'I'm a rambler, I'm a gambler, I'm a long way from home': exploring participation through music and digital design in dementia care

People with dementia (PWD) living in care are a population commonly termed as ‘vulnerable’, and whose challenging life situations are often described in the literature as being a part of a ‘burden’, both on the part of their families and larger society. The difficult circumstances faced by PWD are often compounded by moving into care, where they can face loneliness, social isolation, and a lack of meaningful experiences. With many millions of people living with the condition worldwide, as well as a lack of available and effective pharmaceutical treatment for dementia, there have been increasing calls for the ‘problem’ of dementia to be addressed through psycho-social pathways, with technological design implicated as one of these. However, the vast majority of extant design research in dementia has focused on alleviating the cognitive problems that come with the condition, leading to a lack of design research that explores experiential aspects of living with dementia. This thesis presents the findings and insights from a three year long, in-depth participatory project carried out in three dementia care settings in the south of Ireland that explored how people with dementia can participate within creative (music) sessions, and how this participation can be folded into an ongoing design process to result in a rich and multi-authored account of experience, as well as in meaningful design processes and objects. This thesis contributes to design research, in particular to experience-centred design approaches, and positions these contributions within the context of their potential when practiced in communities of care. The work outlines an ethnographically-informed design approach which, in this thesis, responds to human potential and creative imagination, and which is realised in an analytic account of an unfolding design process carried out with communities of people with dementia living in care. In particular, the approach describes the potential for design and design processes to be creative and expressive for a population often denied a sense of agency through aspects of living in care settings, as well as through a medicalization of the condition of dementia that persists in the literature surrounding designing for and with this population. The thesis outlines how ethnographic (and later, participatory action research) approaches contribute opportunities for very different community members (e.g., PWD, researchers, artists, carers, nurses – and more) to come together in a process of co-inquiry that utilizes multiple forms of creative imagination and communication. In this thesis, this was achieved through an unfolding process of learning concerning the potential of embodied communication in dementia care and design. The work positions embodied communication as a fruitful way to access and understand the lived experience of participants whose verbal abilities may have waned, but whose ability for communication and expression is still present in alternative ways (such as eye contact, touch, movement, vocalisation, informal chat, gesture, song, and dance), and evidence this with data from my fieldwork. The thesis includes an account of the development and introduction of a design object (SwaytheBand), the creative (and embodied) use of which helps to make visible certain social and communicative processes by participants, and which itself leads to a novel account of creative, spontaneous participation in dementia. Ultimately, the thesis provides a rich analytic account of ways in which people with dementia can communicate and participate within design processes in ways that have not yet been articulated in the design literature surrounding design in dementia, and, positioning itself within this larger literature, indicates a number of ways in which a body of research concerned with the experience and participation of people with dementia may proceed

A blended approach to design education through clinical immersions and industry partnerships in design for healthcare

Contemporary design education seeks to prepare students for the workplace through studio-based learning that replicates real world practice. Design problems in the workplace have become increasingly complex and one example of this is within the area of design for Healthcare, which requires multidisciplinary collaboration between various stakeholders to build knowledge in order to create new products, services systems and spaces. The complexity of these roles creates challenges for design educators in preparing students for the work place. This paper presents a hybrid approach to address this challenge by presenting a real-world approach to design education. This entails a bottom-up approach to facilitate design research in a clinical setting to gather rich insights and needs of the clinical setting along with a top-down industry collaboration with sponsored briefs to guide students through the requirements of developing solutions in a heavily regulated field. The paper outlines examples of this process and how it was achieved in a blended model that was predominantly online in response to the changed environment caused by the COVID-19 pandemic. The advantages of this model are threefold,  students gain deep knowledge and skills through collaborating with a variety of stakeholders within health care, they gain the opportunity to validate their designs through testing and feedback with these partners and lastly students develop the connections to create opportunities for further partnerships and employment

Self Harmony: Rethinking Hackathons to Design and Critique Digital Technologies for Those Affected by Self-Harm

In this paper we explore the opportunities, challenges and best practices around designing technologies for those affected by self-harm. Our work contributes to a growing HCI literature on mental health and wellbeing, as well as understandings of how to imbue appropriate value-sensitivity within the digital design process in these contexts. The first phase of our study was centred upon a hackathon during which teams of designers were asked to conceptualise and prototype digital products or services for those affected by self-harm. We discuss how value-sensitive actions and activities, including engagements with those with lived experiences of self-harm, were used to scaffold the conventional hackathon format in such a challenging context. Our approach was then extended through a series of critical engagements with clinicians and charity workers who provided appraisal of the prototypes and designs. Through analysis of these engagements we expose a number of design challenges for future HCI work that considers self-harm; moreover we offer insight into the role of stakeholder critiques in extending and rethinking hackathons as a design method in sensitive contexts

