Agitation near the end of life with dementia: An ethnographic study of care
Autoři:
Elizabeth L. Sampson aff001; Aisling Stringer aff002; Francesca La Frenais aff002; Shanlee Higgins aff003; Mary-Jo Doyle aff003; Anne Laybourne aff002; Gill Livingston aff002; Gerard Leavey aff004
Působiště autorů:
Marie Curie Palliative Care Research Unit, Division of Psychiatry, University College London, England, London, United Kingdom
aff001; Department of Old Age Psychiatry, Division of Psychiatry, University College London, England, London, United Kingdom
aff002; Camden and Islington NHS Foundation Trust, London, England, United Kingdom
aff003; Bamford Centre for Mental Health and Wellbeing, School of Psychology, Ulster University, Coleraine, Northern Ireland, United Kingdom
aff004
Vyšlo v časopise:
PLoS ONE 14(10)
Kategorie:
Research Article
prolekare.web.journal.doi_sk:
https://doi.org/10.1371/journal.pone.0224043
Souhrn
Background and objectives
Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care.
Research design
Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as “structured observations”) of people living with dementia nearing the end of life in hospital and care homes (south-east England) and in-depth interviews with staff, conducted August 2015-March 2017.
Methods
Three data sources: 1) detailed field notes, 2) observations using a structured tool and checklist for behaviors classed as agitation and staff and institutional responses, 3) staff semi-structured qualitative interviews. We calculated the time participants were agitated and described staff responses. Data sources were analyzed separately, developed continuously and relationally during the study and synthesized where appropriate.
Results
We identified two main ‘ideal types’ of staff explanatory models for agitation: In the first, staff attribute agitated behaviors to the person’s “moral judgement”, making them prone to rejecting or punitive responses. In the second staff adopt a more “needs-based” approach in which agitation behaviors are regarded as meaningful and managed with proactive and investigative approaches. These different approaches appear to have significant consequences for the timing, frequency and quality of staff response. While these models may overlap they tend to reflect distinct organizational resources and values.
Conclusions
Care worker knowledge about agitation is not enough, and staff need organizational support to care better for people living with dementia towards end of life. Positional theory may help to explain much of the cultural-structural context that produces staff disengagement from people with dementia, offering insights on how agitation behavior is reframed by some staff as dangerous. Such behavior may be associated with low-resource institutions with minimal staff training where the personhood of staff may be neglected.
Klíčová slova:
Allied health care professionals – Nurses – Behavior – Dementia – Emotions – Elderly – Aggression – Moral philosophy
Zdroje
1. Livingston G, Barber J, Marston L, Rapaport P, Livingston D, Cousins S, et al. Prevalence of and associations with agitation in residents with dementia living in care homes: MARQUE cross-sectional study. BJPsych Open. 2017;3(4):171–8. doi: 10.1192/bjpo.bp.117.005181 28794896; PubMed Central PMCID: PMC5530006.
2. Sampson EL, White N, Lord K, Leurent B, Vickerstaff V, Scott S, et al. Pain, agitation, and behavioural problems in people with dementia admitted to general hospital wards: a longitudinal cohort study. Pain [Internet]. 2015 Apr Pmc4381983]; 156(4):[675–83 pp.].
3. Kovach CR, Noonan PE, Schlidt AM, Wells T. A model of consequences of need-driven, dementia-compromised behavior. JNursScholarsh. 2005;37(2):134–40.
4. Cummings J, Mintzer J, Brodaty H, Sano M, Banerjee S, Devanand DP, et al. Agitation in cognitive disorders: International Psychogeriatric Association provisional consensus clinical and research definition. International psychogeriatrics / IPA. 2015;27(1):7–17. Epub 2014/10/15. doi: 10.1017/S1041610214001963 25311499; PubMed Central PMCID: PMC4301197.
5. Wharton TC, Ford BK. What is known about dementia care recipient violence and aggression against caregivers? J Gerontol Soc Work. 2014;57(5):460–77. Epub 2014/03/07. doi: 10.1080/01634372.2014.882466 24593178; PubMed Central PMCID: PMC4077946.
6. Sampson EL, Candy B, Davis S, Gola AB, Harrington J, King M, et al. Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life. Palliat Med. 2018;32(3):668–81. Epub 2017/09/19. doi: 10.1177/0269216317726443 28922625; PubMed Central PMCID: PMC5987852.
7. Di Giulio P, Toscani F, Villani D, Brunelli C, Gentile S, Spadin P. Dying with advanced dementia in long-term care geriatric institutions: a retrospective study. JPalliatMed. 2008;11(7):1023–8.
8. Sleeman KE, Ho YK, Verne J, Gao W, Higginson IJ, project GUC. 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 neurology. 2014;14:59. doi: 10.1186/1471-2377-14-59 24666928; PubMed Central PMCID: PMC3987058.
9. Rapaport P, Livingston G, Hamilton O, Turner R, Stringer A, Robertson S, et al. How do care home staff understand, manage and respond to agitation in people with dementia? A qualitative study. BMJ open. 2018;8(6):e022260. Epub 2018/07/02. doi: 10.1136/bmjopen-2018-022260 29961036; PubMed Central PMCID: PMC6042579.
10. Boddington P, Featherstone K. The canary in the coal mine: Continence care for people with dementia in acute hospital wards as a crisis of dehumanization. Bioethics. 2018;32(4):251–60. Epub 2018/04/21. doi: 10.1111/bioe.12446 29676501; PubMed Central PMCID: PMC5947612.
