Loitering in a liminal space : enactments of differing realities of hallucinations in dementia

Abstract

This thesis uses a narrative approach to explore how hallucinations are understood by people with dementia, their carers and community mental health nurses. The study aims to make visible the multiple enactments of realities of hallucinations as they are practiced within a community mental health setting. While existing research shows a growing body of research about experiences of dementia, the experience of hallucinations has been unexplored. Research about hallucinations has predominantly focused on epidemiology or pharmaceutical interventions. The research was conducted in one area of Scotland, using three triadic case studies comprising a person with dementia living at home, their carer and community nurse. Data were collected through conversational interviews. In this study realities are conceptualised as enacted and multiple. The study was informed by an ethic of care approach which critiques the view of people as isolated individuals. People are understood to live in relationships within which they co-construct narratives. It provided an ethical framework to research relationships and data analysis. Data were analysed using voice centred relational analysis, which uses four separate ‘listenings’ for each interview. This method identifies the multiple voices speaking and allows a high degree of reflexivity. I-poems were produced for each of the interviews and some visual illustrations were used in different ways to illustrate the analysis and allow an alternative interpretive perspective on the data. The analysis reveals that people with dementia and their carers contextualise their understanding of hallucinations into their narrative identity. They strive for continuity but also experience them as potential threats. Ambiguity and uncertainty are characteristic of the experience of hallucinations of people with dementia and carers and I suggest that liminality is a useful concept to understand this. Community nurses have multiple, and fluid understandings of hallucinations; they negotiate these different hallucinations within a situated practice enactment. Their decision to act on hallucinations does not depend on whether they relate to consensus reality, but whether they cause distress. The findings of this study highlight the complexities and ambiguities of hallucinations within dementia and shows how they are managed in practice. The theoretical perspectives of enacted realities and ethic of care, alongside creative methods enhances understanding of the ephemeral nature of hallucinations. This study adds to literature challenging the exclusion of the people with dementia from research by demonstrating that they are able to talk about their experiences of hallucinations. The study contributes to the story of hallucinations in dementia by disrupting the fixed boundaries of the dominant discourse that views hallucinations as a clear cut break with reality.