Piecing together a fragmented world : Structures to promote the understanding of people with advanced dementia

Abstract: 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.