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Piecing together a fragmented world: Structures to promote the understanding of people with advanced dementia
Luleå University of Technology, Department of Health Sciences, Nursing Care.ORCID iD: 0000-0003-0313-6002
2018 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Föra samman fragment till en helhet : Strukturer för att öka förståelsen för personer med avancerad demens (Swedish)
Abstract [en]

Understanding people with dementia whose verbal ability has been impaired is a complex and challenging task, even for professional nursing staff. The aim of this PhD thesis was to explore structures that may promote the understanding of people with advanced dementia living in nursing homes. It focusses specifically on (I) the clinical reasoning employed by assistant nurses when utilizing the NPI-NH (Neuropsychiatric Inventory Nursing Home version) as a tool to assess frequency and severity of BPSD (behavioural and psychological symptoms in dementia, i.e. problematic behaviours) in people with advanced dementia, (II) whether a sensor measuring electrodermal activity (EDA) can improve the identification of agitation in individuals with dementia, (III) how an EDA sensor impacts assistant nurses’ structured assessments of problematic behaviours amongst people with dementia and their choices of care interventions, and (IV) how Martha Nussbaum’s approach to human capabilities can apply to dignity in the lives of people with advanced dementia living in nursing homes. Study I used a method of discourse analysis that focussed on clinical reasoning utilized by assistant nurses when assessing problematic behaviours. In study II, a nonexperimental and correlational observation of the relationship between a sensor measuring EDA and assistant nurses’ structured observations of agitation in people with advanced dementia was applied. Study III used both quantitative and qualitative approaches; data were collected during structured assessments of problematic behaviours conducted by assistant nurses, as well as by focus group interviews with assistant nurses. Study IV took an ethnographic approach with participatory observations that were analyzed with a recursive analysis using a theoretical framework for the conditions necessary for a dignified human life. The structure of the NPI-NH provided a supportive framework that encouraged assistant nurses to discuss and broaden their understanding of the person with dementia (I). The EDA sensor provided continuous information regardless of staff presence and the potential to identify EDA prior to observing these behaviours (II, III), which supported the understanding of the person and when to introduce timely interventions to prevent the onset of problematic behaviours (III). The structure of Nussbaum’s approach to human capabilities illuminated that people with advanced dementia were at risk of living a life in which their opportunities for human capabilities were limited, and hence, the possibility to live a dignified life (IV). An overview of the findings in this thesis indicates that the studied structures were used to piece together fragments of information to create a comprehensive understanding of the needs of the person with dementia. For the structures to support the understanding of the person with dementia, it was crucial that nursing staff were present, attentive and engaged in each person’s situation in order for them to figure out how to piece together and integrate the structures into the overall understanding of the person and, based on that, formulate caring actions in daily life that are meaningful from the perspective of the person with advanced dementia.

Place, publisher, year, edition, pages
Luleå: Luleå University of Technology, 2018.
Series
Doctoral thesis / Luleå University of Technology 1 jan 1997 → …, ISSN 1402-1544
Keywords [en]
dementia, nursing home, electrodermal activity, capability approach, clinical reasoning, assessment, behaviour
National Category
Nursing
Research subject
Nursing
Identifiers
URN: urn:nbn:se:ltu:diva-70847ISBN: 978-91-7790-199-0 (print)ISBN: 978-91-7790-200-3 (electronic)OAI: oai:DiVA.org:ltu-70847DiVA, id: diva2:1247633
Public defence
2018-10-26, Deltasalen, D770, Luleå, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2018-09-13 Created: 2018-09-12 Last updated: 2018-09-27Bibliographically approved
List of papers
1. Assessing BPSD with the support of the NPI-NH: a discourse analysis of clinical reasoning
Open this publication in new window or tab >>Assessing BPSD with the support of the NPI-NH: a discourse analysis of clinical reasoning
2018 (English)In: International psychogeriatrics, ISSN 1041-6102, E-ISSN 1741-203X, Vol. 30, no 4, p. 581-589Article in journal (Refereed) Published
Abstract [en]

The ability of nursing staff to assess and evaluate behavioral and psychological symptoms of dementia (BPSD) to determine when intervention is needed is essential. In order to assist with the assessment process, the current use of the Neuropsychiatric Inventory Nursing Home version (NPI-NH) is internationally accepted. Even though the NPI-NH is thoroughly validated and has several advantages, there are also various challenges when implementing this system in practice. Thus, the aim of this study was to explore clinical reasoning employed by assistant nurses when utilizing the NPI-NH as a tool to assess frequency and severity of BPSD in individuals with advanced dementia.

Twenty structured assessment sessions in which assistant nurses used the NPI-NH were audio recorded and analyzed with a discourse analysis focusing on the activities in the communication.

Four categories were identified to convey assistant nurses' clinical reasoning when assessing and evaluating BPSD using the NPI-NH: considering deteriorations in ability and awareness, incorporating individual and contextual factors, overcoming variations in behaviors and ambiguous formulations in the instrument, and sense-making interactions with colleagues.

The NPI-NH served as a supportive frame and structure for the clinical reasoning performed during the assessment. The clinical reasoning employed by assistant nurses became a way to reach a consensual and broader understanding of the individual with dementia, with the support of NPI-NH as an important framework.