11. Kadri A, Rapaport P, Livingston G, Cooper C, Robertson S, Higgs P. Care workers, the unacknowledged persons in person-centred care: A secondary qualitative analysis of UK care home staff interviews. PLoS One. 2018;13(7):e0200031. Epub 2018/07/10. doi: 10.1371/journal.pone.0200031 29985934; PubMed Central PMCID: PMC6037344.
12. Levin E. Noticeable problems checklist. London: National Institute for Social Work; 1989.
13. Reisberg B. Functional assessment staging (FAST). PsychopharmacolBull. 1988;24(4):653–9.
14. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. NEnglJMed. 2009;361(16):1529–38.
15. Kleinman A. Patients and healers in the context of culture: an exploration of the borderland between anthropology, medicine, and psychiatry. Berkeley: University of California Press; 1980.
16. Cohen-Mansfield J, Marx MS, Rosenthal AS. A description of agitation in a nursing home. JGerontol. 1989;44(3):M77–M84.
17. StataCorp. Stata Statistical Software: Release 14. In: C, editor. College Station, TX: StataCorp LP; 2015.
18. Miles MB, Huberman AM. Qualitative Data Analysis: An expanded sourcebook. 2nd ed. California: Sage:London & Thousand Oaks; 1994 1994.
19. Algase DL, Beck C, Kolanowski A, Whall A, Berent S, Richards K, et al. Need-driven dementia-compromised behavior: An alternative view of disruptive behavior. American Journal of Alzheimer's Disease and Other Dementias [Internet]. 1996; 11(6):[10–9 pp.].
20. Brodaty H, Draper B, Low LF. Nursing home staff attitudes towards residents with dementia: strain and satisfaction with work. J Adv Nurs. 2003;44(6):583–90. Epub 2003/12/04. doi: 10.1046/j.0309-2402.2003.02848.x 14651681.
21. Lazarus RS, Folkman S. Stress appraisal and coping. New York: Springer; 1984.
22. Pillemer K, Moore DW. Abuse of patients in nursing homes: findings from a survey of staff. Gerontologist. 1989;29(3):314–20. Epub 1989/06/01. doi: 10.1093/geront/29.3.314 2788108.
23. Paveza G, Cohen D, Eisdorfer C, Freels S, Semla T, Ashford J, et al. Severe family violence and Alzheimer's disease: Prevalence and risk factors. Gerontologist. 1992;32(4):493–7. doi: 10.1093/geront/32.4.493 1427252 Status Embase.
24. Kitwood T. The experience of dementia. Ageing and Mental Health. 1997;1(1):13–22.
25. Harré R, Moghaddam FM, Cairnie TP, Rothbart D, Sabat SR. Recent advances in positioning theory. Theory & Psychology. 2009;19(1):4. Epub 31.
26. Harré R. Positioning Theory. Self–Care and Dependent–Care Nursing 2008;16(1):4.
27. Stevens M, Biggs S, Dixon J, Tinker A, Manthorpe J. Interactional perspectives on the mistreatment of older and vulnerable people in long-term care settings. Br J Sociol. 2013;64(2):267–86. Epub 2013/05/30. doi: 10.1111/1468-4446.12017 23713559.
28. Harré R, Moghaddam FM. The self and others: Positioning individuals and groups in personal, political, and cultural contexts. Westport, CT: Praeger; 2003.
29. Sabat SR. Global conflict resolution through positioning analysis. In: Moghaddam FM, Harré R, Lee N, editors. New York: Springer; 2008. p. 65–78.
30. Mulhall A. In the field: notes on observation in qualitative research. J Adv Nurs. 2003;41(3):306–13. Epub 2003/02/13. doi: 10.1046/j.1365-2648.2003.02514.x 12581118.
31. Porock D, Clissett P, Harwood RH, Gladman JR. Disruption, control and coping: responses of and to the person with dementia in hospital. Ageing Soc. 2015;35(1):37–63. doi: 10.1017/S0144686X13000561 25878366; PubMed Central PMCID: PMC4301214.
32. Clissett P, Porock D, Harwood RH, Gladman JR. The challenges of achieving person-centred care in acute hospitals: a qualitative study of people with dementia and their families. Int J Nurs Stud. 2013;50(11):1495–503. doi: 10.1016/j.ijnurstu.2013.03.001 23548170.
33. Huynh T, Alderson M, Thompson M. Emotional labour underlying caring: an evolutionary concept analysis. J Adv Nurs. 2008;64(2):195–208. Epub 2008/11/08. doi: 10.1111/j.1365-2648.2008.04780.x 18990101.
34. Digby R, Lee S, Williams A. The experience of people with dementia and nurses in hospital: an integrative review. J Clin Nurs. 2017;26(9–10):1152–71. Epub 2016/06/21. doi: 10.1111/jocn.13429 27322590.
35. Moyle W, Olorenshaw R, Wallis M, Borbasi S. Best practice for the management of older people with dementia in the acute care setting: a review of the literature. Int J Older People Nurs. 2008;3(2):121–30. doi: 10.1111/j.1748-3743.2008.00114.x 20925901.
36. Fossey J, Masson S, Stafford J, Lawrence V, Corbett A, Ballard C. The disconnect between evidence and practice: a systematic review of person-centred interventions and training manuals for care home staff working with people with dementia. Int J Geriatr Psychiatry. 2014;29(8):797–807. Epub 2014/02/19. doi: 10.1002/gps.4072 24535885.
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