Supporting positive interactions within dementia relationships of care

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Galvin, Mary
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University College Cork
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This research is concerned with the potential for supporting positive interactions within dementia relationships of care experienced in the home. Beyond the definitions, diagnosis, and stages of dementia there is always a relationship of care (be that formal or informal care) and between and within each of these relationships there is difference. Cognisant of the diversity of experiences and relationships that characterise living with dementia, this thesis makes a number of different yet related attempts to understand and support a variety of caring relationships, where diversity has been little supported or encouraged. The research is carried out in two stages. The first involves a long-term ethnographic engagement with four people with dementia and their caregivers. Narratives of experience are collected through a mix of semi-structured interviews, observation, field-notes, and cultural probes and explored using narrative analysis. Three themes are identified in the narrative analysis: navigating privacy and place in contexts; reaching out of the home and in to the community; and old selves, new selves, future selves – looking to the present to support communication. The second stage involves an experience-centred design inquiry that responds to the ethnographic study by using a simple photo-based narrative tool, Digital Story Cubes, as a resource for exploring the reconfiguration of communication within relationships of care. Again, narrative inquiry is used to identify three themes: changing perspectives and position within relationships of care; sharing; and prototyping: design and researcher. Contributions and recommendations are made in respect of the role of the researcher, HCI, and dementia care. It advocates relationship-centred care as an approach to support the power, citizenship, and network of relationships of not only the person with dementia but also their caregiver. It also questions the active and at times vulnerable role of the design researcher in the research process and how this role will impact the unfolding of future design projects in the area of dementia. While offering a design intervention as a means of reconfiguring communication within relationships it also raises questions around the potential negative effects of prioritising a design intervention over dialogue as well as also questioning the legacy of such pieces of work and what can sustain positive interactions within dementia relationships of care after the completion of the research project.
Dementia , Psychology , HCI , Ethnography , Narrative inquiry , Experience-centred design
Galvin, M. 2016. Supporting positive interactions within dementia relationships of care. PhD Thesis, University College Cork.
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