Modelling the landscape of palliative care for people with dementia: A European mixed methods study

BMC Palliative Care

Volumn 12, Issue 1, 2013, Pages

  Iliffe, Steve ^a   Davies, Nathan ^a   Vernooij Dassen, Myrra ^b   Van Riet Paap, Jasper ^b   Sommerbakk, Ragni ^c   Mariani, Elena ^d   Jaspers, Birgit ^e   Radbruch, Lukas ^e,f   Manthorpe, Jill ^g   Maio, Laura ^a   Haugen, Dagny ^c   Engels, Yvonne ^b  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

^c NORWEGIAN UNIVERSITY OF SCIENCE AND TECHNOLOGY   (Norway)

^d UNIVERSITY OF BOLOGNA   (Italy)

^e UNIVERSITY HOSPITAL BONN   (Germany)

^f Malteser Hospital Bonn/Rhein Sieg   (Germany)

^g KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BEREAVEMENT; DEMENTIA; EUROPE; HEALTH CARE DELIVERY; HEALTH CARE PLANNING; HEALTH CARE POLICY; HUMAN; INTERVIEW; LABOR; MEDICAL RESEARCH; MODEL; PALLIATIVE THERAPY; PATIENT CARE; PRIMARY MEDICAL CARE; RISK MANAGEMENT; SCIENTIST; SOCIAL WELFARE; TERMINAL CARE;

EID: 84881190438     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/1472-684X-12-30     Document Type: Article

References (76)

