Loitering in a liminal space : enactments of differing realities of hallucinations in dementia
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Date
01/07/2014Author
Taylor, Barbara Elizabeth
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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.