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Interaction-Focussed Life Story Work in Semantic Dementia: A Mixed Methods Study

Kindell, Jacqueline

[Thesis]. Manchester, UK: The University of Manchester; 2015.

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Abstract

Background: Semantic dementia occurs as part of the frontotemporal dementia spectrum of conditions and presents with a progressive and striking receptive and expressive communication disorder. Studies thus far have generally concentrated on quantitative assessment of cognition and behaviour and there is a paucity of research examining conversation skills in everyday life, despite people with this condition and their family carers identifying this as the primary focus of their difficulties. There is also a gap in the literature in examining the first-hand experiences of people with semantic dementia and their family carers, in terms of how they live day to day with this condition. There is currently no evidence based advice for management of everyday communication issues in semantic dementia.Aims: This thesis used a multiple case study design to explore everyday conversation at home with five individuals with semantic dementia and their spouses and in one case study, also a daughter. Individuals ranged from early semantic dementia to the advanced stages of this condition. Each case study used an innovative combination of conversation analysis of video and audio data alongside biographical interviewing in a longitudinal design. A total of 74 home visits gathered 45 hours of interview data and 12 hours of video data. Information derived from these strands was then used to design an individually tailored intervention which focussed on the specific everyday conversation issues in each situation. This included aspects of life story work and interaction-focused therapy. Findings: A range of challenges and skills were present in the everyday conversations of these individuals with semantic dementia and their family carers. Some of this variability arose from differences in the severity of the semantic dementia across individuals in the study. However, differences were also apparent in how individuals with semantic dementia and their family carers adapted to the condition. Interaction-focussed therapy was delivered in one case study, with measureable changes in post-therapy conversations at home. Life story work was delivered in all cases using a variety of formats. Analysis of outcomes highlighted that the work could be conceptualised under various points of connection: including interactional connections, emotional connections, building new connections, practical care connections and future connections. Cognitive, psychological and social factors impacted on the life story work. Creativity in practice was important to enhance not just information exchange but foster interaction using verbal, paralinguistic and embodied behaviours. Conclusion: The study contributes to knowledge by providing in-depth understanding of the changes in everyday conversation for those living with semantic dementia and their family carers, as well as exploring interventions directly relevant for clinical practice. In this study both interaction-focussed therapy and life story work offered promise to support and enhance adaptation to changes in interaction for all concerned. Aspects of both interventions, grounded in the study data, were proposed in an exploratory model to underpin ‘interaction-focussed life story work’ in semantic dementia, i.e. life story practice with a central aim to enhance strategies for interaction in everyday life.