End of life care interventions for people with dementia in care homes: Addressing uncertainty within a framework for service delivery and evaluation Knowledge, education and training

BMC Palliative Care

Volumn 14, Issue 1, 2015, Pages

  Goodman, Claire ^a   Froggatt, Katherine ^b   Amador, Sarah ^c   Mathie, Elspeth ^a   Mayrhofer, Andrea ^a  

^a UNIVERSITY OF HERTFORDSHIRE   (United Kingdom)

^b LANCASTER UNIVERSITY   (United Kingdom)

^c UNIVERSITY COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

AGE; ARTICLE; COMORBIDITY; DEMENTIA; DOCTOR PATIENT RELATION; DYING; END OF LIFE CARE; EVALUATION STUDY; FAMILY RELATION; GENERAL PRACTITIONER; HEALTH CARE MANPOWER; HOME MENTAL HEALTH CARE; HUMAN; LIFE EXPECTANCY; LONG TERM CARE; NURSE PATIENT RELATIONSHIP; PALLIATIVE THERAPY; PATIENT CARE; PROGNOSIS; QUALITY OF LIFE; RELATIONAL UNCERTAINTY; SERVICE UNCERTAINTY; SOCIAL INTERACTION; TREATMENT UNCERTAINTY; UNCERTAINTY; NURSING HOME; PROCEDURES; QUESTIONNAIRE; TERMINAL CARE; UTILIZATION;

DEMENTIA; HUMANS; SKILLED NURSING FACILITIES; SURVEYS AND QUESTIONNAIRES; TERMINAL CARE; UNCERTAINTY;

EID: 84941772146     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/s12904-015-0040-0     Document Type: Article

References (34)

