Memory Loss and Scenic Experience: An Arts Based Investigation

In our research, two groups of people living with memory loss due to mid-stage dementia were invited to view a film installation, centred on the experience of a woman with a brain lesion and dense amnesia. The groups, recruited from day-care and support settings, were living at home. One included informal care-givers. After the film, each participated in a visual matrix: A group-based method of eliciting image-led and affective associations in response to aesthetic stimuli to support shared and distributed memory. We hypothesised that the associative process of the visual matrix would support meaningful engagement for participants with dementia. We discuss the participation and self-reflection facilitated through the method in terms of social scaffolding, attending to differences between the groups, presence of care-givers and visual matrix setting. We consider the conditions in which scenic experience, replete with embodied memory traces is expressed in a visual matrix by people with impaired recall, enabling them to engage with a complex artwork. This provides insight into how the embodied, subjective experience of people living with memory loss can be communicated. Implications for enrichment programmes, social activities and communication in group care settings are considered

Exploring how persons with dementia and care partners collaboratively appropriate information and communication technologies

Persons with dementia and their care partners have been found to adapt their own technological arrangements using commercially-available information and communication technologies (ICTs). Yet, little is known about these processes of technology appropriation and how care practices are impacted. Adopting a relational perspective of care, we longitudinally examined how four family care networks appropriated a new commercial ICT service into their existing technological arrangements and care practices. Cross-case analysis interpreted collaborative appropriation to encompass two interrelated processes of creating and adapting technological practices and negotiating and augmenting care relationships. Four driving forces were also proposed: motivating meanings that actors ascribe to the technology and its use; the learnability of the technology and actors’ resourcefulness; the establishment of responsive and cooperative care practices; and the qualities of empathy and shared power in care relationships. The importance of technological literacy, learning, meaning-making, and the nature and quality of care relationships are discussed. Future work is urged to employ longitudinal and naturalistic approaches, and focus design efforts on promoting synergistic care relationships and care practices

Self-Tracking by People Living with Multiple Sclerosis: Supporting Experiences of Agency in a Chronic Neurological Condition

Multiple sclerosis is a complex neurological condition. It disrupts the central nervous system leading to an individual range of physical, cognitive, and mental impairments. Research has focused on the tracking of primary disease indicators and disability outcome measures to assess the progression of this condition. However, there is little knowledge on how technologies could support the needs of people with multiple sclerosis (MS) in self-tracking their health and wellbeing. Drawing on qualitative research and design methods this thesis provides two contributions. Firstly, it improves understanding of self-tracking in MS self-management. Interview participants reported regaining a sense of control over MS through intertwining individual self-care practices with different self-tracking tools, including paper notebooks and fitness wearables. They associated experiences of control with their agency to document their health in holistic ways, involving symptom monitoring and life journaling. However, participants criticised that self-tracking apps can impede their capacities, in particular when the user experience is focused on predefined health indicators and the optimisation of health behaviour. These findings highlight the need to support people’s individual self-care intentions and agentive capacities through customisable self- tracking approaches. Secondly, this thesis contributes the design of Trackly, a technology probe that supports people in defining and colouring pictorial trackers, such as body shapes. We identify benefits and challenges of customisable and pictorial self-tracking through a field study of Trackly in MS self-management. Having been able to support their individual self-care intentions with Trackly, participants reported a spectrum of interrelated experiences of agency, including ownership, identity, awareness, mindfulness, and control. Overall, this thesis provides a qualitative account and design perspective that demonstrate how adapting self-tracking technologies to individual care needs supported experiences of agency. These findings are particularly relevant to the design of technologies aimed at leveraging personally meaningful self-care and quality of life

Homes for Life & Other Stories The Use and Evaluation of Design Fiction as a Means to Understand Sensitive Settings: a Case Study of Exploring Technologies for Dementia Care

Design fictions are used in HCI to position emerging technologies in fictional future worlds, through which the complexities of our relationships with technologies can be represented, explored and experienced. They promise to stimulate discussions about sensitive topics, such as the future of technology-enabled care, a complex area with contrasting emotional, social and practical views and wishes. However, the term design fiction is currently associated with a wide range of uses, and artefacts. It is also linked to contrasting philosophies and frameworks, which are often not made explicit, as I show in an initial survey with practitioners. This makes it difficult to identify what makes a design fiction good or effective for different purposes. This thesis aims to answer the research question: How can design fiction be used and evaluated in understanding sensitive settings? I turn to the Constructive Design Research framework and adapt it to classify how design fiction is used in HCI. I outline how design fiction can be used in the showroom approach, where it is most commonly placed, but also how it can be used as a lab and field approach to gather insights into the responses to design fictions. I developed design fictions and explored how they can be used to further discussions around the use of monitoring technologies in dementia care: an area challenging to research because of ethical issues associated with deployment studies of prototype technologies. The contribution of this thesis is threefold: first, a methodological contribution into the use of design fiction in HCI and an evaluation of the Constructive Design Research framework as a means to classify research through design fiction. Second, insights into participants’ views and wishes about technology-led care in regards to dementia. Third, a design contribution of artefacts that can be used to stimulate further debate around the topic