Place, publisher, year, edition, pages
Cambridge University Press, 2018
National Category
Nursing
Research subject
Nursing
Identifiers
urn:nbn:se:ltu:diva-65964 (URN)10.1017/S1041610217002009 (DOI)000431404300014 ()28965503 (PubMedID)
Note

Validerad;2018;Nivå 2;2018-05-17 (andbra)

Available from: 2017-10-04 Created: 2017-10-04 Last updated: 2018-09-12Bibliographically approved
2. Measuring Electrodermal Activity to Improve the Identification of Agitation in Individuals with Dementia
Open this publication in new window or tab >>Measuring Electrodermal Activity to Improve the Identification of Agitation in Individuals with Dementia
2017 (English)In: Dementia and geriatric cognitive disorders extra, E-ISSN 1664-5464, Vol. 7, no 3, p. 430-439Article in journal (Refereed) Published
Abstract [en]

Background: Understanding and interpreting the complexity of agitation in people with dementia is challenging. Objective: To explore whether a sensor measuring electrodermal activity (EDA) can improve the identification of agitation in individuals with dementia. Methods: Nine individuals with dementia wore a sensor that measured EDA. During the same time, assistant nurses annotated the observed behavior of the person with dementia. A binary logistic regression model was applied to assess the relationship between the sensor and the assistant nurses’ structured observations of agitation. Results: The sensor values correlated with the assistant nurses’ observations both at the time of the observation and 1 and 2 h prior to the observation. Conclusion: A sensor measuring EDA can support early detection of agitation in persons with dementia

Place, publisher, year, edition, pages
S. Karger, 2017
National Category
Nursing Probability Theory and Statistics
Research subject
Nursing; Matemathical Statistics
Identifiers
urn:nbn:se:ltu:diva-67055 (URN)10.1159/000484890 (DOI)29430245 (PubMedID)
Note

Validerad;2018;Nivå 2;2017-12-19 (andbra)

Available from: 2017-12-19 Created: 2017-12-19 Last updated: 2018-09-12Bibliographically approved
3. The impact of using measurements of electrodermal activity in the assessment of problematic behaviour in dementia
Open this publication in new window or tab >>The impact of using measurements of electrodermal activity in the assessment of problematic behaviour in dementia
Show others...
2018 (English)In: Dementia and geriatric cognitive disorders extra, E-ISSN 1664-5464, Vol. 8, no 3, p. 333-347Article in journal (Refereed) Published
Abstract [en]

Background: A major and complex challenge when trying to support individuals with dementia is meeting the needs of those who experience changes in behaviour and mood. Aim: To explore how a sensor measuring electrodermal activity (EDA) impacts assistant nurses' structured assessments of problematic behaviours amongst people with dementia and their choices of care interventions. Methods: Fourteen individuals with dementia wore a sensor that measured EDA. The information from the sensor was presented to assistant nurses during structured assessments of problematic behaviours. The evaluation process included scorings with the instrument NPI-NH (Neuropsychiatric Inventory-Nursing Home version), the care interventions suggested by assistant nurses to decrease problematic behaviours, and the assistant nurses' experiences obtained by focus group interviews. Results: The information from the sensor measuring EDA was perceived to make behavioural patterns more visual and clear, which enhanced assistant nurses' understanding of time-related patterns of behaviours. In turn, this enhancement facilitated timely care interventions to prevent the patterns and decrease the levels of problematic behaviour. Conclusion: With the addition of information from the sensor, nursing staff could target causes and triggers in a better way, making care interventions more specific and directed towards certain times throughout the day to prevent patterns of problematic behaviours.

Place, publisher, year, edition, pages
Basel: S. Karger, 2018
National Category
Health Sciences Nursing
Research subject
Nursing
Identifiers
urn:nbn:se:ltu:diva-70846 (URN)10.1159/000493339 (DOI)000465207700004 ()30386370 (PubMedID)2-s2.0-85054876403 (Scopus ID)
Note

Validerad;2018;Nivå 2;2018-11-07 (johcin) 

Available from: 2018-09-12 Created: 2018-09-12 Last updated: 2019-05-02Bibliographically approved
4. Human capabilities in advanced dementia: Nussbaum's approach
Open this publication in new window or tab >>Human capabilities in advanced dementia: Nussbaum's approach
2018 (English)In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 13, no 2, article id 12178Article in journal (Refereed) Published
Abstract [en]

Aims and objectives

To explore how Martha Nussbaum's approach to human capabilities can apply to dignity in the lives of people with advanced dementia living in nursing homes.

Background

Challenges experienced when supporting people with advanced dementia who express problematic behaviours include understanding their needs and ensuring a dignified life for them.

Design and methods

Data were gathered using an ethnographic approach based on participatory observation. Nussbaum's capability approach was then used as a framework for the analysis. Four women diagnosed with advanced dementia who also expressed problematic behaviours were recruited from a nursing home in Northern Sweden. The data collection was performed during 2015.

Findings

Individuals with advanced dementia had difficulties in participating in the planning of their lives and achieving the human capability of practical reasoning. They were also at risk of being placed outside the social group, thus hindering them from attaining the human capability of affiliation. A dignified life for individuals with advanced dementia requires nursing staff to be present and to provide adapted support to ensure that the individual can actually pursue human capabilities.

Conclusion

Creating opportunities for the human capabilities of practical reasoning and affiliation is essential as they permeate all other human capabilities. For these individuals, it was crucial not only to create opportunities for human capabilities but also to attend to their expressions and needs and to guide and steer them towards a dignified life.

Implications for Practice

The normative structure of the capability approach described by Nussbaum can ensure that nursing staffs move beyond fulfilling patients’ basic needs to consider other capabilities vital for a dignified life.

Place, publisher, year, edition, pages
John Wiley & Sons, 2018
National Category
Nursing
Research subject
Nursing
Identifiers
urn:nbn:se:ltu:diva-66049 (URN)10.1111/opn.12178 (DOI)000434118100002 ()28990351 (PubMedID)2-s2.0-85047906757 (Scopus ID)
Note

Validerad;2018;Nivå 2;2018-06-04 (svasva)

Available from: 2017-10-11 Created: 2017-10-11 Last updated: 2018-09-12Bibliographically approved

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Melander, Catharina

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