The facilitators and challenges of dying at home with dementia: A narrative synthesis

Palliative Medicine

Volumn 32, Issue 6, 2018, Pages 1042-1054

  Mogan, Caroline ^a   Lloyd Williams, Mari ^a   Harrison Dening, Karen ^a,b   Dowrick, Christopher ^a  

^a UNIVERSITY OF LIVERPOOL   (United Kingdom)

^b DEMENTIA UK   (United Kingdom)

Author keywords

compassionate communities; Dementia; end of life; home care; palliative care

Indexed keywords

AGITATION; ALZHEIMER DISEASE; ARTICLE; AWARENESS; CAREGIVER; DATA ANALYSIS; DEMENTIA; DEPRESSION; DYING; DYSPHAGIA; GENERAL PRACTITIONER; HEALTH PROGRAM; HOME CARE; HUMAN; INCONTINENCE; NURSING CARE; PALLIATIVE THERAPY; PRACTICE GUIDELINE; PSYCHIATRIC EMERGENCY SERVICE; QUALITATIVE RESEARCH; QUALITY CONTROL; QUESTIONNAIRE; RESPIRATORY TRACT DISEASE; SYSTEMATIC REVIEW; TERMINAL CARE; EMPATHY; TERMINALLY ILL PATIENT; VERBAL COMMUNICATION;

DEMENTIA; EMPATHY; HOME CARE SERVICES; HUMANS; NARRATION; TERMINAL CARE; TERMINALLY ILL;

EID: 85047295751     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216318760442     Document Type: Article

References (68)

