Context, mechanisms and outcomes in end of life care for people with advanced dementia

BMC Palliative Care

Volumn 15, Issue 1, 2016, Pages

  Kupeli, Nuriye ^a   Leavey, Gerard ^b   Moore, Kirsten ^a   Harrington, Jane ^a   Lord, Kathryn ^a   King, Michael ^a   Nazareth, Irwin ^a   Sampson, Elizabeth L ^a,c   Jones, Louise ^a  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b UNIVERSITY OF ULSTER   (United Kingdom)

^c ST ANN S HOSPITAL   (United Kingdom)

Author keywords

Care homes; Dementia; Palliative care; Qualitative research; Realist framework

Indexed keywords

ARTICLE; DEMENTIA; DOCTOR PATIENT RELATION; FAMILY ATTITUDE; FEMALE; HEALTH CARE PERSONNEL; HEALTH CARE PLANNING; HEALTH CARE SYSTEM; HEALTH SERVICE; HUMAN; MALE; MENTAL HEALTH SERVICE; NURSING HOME; PATIENT CARE; PRACTICE GUIDELINE; PSYCHOSOCIAL CARE; QUALITATIVE ANALYSIS; QUALITY OF LIFE; SPIRITUAL CARE; STAFF TRAINING; TERMINAL CARE; THEMATIC ANALYSIS; UNITED KINGDOM; ADULT; ADVANCE CARE PLANNING; ENGLAND; MIDDLE AGED; MORTALITY; NURSING; OUTCOME ASSESSMENT; PATIENT CARE PLANNING; PROCEDURES; QUALITATIVE RESEARCH; STANDARDS; STATISTICS AND NUMERICAL DATA;

ADULT; ADVANCE CARE PLANNING; DEMENTIA; FEMALE; HUMANS; LONDON; MALE; MIDDLE AGED; NURSING HOMES; PATIENT CARE PLANNING; PATIENT OUTCOME ASSESSMENT; QUALITATIVE RESEARCH; TERMINAL CARE;

EID: 84960477252     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/s12904-016-0103-x     Document Type: Article

References (48)

