Palliative care for people with dementia living at home: A systematic review of interventions

Palliative Medicine

Volumn 33, Issue 7, 2019, Pages 726-742

  Miranda, Rose ^a   Bunn, Frances ^b   Lynch, Jennifer ^b   Van den Block, Lieve ^a   Goodman, Claire ^b  

^a VRIJE UNIVERSITEIT BRUSSEL   (Belgium)

^b UNIVERSITY OF HERTFORDSHIRE   (United Kingdom)

Author keywords

dementia; health care; home care services; Palliative care; primary; terminal care

Indexed keywords

COST EFFECTIVENESS ANALYSIS; DEMENTIA; ELECTRONIC MEDICAL RECORD; FOLLOW UP; FUNCTIONAL STATUS; HOME CARE; HUMAN; MULTIDISCIPLINARY TEAM; PALLIATIVE THERAPY; PERCEPTION; PHASE 1 CLINICAL TRIAL (TOPIC); PHASE 2 CLINICAL TRIAL (TOPIC); PRIMARY HEALTH CARE; PUBLIC HEALTH; QUALITY CONTROL; QUALITY OF LIFE; QUESTIONNAIRE; REVIEW; SELECTION BIAS; SOCIAL NETWORK; SOCIAL WORKER; SYSTEMATIC REVIEW; TERMINAL CARE; PROCEDURES;

DEMENTIA; HOME CARE SERVICES; HUMANS; PALLIATIVE CARE;

EID: 85065491833     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216319847092     Document Type: Review

References (52)

