An experience-centred design led examination of the struggle for recognition in dementia care

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Foley, Sarah
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University College Cork
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The experience of advanced dementia has been largely excluded from design work in Human-Computer Interaction (HCI), as the experience itself is viewed as ‘unreachable’ in terms of design engagement. This thesis aims to examine the experience of living with dementia in the care home context, with a view to implementing methods of Experience-Centred Design (ECD) to examine the relational and agentic abilities of people with dementia, particularly in advanced dementia. In order to examine the experience of advanced dementia and understand the political and social implications of inclusion of people with advanced dementia in design, this thesis draws on the social theory of recognition, a theory which emphasises the need for mutual engagement as a means of developing and sustaining a self-identity. Used as the basis of a design framework, this theory suggests a series of sensibilities for design in this context, which are presented in chapter 2. This framework informs the empirical design work presented in chapters 4, 5 and 6 to examine the needs for reciprocity through design in dementia care, paying particular attention to the ways of engaging with the experience of advanced dementia. The initial ethnography, presented in chapter 4, focuses on the nature of communication, care and participation with people with advanced dementia, with a view to informing recognition-based design work. Findings suggest ways to further support moments of recognition in care and design, such as embodied communication, challenges in recognising the needs of people with advanced dementia and reconfiguring the role of people with advanced dementia in design. Informed by the findings of the ethnography, and with a view to increasing moments of recognition through design, intergenerational design work with student volunteers and residents in care is presented in chapter 5. Discussed are two case studies; Life Story Box and History Club. In these design projects, students worked with residents to explore their personhood and engaged in the co-design of artefacts which represented the individual and collective life story of the people with dementia. Findings suggest how best to support students and people with dementia in the design process, as well as some of the ethical implications of supporting co-design in this context. The final study culminated in the design and evaluation of ‘Printer Pals’, a receipt-based media producing technology to increase access to media and encourage social engagement in the care home setting. This iterative design process involved prototype development, evaluation and implementation in collaboration with researchers from Open Lab, Newcastle University. Findings discuss the use of design processes to support agency in care homes, and the role of technology in creating opportunities for positive social engagement and cohesion. This empirical design work, informed by the theory of recognition and methods of ECD, proposes an approach to designing with and for people with advanced dementia that supports and engages in their agentic social presence. Design work in this context presents an opportunity to position the person with advanced dementia as active in the dialogical process of meaning-making, as well as their own care practices. Reconfiguring the role of people with advanced dementia in relational and social processes, requires careful re-visiting of cultural and social notions of agency and mutuality, and how they have failed to consider the abilities of people with advanced dementia. Design has a central role to play in supporting these abilities, encouraging creative and meaningful care practices in order to honour the needs and rights of the person with dementia to shape a meaningful and connected lived experience.
Dementia , Care , Human-computer interaction , Experience-centred design
Foley, S. 2019. An experience-centred design led examination of the struggle for recognition in dementia care. PhD Thesis, University College Cork.