1. Sleeman KE et al. Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001-2010. BMC Neurol. 2014;14:59.
2. Reyniers T., et al. International Variation in Place of Death of Older People Who Died From Dementia in 14 European and non-European Countries. J Am Med Dir Assoc, 2014. [Epub ahead of print]
3. Poblador-Plou B et al. Comorbidity of dementia: a cross-sectional study of primary care older patients. BMC Psychiatry. 2014;14(1):1-8.
4. Corbett A et al. The importance of pain management in older people with dementia. Br Med Bull. 2014;111(1):139-48.
5. Mitchell SL et al. The Clinical Course of Advanced Dementia. N Engl J Med. 2009;361(16):1529-38.
6. Escobar Pinzon LC et al. Dying with dementia: symptom burden, quality of care, and place of death. Dtsch Arztebl Int. 2013;110(12):195-202.
7. Sampson EL et al. Pain, agitation, and behavioural problems in people with dementia admitted to general hospital wards: a longitudinal cohort study. Pain. 2015;156(4):675-83.
8. Brorson H et al. Pain Relief at the End of Life: Nurses' Experiences Regarding End-of-Life Pain Relief in Patients with Dementia. Pain Manag Nurs. 2014;15(1):315-23.
9. Toot S et al. Causes of Hospital Admission for People With Dementia: A Systematic Review and Meta-Analysis. J Am Med Dir Assoc. 2013;14(7):463-70.
10. Afram B et al. Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries. J Am Med Dir Assoc. 2014;15(2):108-16.
11. Gaugler JE et al. Predictors of nursing home admission for persons with dementia. Med Care. 2009;47(2):191-8.
12. Davies N et al. Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences. Health Soc Care Community. 2014;22(4):386-94.
13. Gage H et al. Integrated working between residential care homes and primary care: a survey of care homes in England. BMC Geriatr. 2012;12:71.
14. Goddard C et al. Providing end-of-life care in care homes for older people: a qualitative study of the views of care home staff and community nurses. J Appl Gerontol. 2013;32(1):76-95.
15. Kupeli N et al. What are the barriers to integration of palliative care for those at the advanced stages of dementia living in care homes in the UK? Dementia: Health Care Professional Perspective; 2015.
16. Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004;164(3):321-6.
17. Toscani F et al. Treatments and prescriptions in advanced dementia patients residing in long-term care institutions and at home. J Palliat Med. 2013;16(1):31-7.
18. Jones L., et al. CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study. BMJ Open 2012, 2(6).doi: 10.1136/bmjopen-2012-002265
19. Jones L., et al. Development of a model for integrated care at the end of life in advanced dementia: a whole systems UK wide approach. Palliative Medicine, In Press.
20. Chang E et al. Palliative care for end-stage dementia: A discussion of the implications for education of health care professionals. Nurse Educ Today. 2005;25(4):326-32.
21. Goodman C et al. End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry. 2010;25(4):329-37.
22. Mitchell SL et al. The advanced dementia prognostic tool: a risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manage. 2010;40(5):639-51.
23. Mitchell SL et al. Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010;304(17):1929-35.
24. Alzheimer's Society. Outcomes of the James Lind Alliance Dementia priority setting partnership. 2013 [cited 2015 1st October]; Available from: https://www.alzheimers.org.uk/site/scripts/download-info.php?fileID=2226.
25. Hope T. Ethical issues and dementia: the Nuffield Report. Clin Ethics. 2010;5(1):3-6.
26. van der Steen JT et al. 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. 2014;28(3):197-209.
27. Pawson R, Tilley N. Realistic Evaluation. London: Sage Publications; 1997.
28. Elliott M et al. A protocol for an exploratory phase I mixed-methods study of enhanced integrated care for care home residents with advanced dementia: the Compassion Intervention. BMJ Open. 2014;4(6):e005661.
29. Pawson R. Evidence-based policy: The promise ofrealist synthesis'. Evaluation. 2002;8(3):340-58.
30. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
31. Dening KH et al. Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study. BMJ Support Palliat Care. 2012;2(2):103-7.
32. Forbes DA, Neufeld A. Looming dementia care crisis: Canada needs an integrated model of continuing care now! Can J Nurs Res. 2008;40(1):9-16.
33. van der Steen JT. Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis. 2010;22(1):37.
34. Seymour JE, Kumar A, Froggatt K. Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England. Palliat Med. 2011;25(2):125-38.
35. Murray S.A. How can palliative care deal with overzealous treatment? 2009, in press
36. Barclay S et al. Living in uncertain times: trajectories to death in residential care homes. Br J Gen Pract. 2014;64(626):e576-83.
37. Casey D et al. Dying well: factors that influence the provision of good end-of-life care for older people in acute and long-stay care settings in Ireland. J Clin Nurs. 2011;20(13-14):1824-33.
38. Potter JM, Fernando R, Humpel N. Development and evaluation of the REACH (recognise end of life and care holistically) out in dementia toolkit. Australas J Ageing. 2013;32(4):241-6.
39. Arcand M et al. Educating nursing home staff about the progression of dementia and the comfort care option: impact on family satisfaction with end-of-life care. J Am Med Dir Assoc. 2009;10(1):50-5.
40. Comondore VR et al. Quality of care in for-profit and not-for-profit nursing homes: systematic review and meta-analysis. BMJ. 2009;339:b2732.
41. Xu D, Kane RL, Shamliyan TA. Effect of nursing home characteristics on residents' quality of life: A systematic review. Arch Gerontol Geriatr. 2013;57(2):127-42.
42. Michel J-P et al. End-of-life care of persons with dementia. J Gerontol Ser A Biol Med Sci. 2002;57(10):M640-4.
43. Watson J, Hockley J, Dewar B. Barriers to implementing an integrated care pathway for the last days of life in nursing homes. Int J Palliat Nurs. 2006;12(5):234-40.
44. World Health Organization. National cancer control programmes: policies and managerial guidelines. 2nd Eds. Geneva: World Health Organization; 2002.
45. Froggatt KA, Poole K, Hoult L. The provision of palliative care in nursing homes and residential care homes: a survey of clinical nurse specialist work. Palliat Med. 2002;16(6):481-7.
46. Pawson R, Manzano-Santaella A. A realist diagnostic workshop. Evaluation. 2012;18(2):176-91.
47. Alzheimer's Society. Dementia 2014: Opportunity for change. 2014 [cited 2015 1st October]; Available from: http://www.alzheimers.org.uk/site/scripts/download-info.php?fileID=2317.
48. Kerrison SH, Pollock AM. Regulating nursing homes: Caring for older people in the private sector in England. BMJ. 2001;323(7312):566.