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Agitation near the end of life with dementia: An ethnographic study of care

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...

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Autores principales: Sampson, Elizabeth L., Stringer, Aisling, La Frenais, Francesca, Higgins, Shanlee, Doyle, Mary-Jo, Laybourne, Anne, Livingston, Gill, Leavey, Gerard
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6808497/
https://www.ncbi.nlm.nih.gov/pubmed/31644549
http://dx.doi.org/10.1371/journal.pone.0224043
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author Sampson, Elizabeth L.
Stringer, Aisling
La Frenais, Francesca
Higgins, Shanlee
Doyle, Mary-Jo
Laybourne, Anne
Livingston, Gill
Leavey, Gerard
author_facet Sampson, Elizabeth L.
Stringer, Aisling
La Frenais, Francesca
Higgins, Shanlee
Doyle, Mary-Jo
Laybourne, Anne
Livingston, Gill
Leavey, Gerard
author_sort Sampson, Elizabeth L.
collection PubMed
description 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.
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spelling pubmed-68084972019-11-02 Agitation near the end of life with dementia: An ethnographic study of care Sampson, Elizabeth L. Stringer, Aisling La Frenais, Francesca Higgins, Shanlee Doyle, Mary-Jo Laybourne, Anne Livingston, Gill Leavey, Gerard PLoS One Research Article 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. Public Library of Science 2019-10-23 /pmc/articles/PMC6808497/ /pubmed/31644549 http://dx.doi.org/10.1371/journal.pone.0224043 Text en © 2019 Sampson et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Sampson, Elizabeth L.
Stringer, Aisling
La Frenais, Francesca
Higgins, Shanlee
Doyle, Mary-Jo
Laybourne, Anne
Livingston, Gill
Leavey, Gerard
Agitation near the end of life with dementia: An ethnographic study of care
title Agitation near the end of life with dementia: An ethnographic study of care
title_full Agitation near the end of life with dementia: An ethnographic study of care
title_fullStr Agitation near the end of life with dementia: An ethnographic study of care
title_full_unstemmed Agitation near the end of life with dementia: An ethnographic study of care
title_short Agitation near the end of life with dementia: An ethnographic study of care
title_sort agitation near the end of life with dementia: an ethnographic study of care
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6808497/
https://www.ncbi.nlm.nih.gov/pubmed/31644549
http://dx.doi.org/10.1371/journal.pone.0224043
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