1. Lunney JR, Lynn J, Foley DJ. Patterns of functional decline at the end of life. JAMA 2003; 289(18): 2387–2392.
2. Van Der Steen JT. Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis 2010; 22(1): 37–55.
3. Prince M, Comas-Herrera A, Knapp M. World Alzheimer report 2016 improving healthcare for people living with dementia: coverage, quality and costs now and in the future. London: Alzheimer’s Disease International, 2016, pp. 1–140.
4. Gomes B, Calanzani N, Gysels M. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013; 12: 7.
5. Ewbank L, Thompson J, McKenna H., NHS hospital bed numbers: past, present, future, 2017, https://www.kingsfund.org.uk/publications/nhs-hospital-bed-numbers
6. Samus QM, Black BS, Bovenkamp D. Home is where the future is: the BrightFocus Foundation consensus panel on dementia care. Alzheimers Dement 2018; 14(1):104–114.
7. Fox S, FitzGerald C, Harrison Dening K. Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliat Care 2017; 17(1): 9.
8. Sampson EL., Palliative care for people with dementia. Br Med Bull 2010; 96(1): 159–174.
9. Hughes JC., Promoting palliative care in dementia. Lancet Neurol 2010; 9(1): 25–27.
10. Van den Block L. The need for integrating palliative care in ageing and dementia policies. Eur J Public Health 2014; 24(5): 705–706.
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. Murphy E, Froggatt K, Connolly S. Palliative care interventions in advanced dementia. Cochrane Database Syst Rev 2016; 12: CD011513.
13. Singer AE, Goebel JR, Kim YS. Populations and interventions for palliative and end-of-life care: a systematic review. J Palliat Med 2016; 19(9): 995–1008.
14. Gomes B, Calanzani N, Curiale V. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Libr 2013(6): 93–94.
15. Joint Programme – Neurodegenerative Disease Research. Palliative and end-of-life care research in neurodegenerative diseases. A report of the JPND Action Group, 2017, http://www.neurodegenerationresearch.eu/tag/action-group-report/
16. OECD. Care needed: improving the lives of people with dementia. In series: OECD Health Policy Studies. Paris, 2018, https://read.oecd-ilibrary.org/social-issues-migration-health/care-needed_9789264085107-en#page1
17. Hum AY, Wu HY, Ali NB. The dignity in advanced dementia (diadem) study: developing an integrated geriatric palliative homecare program. Prog Palliat Care 2018; 26(2): 1–8.
18. Effective Public Health Practice Project. Quality assessment tool for quantitative studies. Hamilton, ON, Canada: Effective Public Health Practice Project, 1998, https://merst.ca/ephpp/
19. Brian Cassel J, Kerr KM, McClish DK. Cassel 2016: effect of a home-based palliative care program on healthcare use and costs. J Am Geriatr Soc 2016; 64(11): 2288–2295.
20. Holley APH, Gorawara-Bhat R, Dale W. Holley 2009: palliative access through care at home: experiences with an Urban, geriatric home palliative care program. J Am Geriatr Soc 2009; 57(10): 1925–1931.
21. Nakanishi M, Endo K, Hirooka K. Psychosocial behaviour management programme for home-dwelling people with dementia: a cluster-randomized controlled trial. Int J Geriatr Psychiatry 2018; 33(3): 495–503.
22. Fabris F, Molaschi M, Aimonino N. Home care for demented subjects: new models of care and home-care allowance. Arch Gerontol Geriatr Suppl 2004; 38(Suppl. 9): 155–162.
23. Tibaldi V, Aimonino N, Ponzetto M. A randomized controlled trial of a home hospital intervention for frail elderly demented patients: behavioral disturbances and caregiver’s stress. Arch Gerontol Geriatr Suppl 2004; 38(Suppl. 9): 431–436.
24. Reisberg B, Shao Y, Golomb J. Comprehensive, individualized, person-centered management of community-residing persons with moderate-to-severe Alzheimer disease: a randomized controlled trial. Dement Geriatr Cogn Disord 2017; 43(1–2): 100–117.
25. Wilson K, Bachman SS., House calls: the impact of home-based care for older adults with Alzheimer’s and dementia. Soc Work Health Care 2015; 54(6): 547–558.
26. Baker R, Bell S, Baker E. A randomized controlled trial of the effects of Multi-Sensory Stimulation (MSS) for people with dementia. Br J Clin Psychol 2001; 40(Pt. 1): 81–96.
27. Aimonino N, Molaschi M, Salerno D. The home hospitalization of frail elderly patients with advanced dementia. Arch Gerontol Geriatr Suppl 2001; 7: 19–23.
28. Penders YWH, Albers G, Deliens L. End-of-life care for people dying with dementia in general practice in Belgium, Italy and Spain: a cross-sectional, retrospective study. Geriatr Gerontol Int 2017; 17(10): 1667–1676.
29. Meeussen K, Van den Block L, Echteld M. Older people dying with dementia: a nationwide study. Int Psychogeriatr 2012; 24(10): 1581–1591.
30. Miranda R, Penders YWH, Smets T. Quality of primary palliative care for older people with mild and severe dementia: an international mortality follow-back study using quality indicators. Age Ageing 2018; 47(6): 824–833.
31. Trivedi DP, Braun A, Dickinson A. Managing behavioural and psychological symptoms in community dwelling older people with dementia: 1. Dementia (London). Epub ahead of print 1 January 2018. DOI: 10.1177/1471301218762851.
32. Corbett A, Husebo B, Malcangio M. Assessment and treatment of pain in people with dementia. Nat Rev Neurol 2012; 8(5): 264–274.
33. Malara A, De Biase GA, Bettarini F. Pain assessment in elderly with behavioral and psychological symptoms of dementia. J Alzheimers Dis 2016; 50(4): 1217–1225.
34. Eska K, Graessel E, Donath C. Predictors of institutionalization of dementia patients in mild and moderate stages: a 4-year prospective analysis. Dement Geriatr Cogn Dis Extra 2013; 3(1): 426–445.
35. Luppa M, Luck T, Brahler E. Prediction of institutionalisation in dementia: a systematic review. Dement Geriatr Cogn Disord 2008; 26(1): 65–78.
36. Mittelman MS, Haley WE, Clay OJ. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology 2006; 67(9): 1592–1599.
37. Mogan C, Lloyd-Williams M, HarrisonDening K. The facilitators and challenges of dying at home with dementia: a narrative synthesis. Palliat Med 2018; 32(6): 1042–1054.
38. Erel M, Marcus E-L, Dekeyser-Ganz F., Barriers to palliative care for advanced dementia: a scoping review. Ann Palliat Med 2017; 6(4): 365–379.
39. World Health Organization (WHO). WHO definition of palliative care, http://www.who.int/cancer/palliative/definition/en/
40. Edvardsson D, Winblad B, Sandman PO., Person-centred care of people with severe Alzheimer’s disease: current status and ways forward. Lancet Neurol 2008; 7(4): 362–367.
41. Batsch NL, Mittelman MS., World Alzheimer report 2012: overcoming the stigma of dementia. Alzheimer’s Dis Int 2012: 1–80.
42. Mitchell SL, Teno JM, Miller SC. A national study of the location of death for older persons with dementia. J Am Geriatr Soc 2005; 53(2): 299–305.
43. Dempsey L, Dowling M, Larkin P. The unmet palliative care needs of those dying with dementia. Int J Palliat Nurs 2015; 21(3): 126–133.
44. Paque K, Vander Stichele R, Elseviers M. Barriers and enablers to deprescribing in people with a life-limiting disease: a systematic review. Palliat Med 2019; 33: 37–48.
45. Harding AJE, Morbey H, Ahmed F. Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions. Trials 2018; 19(1): 247.
46. Morbey H, Harding AJE, Swarbrick C. Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development. Trials 2019; 20(1): 12–10.
47. COMET initiative, 2019, http://www.comet-initiative.org/
48. Bouca-Machado R, Rosario M, Alarcao J. Clinical trials in palliative care: a systematic review of their methodological characteristics and of the quality of their reporting. BMC Palliat Care 2017; 16(1): 10–12.
49. Piggott M, McGee H, Feuer D., Has CONSORT improved the reporting of randomized controlled trials in the palliative care literature? A systematic review. Palliat Med 2004; 18(1): 32–38.
50. World Health Organization (WHO). Making choices in health: WHO guide to cost-effectiveness analysis (Glob Program Evid Heal Policy). Geneva: WHO, 2003, p. 71. http://www.who.int/choice/publications/p_2003_generalised_cea.pdf
51. Moore GF, Audrey S, Barker M. Process evaluation of complex interventions: Medical Research Council guidance. BMJ 2015; 350: h1258.
52. Nakanishi M, Hirooka K, Imai Y. Dementia care competence among care professionals and reduced challenging behavior of home-dwelling persons with dementia: a pre- and post-intervention data analysis. J Alzheimers Dis 2018; 64(2): 515–523.