Experiences of living and dying with Lewy body dementia : A longitudinal narrative study

Bentley, Allison and Walshe, Catherine and Salifu, Yakubu (2023) Experiences of living and dying with Lewy body dementia : A longitudinal narrative study. PhD thesis, Lancaster University.

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Abstract

Background Lewy body dementia is a life-limiting condition with multiple, complex symptoms. As the condition progresses much of the caring and nursing duties fall to families. However, little is known about how people with Lewy body dementia and their families are affected by the condition. The overall aim of this thesis was to explore the experiences of people living with Lewy body dementia, and their family carers over time. An integrative systematic review of the literature was conducted. A convergent integrated design was applied to facilitate the synthesis of published research exploring the experiences of people living with Lewy body dementia and family carers. There was scarce qualitative evidence identified on the lived experience, with a predominant biomedical focus and cross-sectional designs. Methodology In order to gain unique insights into people’s experiences of living with Lewy body dementia a narrative methodology was chosen. A social constructionist approach influenced the research conducted, drawing from the psycho-social discipline and experience-centred narrative theory. The underpinning perspective was that knowledge and reality are socially produced, and humans’ understanding, and interpretations of their world occurs through stories. Method A longitudinal narrative study using three sequential interviews and life story work was completed to gain unique insights into five couples’ experiences of living with Lewy body dementia. Participants were recruited from memory clinics and the ‘Join Dementia Research’ database within the east of England. Narrative data were collected using dyadic narrative interviews with each couple over a six-month period (August 2019 – Februrary 2020). The analysis of the stories was conducted using Murray’s levels of narrative analysis in health psychology. Murray’s anaytical framework enabled stories to be analysed at the personal, interpersonal, positional, and societal level. Findings The main finding from this study was that the overarching narrative of ‘social connectedness’ was found to be important, and this continued over time. In this study, social connectedness represents a stepwise description of how a person is actively involved with others and their surroundings, leading to a sense of comfort and wellbeing. Seven stages of social connectedness were identified: maintaining social connections, developing new connections together, social disconnection, support from adult children, marital disconnection, connecting to health and social care, and emotionally separated but living together. Lack of social connectedness leads to social disconnection. Repeated losses over time resulted in difficulty in maintaining social connections giving rise to a reduced sense of agency. Loss of continence, energy, and independence, together with difficulty managing medications, significantly impacted on couples’ quality of life and ability to remain connected through all stages. Conclusion Maintaining a social life and support network was important for both people living with Lewy body dementia and family carers. The findings contribute to the methodological literature that gives voice to those living with dementia over time. They highlight how physical and personality changes, communication challenges, and behavioural difficulties, undermine established social connections. The stepwise diagrammatic representation of social connectedness provides guidance for more targeted healthcare interventions and management of Lewy body dementia.