1. Knapp M, Prince M, Albanese E, Banerjee S, Dhanasiri S, Fernandez J, et al. Dementia UK: A report to the Alzheimer's Society on the prevalence and economic cost of dementia in the UK produced by King's College London and London School of Economics. London: Alzheimer's Society; 2007.
2. Gordon AL, Franklin M, Bradshaw L, Logan P, Elliott R, Gladman JR. Health status of UK care home residents: a cohort study. Age Ageing. 2013;43(1):97-103.
3. Stewart R, Hotopf M, Dewey M, Ballard C, Bisla J, Calem M, et al. Current prevalence of dementia, depression and behavioural problems in the older adult care home sector: the South East London Care Home Survey. Age Ageing. 2014;43(4):562-7.
4. Bowman C, Meyer J. Formative care: defining the purpose and clinical practice of care for the frail. J R Soc Med. 2014;107(3):95-8.
5. van der Steen JT. Dying with Dementia: What We Know after More than a Decade of Research. J Alzheimers Disssss. 2010;22(1):37-55.
6. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, 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. 2013;28(3):197-209. 10.1177/0269216313493685.
7. Kennedy C, Brooks-Young P, Brunton Gray C, Larkin P, Connolly M, Wilde-Larsson B, et al. Diagnosing dying: an integrative literature review. BMJ Support Palliat Care. 2014;4(3):263-70.
8. Matthews FE, Arthur A, Barnes LE, Bond J, Jagger C, Robinson L, et al. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet. 2013;382(9902):1405-12.
9. Froggatt KA, Reitinger E, Heimerl K, Hockley J, Brazil K. Palliative Care in Long-Term Care Settings for Older People: EAPC Taskforce 2010-2012. In: European Association of Palliative Care. 2013.
10. Goodman C, Amador S, Elmore N, Machen I, Mathie E. Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes. Int J Nurs Stud. 2013;50(12):1639-47.
11. Oishi A, Murtagh FE. The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals. Palliat Med. 2014;28(9):1081-98. 10.1177/0269216314531999.
12. Fisher M, Ridley S. Uncertainty in end-of-life care and shared decision making. Crit Care Resusc. 2012;14(1):81-7.
13. Davies N, Maio L, Paap JR, Mariani E, Jaspers B, Sommerbakk R, et al. Quality palliative care for cancer and dementia in five European countries: some common challenges. Aging Mental Health. 2014;18(4):400-10.
14. Birch D, Draper J. A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nursss. 2008;17(9):1144-63.
15. Amador S, Goodman C, King D, Ng YT, Elmore N, Mathie E, et al. Exploring resource use and associated costs in end of life care for older people with dementia in residential care homes. Int J Geriatr Psychiatry. 2013;29(7):758-66.
16. Livingston G, Pitfield C, Morris J, Manela M, Lewis-Holmes E, Jacobs H. Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes. Int J Geriatr Psychiatry. 2012;27(6):643-50.
17. Mathie E, Goodman C, Crang C, Froggatt K, Iliffe S, Manthorpe J, et al. An uncertain future: the unchanging views of care home residents about living and dying. Palliat Med. 2012;26(5):734-43.
18. Handley MG, Goodman C, Froggatt K, Mathie E. et al. Living and dying: Responsibility for End of Life care in care homes without on-site nursing provision, a prospective study. Health Soc Care Community. 2013 (in press).
19. Barclay S, Froggatt K, Crang C, Mathie E, Handley M, Iliffe S, et al. Living in uncertain times: trajectories to death in residential care homes. Br J Gen Pract. 2014;64(626):e576-83.
20. Goodman C, Baron NL, Machen I, Stevenson E, Evans C, Davies SL, et al. Culture, consent, costs and care homes: enabling older people with dementia to participate in research. Aging Ment Health. 2011;15(4):475-81.
21. Evans C. The analysis of experiences and representations of older people's health in care homes to develop primary care nursing practice. London: Kings College London; 2008.
22. Goodman C, Evans C, Wilcock J, Froggatt K, Drennan V, Sampson E, 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.
23. Parsons C, Haydock J, Mathie E, Baron N, Machen I, Stevenson E, et al. Sedative load of medications prescribed for older people with dementia in care homes. BMC Geriatric. 2011;11:56.
24. Parsons C, Johnston S, Mathie E, Baron N, Machen I, Amador S, et al. Potentially Inappropriate Prescribing in Older People with Dementia in Care Homes: A Retrospective Analysis. Drugs Aging. 2012;29(2):143-55.
25. Amador S, Goodman C, King D, Machen I, Elmore N, Mathie E, et al. Emergency ambulance service involvement with residential care homes in the support of older people with dementia: an observational study. BMC Geriatric. 2014;14(1):95.
26. Goodman C, Mayrhofer A, Handley M, Smeeton NC, Amador S, Davies S. Evaluation of the End of Life Care Train the Trainer Education Model Unpublished report Hatfield University of Hertfordshire. 2014. http://www.herts.ac.uk/-data/assets/pdf-file/0014/60017/Evaluation-endoflife-TTT-education-model.pdf.
27. Ziebland S, Hunt K. Using secondary analysis of qualitative data of patient experiences of health care to inform health services research and policy. J Health Serv Res Policy. 2014;19(3):177-82.
28. DH. Review of Liverpool Care Pathway for dying patients Independent Report "More Care less pathway a review of the Liverpool pathway". Department of Health. More care, less pathway: a review of the Liverpool care pathway. Jul 2013. https://www.gov.uk/government/uploads/system/uploads/attachment-data/file/212450/Liverpool-Care-Pathway.pdf.
29. Parry R, Seymour J, Whittaker B, Bird L, Cox K. Rapid evidence review: pathways focused on the dying phase in end of life care and their key components. Nottingham: University of Nottingham and the NHS End of Life Care Programme; 2013. p. 5.
30. Sachs GA, Shega JW, Cox Hayley D. Barriers to excellent end of life care for patients with dementia. J Gen Intern Med. 2004;19(10):1057-63.
31. Dening T, Milne A. Mental health and care homes: Oxford University Press; 2011.
32. van Soest-Poortvliet MC, van der Steen JT, Zimmerman S, Cohen LW, Munn J, Achterberg WP, et al. Measuring the quality of dying and quality of care when dying in long-term care settings: a qualitative content analysis of available instruments. J Pain Symptom Manage. 2011;42(6):852-63.
33. Evans CJ, Harding R, Higginson IJ. 'Best practice' in developing and evaluating palliative and end-of-life care services: A meta-synthesis of research methods for the MORECare project. Palliat Med. 2013;27(10):885-98. 1177/0269216312467489.
34. Higginson IJ, Evans CJ, Grande G, Preston N, Morgan M, McCrone P, et al. Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med. 2013;11(1):111.