Ticket to Talk: Supporting Conversation between Young People and People with Dementia through Digital Media

We explore the role of digital media in supporting intergenerational interactions between people with dementia and young people. Though meaningful social interaction is integral to quality of life in dementia, initiating conversation with a person with dementia can be challenging, especially for younger people who may lack knowledge of someone’s life history. This can be further compounded without a nuanced understanding of the nature of dementia, along with an unfamiliarity in leading and maintaining conversation. We designed a mobile application - Ticket to Talk - to support intergenerational interactions by encouraging young people to collect media relevant to individuals with dementia to use in conversations with people with dementia. We evaluated Ticket to Talk through trials with two families, a care home, and groups of older people. We highlight difficulties in using technologies such as this as a conversational tool, the value of digital media in supporting intergenerational interactions, and the potential to positively shape people with dementia’s agency in social settings

Enriching everyday lived experiences in dementia care

Research in HCI is increasingly investigating the role of technology in supporting meaningful and social activities to enhance the lived experiences of people with dementia. However, to further enrich the daily experiences in care, more insight is needed into how technology can directly promote social participation and pleasurable experiences in everyday care situations. This paper discusses the deployment of VITA and SAM: two research products that address the social and emotional needs of residents in day-to-day dementia care. We report how both products offered aesthetic and sensory enrichment, created new experiences in the everyday, and were integrated into the care environment. Furthermore, we identify implications for design to provide: 1) aesthetics in care, 2) authentic experiences, 3) reinforcing everyday life, and 4) community-driven use in practice. We contribute to existing research by demonstrating how technology for dementia care can transcend instrumental use and culminate in warm-felt everyday experiences

Supporting stimulation needs in dementia care through wall-sized displays

Beside reminiscing, the increasing cognitive decline in dementia can also be addressed through sensory stimulation allowing the immediate, nonverbal engagement with the world through one’s senses. Much HCI work has prioritized cognitive stimulation for reminiscing or personhood often on small screens, while less research has explored sensory stimulation like the one enabled by large displays. We describe a year-long deployment in a residential care home of a wall-sized display, and explored its domestication through 24 contextual interviews. Findings indicate strong engagement and attachment to the display which has inspired four psychosocial interventions using online generic content. We discuss the value of these findings for personhood through residents’ exercise of choices, the tension between generic/personal content and its public/private use, the importance of participatory research approach to domestication, and the infrastructure-based prototype, illustrated by the DementiaWall and its generative quality

'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

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

Care and design: an ethnography of mutual recognition in the context of advanced dementia

While there have been considerable developments in designing for dementia within HCI, there is still a lack of empirical understanding of the experience of people with advanced dementia and the ways in which design can support and enrich their lives. In this paper, we present our findings from a long-term ethnographic study, which aimed to gain an understanding of their lived experience and inform design practices for and with people with advanced dementia in residential care. We present our findings using the social theory of recognition as an analytic lens to account for recognition in practice and its challenges in care and research. We discuss how we, as the HCI community, can pragmatically engage with people with advanced dementia and propose a set of considerations for those who wish to design for and with the values of recognition theory to promote collaboration, agency and social identity in advanced dementia care

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