1. European Parliament European Initiative on Alzheimer's Disease and Other Dementias http://www.europarl.europa.eu/oeil/popups/ficheprocedure.do?lang= en&reference=2010/2084 (INI) Accessed 23/04/2012
2. Common threads? Palliative care service developments in seven European countries. Clark D, ten Have H, Janssens R, on behalf of the Palliative Care Ethics (Pallium) project, Palliat Med 2000 14 479 490 10.1191/026921600701536408 11219878
3. Factors and indicators on palliaitive care development in 52 countries of the WHO European region: results of an EAPC task force. Centeno C, Clark D, Lynch T, Racafort J, Praill D, De Lima L, et al. Palliat Med 2007 21 463 471 10.1177/0269216307081942 17846085 (Pubitemid 47616600)
4. White Paper on standards and norms for hospice and palliative care in Europe: part 1. Radbruch L, Payne S, the Board of Directors of the EAPC, European J Palliat Care 2009 16 6 278 288
5. White Paper on standards and norms for hospice and palliative care in Europe: part 2. Radbruch L, Payne S, the Board of Directors of the EAPC, European J Palliat Care 2009 17 1 22 32
6. Palliative Care: the World Health Organization's global perspective. Sepulveda C, Marlin A, Yoshida T, Ullrich A, J Pain Symptom Manage 2002 24 91 96 10.1016/S0885-3924(02)00440-2 12231124 (Pubitemid 35291983)
7. A new international framework for palliative care. Ahmedzhai S, Costa A, Blengini C, Bosch A, San-Ortiz J, Ventafridda V, et al. European J Cancer 2004 40 2192 2200 10.1016/j.ejca.2004.06.009 (Pubitemid 39348869)
8. Dying with dementia: what we know after more than a decade of research. van der Steen J, J Alzheimer's Dis 2010 22 37 55 23946416
9. Illness trajectories and palliative care. Murray SA, Kendall M, Boyd K, Sheikh A, Br Med J 2005 330 7498 1007 1011 10.1136/bmj.330.7498.1007 (Pubitemid 40604286)
10. Approaching the end of life and dying with dementia in care homes: the accounts of family carers. Hennings J, Froggatt K, Keady J, Rev Clin Gerontol 2010 20 114 127 10.1017/S0959259810000092
11. Barriers to excellent end-of-life care for patients with dementia. Sachs GA, Shega JW, Cox-Hayley D, J Gen Intern Med 2004 19 10 1057 1063 10.1111/j.1525-1497.2004.30329.x 15482560 (Pubitemid 39431144)
12. Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up. Xie J, Brayne C, Matthews FE, Medical Research Council Cognitive, Function and Ageing Study Collaborators, Br Med J 2008 336 7638 258 262 10.1136/bmj.39433.616678.25 (Pubitemid 351251626)
13. Zheng L, Finucane A, Oxenham D, McLoughlin P, Murray S, Identifying patients for generalist and specialist palliative care Glasgow: Society of Academic Primary Care conference 2012
14. Mason B, Epiphaniou E, Nanton V, Daveson B, Harding R, Shipman C, Higginson I, et al. Towards improving the co-ordination of care for progressive life-limiting illnesses: a UK mixed methods study Glasgow: Society of Academic Primary Care conference 2012
15. Older people dying with dementia: a nationwide study. Meeussen K, Van den Block L, Echteld M, Boffin N, Bilsen J, Van Casteren V, Deliens L, Int Psychogeriatr 2012 24 10 1581 1591 10.1017/S1041610212000865 22647226
16. Palliative care for the geriatric patient in Europe. Survey describing the services, policies, legislation, and associations. Piers R, Pautex S, Curiale V, Pfisterer M, Van Nes MC, Rexach L, Ribbe M, Van Den Noortgate N, Z Gerontol Geriatr 2010 43 6 381 385 10.1007/s00391-010-0149-y 21103991
17. Warner M, Furnish S, Longley M, Lawlor B, Alzheimer's Disease: Policy and Practice Across Europe Oxford: Radcliff Medical Press 2002 23946416
18. Palliative care in Europe: an emerging approach to comparative analysis. Clark D, Centeno C, Clin Med 2006 6 2 197 201 10.7861/clinmedicine.6-2-197 16688982
19. End-of-life care: lessons from other nations. Higginson I, J Palliative Medicine 2005 8 S1 161 S173
20. Content of advance directives for individuals with advanced dementia. Triplett P, Black BS, Phillips H, Fahrendorf SR, Schwartz J, Angelino AF, Anderson D, Rabins PV, J Aging Health 2008 20 5 583 596 10.1177/0898264308317822 18625761 (Pubitemid 351951636)
21. The communication challenges faced in adopting a palliative care approach in advanced dementia. Johnson A, Chang E, Daly J, Harrison K, Noel M, Hancock K, Easterbrook S, Intl J Nurs Pract 2009 15 5 467 474 10.1111/j.1440-172X.2009. 01795.x
22. Dying with dementia in long-term care. Sloane PD, Zimmerman S, Williams CS, Hanson LC, Gerontologist 2008 48 6 741 751 10.1093/geront/48.6.741 19139248
23. In solitary confinement': planning end-of-life well-being with people with advanced dementia, their family and professional carers. Godwin B, Waters H, Mortality 2009 14 3 265 285 10.1080/13576270903056840
24. Cause of death in patients with dementia disorders. Brunnström HR, Englund EM, Eur J Neurol. 2009 16 4 488 492 10.1111/j.1468-1331.2008.02503.x 19170740
25. Dying well with dementia: qualitative examination of end-of-life care. Lawrence V, Samsi K, Murray J, Harari D, Banerjee S, Br J Psychiatry 2011 199 5 417 422 10.1192/bjp.bp.111.093989 21947653
