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BMC Palliative Care
Published in: BMC Palliative Care 1/2016

Open Access 01-12-2016 | Research article

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

Authors: Nuriye Kupeli, Gerard Leavey, Kirsten Moore, Jane Harrington, Kathryn Lord, Michael King, Irwin Nazareth, Elizabeth L. Sampson, Louise Jones

Published in: BMC Palliative Care | Issue 1/2016

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Abstract

Background

The majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers.

Method

The design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults’ services and nursing staff.

Results

Good palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required.

Conclusions

Contextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector.
Literature
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.CrossRefPubMedPubMedCentral
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.CrossRef
4.
Corbett A et al. The importance of pain management in older people with dementia. Br Med Bull. 2014;111(1):139–48.CrossRefPubMed
5.
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.CrossRefPubMedPubMedCentral
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
11.
Gaugler JE et al. Predictors of nursing home admission for persons with dementia. Med Care. 2009;47(2):191–8.CrossRefPubMed
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.CrossRefPubMed
13.
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMedPubMedCentral
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.CrossRefPubMedPubMedCentral
24.
25.
Hope T. Ethical issues and dementia: the Nuffield Report. Clin Ethics. 2010;5(1):3–6.CrossRef
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.CrossRefPubMed
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.CrossRefPubMedPubMedCentral
29.
Pawson R. Evidence-based policy: The promise ofrealist synthesis’. Evaluation. 2002;8(3):340–58.CrossRef
30.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef
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.CrossRefPubMed
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.PubMed
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.PubMed
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.CrossRefPubMedPubMedCentral
35.
Murray S.A. How can palliative care deal with overzealous treatment? 2009, in press
36.
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
40.
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.CrossRefPubMed
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.CrossRef
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.CrossRefPubMed
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.CrossRefPubMed
46.
Pawson R, Manzano-Santaella A. A realist diagnostic workshop. Evaluation. 2012;18(2):176–91.CrossRef
47.
48.
Metadata
Title
Context, mechanisms and outcomes in end of life care for people with advanced dementia
Authors
Nuriye Kupeli
Gerard Leavey
Kirsten Moore
Jane Harrington
Kathryn Lord
Michael King
Irwin Nazareth
Elizabeth L. Sampson
Louise Jones
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2016
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-016-0103-x

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