1. Office for National Statistics (ONS). Deaths registered in England and Wales (series DR). London: ONS, 2015.
2. Prince M, Wimo AG, Guerchet M. World Alzheimer report 2015: the global impact of dementia: an analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International, 2015.
3. Gomes B, Calanzani N, Gysels M. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013; 12(7): 1–28.
4. Gomes B, Higginson I, Calanzani N. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol 2012; 23(8): 2006–2015.
5. Wahid AS, Sayma M, Jamshaid S. Barriers and facilitators influencing death at home: a meta-ethnography. Palliat Med 2017; 32: 314–328.
6. Milberg A, Strang P, Carlsson M. Advanced palliative home care: next-of-kin’s perspective. J Palliat Med 2003; 6(5): 749–756.
7. Gysels M, Johnston B, Bausewein C. What influences the place of care and death in people with advanced dementia? Eur J Palliat Care 2015; 22(2): 58–63.
8. Sleeman KE, Ho YK, Verne J. 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.
9. Reyniers T, Deliens L, Roeline Pasman H. 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 2015; 16(2): 165–171.
10. National Institute for Health Care Excellence (NICE). Dementia: supporting people with dementia and their carers in health and social care. London: NICE, 2006.
11. van der Steen JT, Radbruch L, Hertogh CM. 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.
12. Department of Health. End of life care strategy. London: Department of Health, 2008.
13. Higginson IJ, Saramento VP, Calanzani N. Dying at home – is it better: a narrative appraisal of the state of the science. Palliat Med 2013; 27(10): 918–924.
14. Lloyd-Williams M, Mogan C, Dening KH., Identifying palliative care needs in people with dementia. Curr Opin Support Palliat Care 2017; 11(4): 328–333.
15. Goodman C, Evans C, Wilcock J. End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry 2010; 25(4): 329–337.
16. Sachs G, Shega J, Cox-Hayley D., Barriers to excellent end of life care for patients with dementia. J Gen Intern Med 2004; 19(10): 1057–1063.
17. Alzheimer’s Society. Dementia 2012: a national challenge. London: Alzheimer’s Society, 2012.
18. Morrison SR, Siu AL., Survival in end-stage dementia following acute illness. JAMA 2000; 284(1): 47–52.
19. Robinson L, Hughes J, Daley S. End of life care and dementia. Rev Clin Gerontol 2005; 15(2): 135–148.
20. Sampson EL, Gould V, Lee D. Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age Ageing 2006; 35(2): 187–189.
21. Mitchell SL, Teno JM, Kiely DK. The clinical course of advanced dementia. N Engl J Med 2009; 361(16): 1529–1538.
22. Dening KH, Greenish W, Jones L. Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study. BMJ Support Palliat Care 2012; 2(2): 103–107.
23. Gozalo P, Teno JM, Mitchell SL. End of life transitions among nursing home residents with cognitive issues. N Engl J Med 2011; 365(13): 1212–1221.
24. Lethin C, Leino-Kilpi H, Roe B. Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study. BMC Geriatr 2016; 16: 32.
25. Peacock SC., The experience of providing end of life care to a relative with advanced dementia: an integrative literature review. Palliat Support Care 2013; 11(2): 155–168.
26. Shanley C, Russell C, Middleton H. Living through end-stage dementia: the experiences and expressed needs of family carers. Dementia 2011; 10(3): 325–340.
27. Hallberg IR, Leino-Kilpi H, Meyer G. Dementia care in eight European countries: developing a mapping system to explore systems. J Nurs Scholarsh 2013; 45(4): 412–424.
28. Davies N, Maio L, Rait G. Quality end-of-life care for dementia: what have family carers told us so far? A narrative synthesis. Palliat Med 2014; 28(7): 919–930.
29. Crowther J, Wilson KC, Horton S. Palliative care for dementia – time to think again? QJM: Int J Med 2013; 106(6): 491–494.
30. Crowther J, Wilson KC, Horton S. Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia. J R Soc Med 2013; 106(12): 492–497.
31. Muders P, Zahrt-Omar CA, Bussmann S. Support for families of patients dying with dementia: a qualitative analysis of bereaved family members’ experiences and suggestions. Palliat Support Care 2015; 13(3): 435–442.
32. Hill SR, Mason H, Poole M. What is important at the end of life for people with dementia? The views of people with dementia and their carers. Int J Geriatr Psychiatry 2017; 32(9): 1037–1045.
33. Moore KJ, Davis S, Gola A. Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods. BMC Geriatr 2017; 17: 135.
34. Lloyd-Williams M, Abba K, Crowther J., Supportive and palliative care for patients with chronic mental illness including dementia. Curr Opin Support Palliat Care 2014; 8(3): 303–307.
35. Centre for Reviews and Dissemination. Guidance for undertaking reviews in healthcare. York: University of York, 2009.
36. Popay J, Roberts H, Sowden A. Guidance on the conduct of narrative synthesis in systematic reviews: a product from the ESRC methods programme. Lancaster: Lancaster University, 2006.
37. Moher D, Liberati A, Tetzlaff J. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Int J Surg 2010; 8(5): 336–441.
38. Hawker S, Payne S, Kerr C. Appraising the evidence: reviewing disparate data systematically. Qual Health Res 2002; 12(9): 1284–1299.
39. Thomas J, Harden A., Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008; 8: 45.
40. Volicer L, Hurley AC, Blasi ZV., Characteristics of dementia end-of-life care across care settings. Am J Hosp Palliat Care 2003; 20(3): 191–200.
41. Hirakawa Y, Masuda Y, Kuzuya M. End-of-life experience of demented elderly patients at home: findings from DEATH project. Psychogeriatrics 2006; 6(2): 60–67.
42. Shega JW, Hougham GW, Stocking CB. Patients dying with dementia: experience at the end of life and impact of hospice care. J Pain Symptom Manage 2008; 35(5): 499–507.
43. Gabbard JL, McNabney M., End-of-life care for dementia patients in the Program of All-inclusive Care for the Elderly (PACE): a quality of care assessment. Rem Open Access 2016; 1: 1016.
44. Henderson J., Palliative care in dementia: caring at home until the end. J Dement Care 2007; 22–23.
45. Treloar A, Crugel M, Adamis D., Palliative and end of life care of dementia at home is feasible and rewarding. Dementia 2009; 8(3): 335–347.
46. Glass A., Family caregiving and the site of care: four narratives about end of life care for individuals with dementia. J Soc Work End Life Palliat Care 2016; 12(1–2): 23–46.
47. Lloyd-Williams M, Dening KH, Crowther J., Dying with dementia-how can we improve the care and support of patients and their families. Ann Palliat Med 2017; 6(4): 306–309.
48. Rosenberg JP, Horsfall D, Leonard R. Informal care networks’ views of palliative care services: help or hindrance? Death Stud 2017; 5: 1–9.
49. Iliffe S, Davies NV, Vernooij-Dassen M. Modelling the landscape of palliative care for people with dementia: a European mixed methods study. BMC Palliat Care 2013; 12(1): 30.
50. Finaly IG, Higginson IJ, Goodwin DM., Palliative care in hospital, hospice, at home: results from a systematic review. Ann Oncol 2002; 13(4): 257–264.
51. Higginson IJ, Finaly IG, Goodwin DM. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage 2003; 25(2): 150–168.
52. Gomes B, Higginson IJ., Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 2006; 332: 515–521.
53. Carroll T, Quill T. Use of generalist and specialist palliative care for older people. In: Van den Block L, Albers G, Martins-Pereira S. (eds) Palliative care for older people: a public health perspective. Oxford: Oxford University Press, 2015, pp. 181–192.
54. Sampson EL., Palliative care for people with dementia. Brit Med Bull 2010; 96: 159–174.
55. Sampson EL, Burns A, Richards M., Improving end-of-life care for people with dementia. Br J Psychiatry 2011; 199(5): 357–359.
56. Davies N, Rait G, Maio L. Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: a qualitative study. Palliative Med 2017; 31(8): 726–733.
57. van der Steen JT, Radbruch L, de Boer ME. Achieving consensus and controversy around applicability of palliative care to dementia. Int Psychogeriatr 2016; 28(1): 133–145.
58. Dening KH, Jones L, Sampson EL., Preferences for end-of-life care: a nominal group study of people with dementia and their family carers. Palliat Med 2013; 27(5): 409–417.
59. Dening KH, Jones L, Sampson EL., Advance care planning for people with dementia: a review. Int Psychogeriatr 2011; 23(10): 1535–1551.
60. Morris SM, King C, Turner M. Family carers providing support to a person dying in the home setting: a narrative literature review. Palliat Med 2015; 29(6): 487–495.
61. Abel J, Bowra J, Walter T. Compassionate community networks: supporting home dying. BMJ Support Palliat Care 2011; 1(2): 129–133.
62. Kellehear A., Compassionate cities: public health and end of life care. London: Routledge, 2005.
63. Abel J, Kellehear A., Palliative care reimagined: a needed shift. BMJ Support Palliat Care 2016; 6: 21–26.
64. Paul S, Sallnow L., Public health approaches to end-of-life care in the UK: an online survey of palliative care services. BMJ Support Palliat Care 2013; 3: 196–199.
65. McLoughlin K, Rhatigan J, McGilloway S. INSPIRE (Investigating social and practical supports at the end of life): pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness. BMC Palliat Care 2015; 14(1): 65.
66. Horsfall D, Noonan K, Leonard R., Bringing our dying home: how caring for someone at the end of life builds social capital and develops compassionate communities. Health Sociol Rev 2012; 21(4): 373–382.
67. Kellehear A., Compassionate communities: end-of-life care as everyone’s responsibility. QJM 2013; 106: 1071–1075.
68. Humphries R, Hall P, Charles A. Social care for older people: home truths. London: The King’s Fund, 2016.