26. Older people living alone at the end of life in the UK: research and policy challenges. Rolls L, Seymour J, Froggatt K, Hanratty B, Palliat Med 2010 25 6 650 657 20621946
27. Perceived barriers and facilitators for general practitioner-patient communication in palliative care: a systematic review. Slort W, Schweitzer B, Blankenstein A, Abarshi E, Riphagen I, Echteld M, et al. Palliat Med 2011 25 6 613 629 10.1177/0269216310395987 21273221
28. Improving end of life care: a critical review of the gold standards framework in primary care. Shaw K, Clifford C, Thomas K, Meehan H, Palliat Med 2010 24 3 317 329 10.1177/0269216310362005 20156934
29. The dementia social care workforce in England: secondary analysis of a national workforce dataset. Hussein S, Manthorpe J, Aging Ment Health 2012 16 1 110 118 10.1080/13607863.2011.596808 21777089
30. Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England. Seymour J, Kumar A, Froggatt K, Palliat Med 2011 25 2 125 138 10.1177/0269216310387964 21282349
31. Improving generalist end of life care: national consultation with practitioners, commissioners, academics and service user groups. Shipman C, Gysels M, White P, Worth A, Murray S, Barclay S, Forrest S, et al. BMJ 2008 337 1720 10.1136/bmj.a1720 18829640
32. The need for new perspectives on evaluation of palliative care. Grande G, Preston N, Palliat Med 2011 25 8 737 738 10.1177/0269216311425641 22127208
33. Evaluating medical expert systems: what to test and how? Wyatt J, Spiegelhalter D, Med Inform 1990 15 205 217 10.3109/14639239009025268 (Pubitemid 20299472)
34. Framework for design and evaluation of complex interventions to improve health. Campbell M, Fitzpatrick R, Haines A, Kinmonth A, Sandercock P, Spiegelhalter D, Tyrer P, BMJ 2000 321 7262 694 696 10.1136/bmj.321.7262.694 10987780
35. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. Dixon-Woods M, Cavers D, Agarwal D, Annandale E, Arthur A, Harvey J, et al. BMC Med Res Methodol 2006 6 35 10.1186/1471-2288-6-35 16872487 (Pubitemid 44337013)
36. Basic concepts and techniques of rapid appraisal. Beebe J, Human Organisation 1995 54 1 42 51
37. Evidence-based policy: proceed with care. Black N, BMJ 2001 323 275 279 10.1136/bmj.323.7307.275 11485961
38. Palliative care services for people with dementia: a synthesis of the literature reporting the views and experiences of professionals and family carers. Raymond M, Warner A, Davies N, Manthorpe J, Ahmedzhai S, Iliffe S, Dementia: the international journal of social studies published online 10 August 2012 10.1177/1471301212450538
39. Evaluating educational initiatives to improve palliative care for people with dementia: a narrative review. Raymond M, Warner A, Davies N, Baishnab E, Manthorpe J, Iliffe S, for the IMPACT research team, Dementia: the international journal of social studies Published online 7§ssup§th§esup§ February 2013 10.1177/1471301212474140
40. The Netherlands: health system review. Schäfer W, Kroneman M, Boerma W, van den Berg M, Westert G, Devillé W, van Ginneken E, Health Syst Transit 2010 12 1 1 229 21429862
41. Ahmedzai S, Gómez-Batiste X, Engels Y, Hasselaar J, Jaspers B, Leppert W, et al. Assessing Organisations to Improve Palliative Care in Europe Nijmegen: Vantilt Publishers 2010
42. Customer, consumer and user involvement in product development: a framework and a review of selected methods. Kaulio M, Total Qual Manag Bus Excell 1998 9 1 141 149 10.1080/0954412989333
43. Qualitative research methods in health technology assessment: a review of the literature. Murphy E, Dingwall R, Greatbatch D, Parker S, Watson P, Health Technol Assess 1998 2 16 112 120
44. A pragmatic view of thematic analysis. Aronson J, The Qualitative Report,Spring 1994 2 1 http://www.nova.edu/ssss/QR/BackIssues/QR2-1/aronson.html
45. Rhetoric or reality? Participatory research in the National Health service, UK. Dockery G, et al. Participatory research in health: issues and experiences London: Zed books, De Koning K, 1996 164 176
46. The nominal group as a research instrument for exploratory health studies. Van den Ven AH, Delbecq AL, Am J Public Health 1972 3 337 342
47. Worth A The use of the nominal group technique in research with community nurses. Carney O, McIntosh J, J Advanced Nursing 1996 23 1024 1029 10.1046/j.1365-2648.1996.09623.x (Pubitemid 126438780)
48. The nominal group technique: expanding the basic procedure and underlying assumptions. Bartunek JM, Murningham JK, Group & Organisation Studies 1984 9 3 417 432 10.1177/105960118400900307 23946964
49. Conceptual modelling: knowledge acquisition and model abstraction. Kotiadis K, Robinson S, Proceedings of the 2008 Winter Simulation Conference, Mason S, Hill R, Moench L, Rose O, Jefferson T, Fowler J, 951 958 http://www.informs-sim.org/wsc08papers/114.pdf (accessed 23/04/2012)
