'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
University College Cork
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.
Dementia , Experience-centred design , Human-computer interaction , Ethnography
Morrissey, K. 2017. '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. PhD Thesis, University College Cork.