Designed with DeMEntia : building long-lasting collaborative care

Winton, Euan and Rodgers, Paul A.; Rodgers, Paul A., ed. (2022) Designed with DeMEntia : building long-lasting collaborative care. In: Design for People Living with Dementia. Design Research for Change . Routledge, London, pp. 39-50. ISBN 9780367554750

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Dementia strips people of the unique attributes that form a person’s identity, but it is suggested that how we relate to the world emotionally is one of the last things to escape us (Evans, 2001). Therefore, it is imperative to work within models of care that recognise and engage with how people living with dementia feel about things they are engaging with. In terms of emotional well-being, a diagnosis of dementia is also often accompanied by a sense of loss, a loss of purpose, a loss of value, and the loss of societal usefulness diminishing self-worth (Batsch and Mittelman, 2012). It is commonly recognised that people with a diagnosis of dementia are often written off by society long before their time (Katsuno, 2005). In addition to this, all too frequently people living with dementia underestimate themselves further contributing to a lack of self-belief, capacity, and esteem (Kinnaird, 2012). This research rejects those widely held assumptions and pre-conceived ideas surrounding people living with dementia. Instead, it focuses on the positive aspects people living with dementia possess, such as the ability to learn new things, develop new knowledge and skills, and participate in new creative ventures. In particular, this work explores how design as an interventionist tool and method can empower people and support the reinforcement of their personhood (Kitwood, 1998). The work presented in this paper looks to develop an individual’s capabilities above and beyond his or her existing personal experiences and does not dwell on incapability. As such, the way design is used unlocks latent skills, explores personal knowledge and tastes, and promotes personal opinions within collaborative practices. Through developing projects, products, and events, the inclusive social activities in Designed with DeMEntia unpick these themes. In this work, multiple media, techniques, and tools, all seen as part of the designer’s toolkit are utilised and have been adopted by people living with dementia. Through the design-driven projects described in this paper, the act of conducting real-world research leading to the formulation of ideas plays out within groups of people who desire to make some sort of impact in their own lived experience. In their production of very real and impactful outcomes, which have been purchased by the general population, people living with dementia have taught themselves new ways of looking at the world. Stimulated by engaging with the influences that surround them, people living with dementia have explored their capabilities, and in so doing, promote a genuine sense of value and self empowerment. People living with dementia, through their participation in these projects and abilities to deliver new ideas or by driving new approaches, are recognised throughout this chapter as co-designers.