50. Psychiatric nurses' expertise, interest in end-of-life care, and requests for continuing education on end of life. Valente S, Saunders J, American J Hospice & Palliat Medicine 2010 27 1 24 30 10.1177/1049909109341873 23870414
51. The dementia difference: Practice changes after a workshop for staff on caring for people dying with Alzheimer's disease. Robinson J, Sudbury F, Alzheimer's and Dementia 2009 5 4 141 23946416
52. Improving the quality of dementia care: the role of education. Mittman B, Clin Gerontol 2005 29 2 61 69 (Pubitemid 43853883)
53. A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Sampson E, Ritchie C, Lai R, Raven P, Blanchard M, Int Psychogeriatrics 2005 17 1 31 40 10.1017/ S1041610205001018 (Pubitemid 40593645)
54. Advance care planning and hospital in the nursing home. Caplan GA, Meller A, Squires B, et al. Age Ageing 2006 36 6 581 585 (Pubitemid 44614152)
55. The experience of dying with dementia: a retrospective study. McCarthy M, Addington-Hall J, Altmann D, Int J Geriatric Psychiatry 1997 12 404 409 10.1002/(SICI)1099-1166(199703)12:3<404::AID-GPS529>3.0.CO;2-2 (Pubitemid 27148465)
56. "I live for today": A qualitative study investigating older people's attitudes to advance planning. Samsi K, Manthorpe J, Health Soc Care Community 2011 19 1 52 59 10.1111/j.1365-2524.2010.00948.x 20846274
57. Assessing decision-making capacity in the setting of palliative care research. Casarett DJ, J Pain Symptom Manage 2003 25 4 6 S13 10.1016/S0885-3924(03)00097-6 12691692 (Pubitemid 36411797)
58. Palliative care for people with dementia. Sampson E, Br Med Bull 2010 910.1093/bmb/ldq024 23926313
59. Caring for individuals with end-stage dementia at the end of life. Sanders S, Swails P, Dementia 2009 8 117 138 10.1177/1471301208099049
60. Hospice access for individuals with dementia. McCarty CE, Volicer L, Am J Alzheimers Dis Other Demen 2009 24 476 485 10.1177/1533317509348207 19812416
61. Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer. Ahronheim JC, Morrison RS, Baskin SA, Morris J, Meier DE, Arch Intern Med 1996 156 18 2094 2100 10.1001/archinte.1996.00440170110012 8862102 (Pubitemid 26346968)
62. Video decision support tool for advance care planning in dementia: randomised controlled trial. Volandes AE, Paasche-Orlow MK, Barry MJ, et al. BMJ 2009 338 2159 10.1136/bmj.b2159 19477893
63. Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. Zwakhalen SM, Hamers JP, Bu-Saad HH, et al. BMC Geriatr 2006 6 3 10.1186/1471-2318-6- 16441889
64. Difficulties in identifying distress and its causes in people with severe communication problems. Regnard C, Mathews D, Gibson L, et al. Int J Palliat Nurs 2003 9 173 176 12734454
65. Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). Regnard C, Reynolds J, Watson B, et al. J Intellect Disabil Res 2007 51 277 292 10.1111/j.1365-2788.2006.00875.x 17326809 (Pubitemid 46357249)
66. Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. Zwakhalen S, Hamers J, Abu-Saad H, Berger M, BMC Geriatr 2006 6 3 10.1186/1471-2318-6-3 16441889 (Pubitemid 43373415)
67. End of life care for community dwelling older people with dementia: an integrated review. Goodman C, Evans C, Wilcock J, Froggatt K, Drennan V, Sampson E, Blanchard M, Bissett M, Iliffe S, Int J Geriatric Psychiatry 2010 25 4 329 337 10.1002/gps.2343
68. Non-pharmacological intervention in dementia. Douglas D, et al. Adv Psychiatr Treat 2004 10 171 177 10.1192/apt.10.3.171 (Pubitemid 38628309)
69. A literature review of palliative care, end of life, and dementia. Roger KS, Palliat Support Care 2006 4 3 295 303 17066971
70. Therapeutic recreation for nursing home residents with dementia and accompanying agitation and/or anxiety. Putman L, Wang JT, The Closing Group, Am J Alzheimers Dis Other Demen 2007 22 3 167 175 10.1177/1533317507300514 17606525 (Pubitemid 47025515)
71. Keirse E, Beguin C, Desmedt M, Deveugele M, Menten J, Simoens S, et al. [Organisation of palliative care in Belgium]. Health Services Research (HSR) Brussel: Federaal Kenniscentrum voor de Gezondheidszorg (KCE) 2009 KCE reports 115A (D/2009/10.273/40)
72. A matter of definition-key elements identified in a discourse analysis of definitions of palliative care. Pastrana T, Junger S, Ostgathe C, Elsner F, Radbruch L, Palliat Med 2008 22 3 222 232 10.1177/0269216308089803 18477716 (Pubitemid 351795926)
73. Research design in end-of-life research: state of science. George LK, Gerontologist 2002 42 3 86 98 12415138 (Pubitemid 35231161)
74. Health care proxy grief symptoms before the death of nursing home residents with advanced dementia. Kiely DK, Prigerson H, Mitchell SL, Am J Geriatr Psychiatry 2008 16 664 673 10.1097/JGP.0b013e3181784143 18669945
75. The impact of anticipatory grief on caregivers of persons with Alzheimer's disease. Walker RJ, Pomeroy EC, Home Health Care Serv Q 1997 16 55 76 10173444
76. When the profession becomes personal: dementia care practitioners as family caregivers. Manthorpe J, Samsi K, Rapaport J, Int Psychogeriatrics 2012 24 6 902 910 10.1017/S1041610211002882