimer Disease and Associated Disorders, 28, 88-94. doi: 10.1097/WAD.0b013e318293b380.
27. van der Steen, J. T. et al. (2014c). Factors associated with initiation of advance care planning in dementia: a systematic review. Journal of Alzheimers Disease, 40, 743-757. doi: 10.3233/JAD-131967.
28. World Health Organization (WHO) (2002). Definition of Palliative Care. http://www.who.int/cancer/palliative/definition/en/; last accessed 24 February 2015.
29. World Health Organization (WHO) (2012). Dementia: A Public Health Priority. Geneva, Switzerland. ISBN 978 92 4 156445 8.