The value of experience-centred design approaches in dementia research contexts

Experience-Centred Design (ECD) has been applied in numerous HCI projects to call attention to the particular and dialogical nature of people's experiences with technology. In this paper, we report on ECD within the context of publicly-funded, long-stay residential dementia care, where the approach helped to highlight aspects of participants' felt experience, and informed sensitive and meaningful design responses. This study contributes an extended understanding of the quality of experience and the means of making sense in dementia, as well as unpicking the potential of ECD to support enriched experience and contextual meaning-making for people with dementia. Finally, we delineate what it is about Experience-Centred Design that differentiates the approach from other often-used approaches in designing in dementia contexts: 1) explorative thinking, 2) working within 'cuttings-out of time and space', 3) careful yet expressive methodology and documentation, and 4) working together to imagine futures. We end with considerations of how the contributions of this research may extend to other experience-centred projects in challenging settings

PDC Places: Landscapes of participatory design in Ireland

Ireland has many established participatory design experts and enthusiasts, and a rich landscape of practice. PDC Place Ireland comprises of a series of panels, exhibitions, and workshops, and will bring together academics, research students and practitioners to explore current practices in participatory design enacted in Ireland and internationally. These events will map participatory research across a number of contemporary contexts including public health, architecture, policymaking, and disability

Handing over the keys: a qualitative study of the experience of automation in driving

This article presents a qualitative driving simulator study designed to understand the experience of giving up control to automated processes in semiautonomous driving systems. The study employed an experience prototyping methodology, with 12 drivers (4 female) completing 2 sessions in a high-fidelity driving simulator. Condition A simulated a normally functioning car, while Condition B simulated a semiautonomous system that monitors driver behavior and takes evasive action when danger is detected. The simulator experience was used to ground wider discussion of automation and the experience of driving, which was explored through a semistructured interview. Results identify design challenges for autonomous driving systems; the loss of user agency and confidence, and handling the change between manual and automated control. Opportunities were identified; in augmenting rather than removing human abilities, and in providing new learning opportunities for drivers

Printer Pals: experience-centered design to support agency for people with dementia

Whereas there have been significant improvements in the quality of care provided for people with dementia, limited attention to the importance for people with dementia being enabled to make positive social contributions within care home contexts can restrict their sense of agency. In this paper we describe the design and deployment of 'Printer Pals' a receipt-based print media device, which encourages social contribution and agency within a care home environment. The design followed a two-year ethnography, from which the need for highlighting participation and supporting agency for residents within the care home became clear. The residents use of Printer Pals mediated participation in a number of different ways, such as engaging with the technology itself, offering shared experiences and participating in co-constructive and meaningful ways, each of which is discussed. We conclude with a series of design consideration to support agentic and caring interactions through inclusive design practices

Exploring Participants’ Representations and Shifting Sensitivities in a Hackathon for Dementia

Recent HCI research has addressed emerging approaches for public engagement. One such public-facing method which has gained popularity over the previous decade have been open design events, or hackathons. In this paper we report on DemVR, a hackathon event that invited designers, technologists, and students of these disciplines to design Virtual Reality (VR) environments for people with dementia and their care partners. While our event gained reasonable attraction from designers and developers, this paper unpacks the challenges in representing and involving people with dementia in these events, which had multiple knock-on effects on participant's outputs. Our analysis presents insights into participants’ motivations, challenges participants faced when constructing their ‘absent user’, and the design features teams developed to address the social context of the user. We conclude the paper by proposing a set of commitments for collaborative design events, community building through design, and reification in design

Blueprints physical to digital: curation of media to support ongoingness

Through describing ‘Blueprints’, a series of fabric collages, we detail a method for translating physical properties of objects into digital materialities of media compilations. This method has emerged within a piece of design research seeking to develop new ways to curate digital media to support ongoingness. The project context centres on working firstly with people who have a life limiting illness, secondly people living with an early stage of dementia and thirdly people who are bereaved. Ongoingness is a theoretical construct denoting an active dialogical component of ‘continued bonds’, which is an approach within bereavement care championing practices that enable a continued sense of connection between someone bereaved and a person who has died. ‘Blueprints’ are fabric collages made from scraps of fabric symbolising digital media (in this case photographs) from 2 people – one bereaved and one now deceased. The physical qualities that result from making the fabric collages (variation in layerings, thicknesses, stitching, fraying) each map onto directions for how the corresponding digital media will be composed in a compilation, and serves as a collaborative method of curating media in new ways. The ‘Blueprints’ method enables us to research if and how physical making of things can serve as a gentle way to engage with the complexities of media curation. It considers the potential value of indirect ways of curating digital media to enable ongoing connections between people through the unexpected compilations that the method creates