Empowering People Living with Dementia Through Designing

Winton, Euan and Rodgers, Paul and Tsekleves, Emmanuel (2022) Empowering People Living with Dementia Through Designing. PhD thesis, Lancaster University.

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Abstract

The ‘wicked problem’ (Rittel and Webber, 1973) of dementia is a leading global healthcare concern. The prevalence of diagnosis is increasing significantly and correlats with longer life expectancy (Spijker and Macinnes, 2013). In the UK has an estimated 850,000 people living with dementia (PLWD). For whom the greatest burden of care is placed on loved ones and privately funded approaches (Alzheimer Society, 2015). The result can be hugely challenging for the person diagnosed with dementia and their loved ones, leading to further issues of ill-health (Marriot, 2009). The Prime Minister’s challenge on dementia (2012) has encouraged development of multi-faceted responses and interventions to deliver improvements in care and research. As a result, designers have been encouraged to become skilled specialists engaged in thinking differently around dementia and the associated problems. This research explores co-design (Scrivener, 2005) with people living with dementia in order to understand their complex problems, and to propose and to shape interventions or solutions that can alleviate pressures which include, social isolation, stress, infantilisation and a sense of hopelessness (Kitwood, 1990). Through fifteen projects achieved within series of co-design workshops, the research explores empowerment of PLWD through their own advocacy. The research shares how co-design can be an enduring process that stimulates new behaviours and memories whilst building resilience and keeping people active in society. Which, ultimately asks questions as to how common practices of co-design can change hierarchy and ownership in order to transform practices of design done ‘to’or ‘for’ PLWD to integrated projects ‘with’ and ‘by’ them. The results propose that people living with dementia can maintain highly significant efficacy in shaping lived experiences, making decisions, building relationships, and producing impactful designs. The resultant projects and proceses supports their right to make decisions and to develop their own prowess through meaningful, deeply involved, and astutely delivered designs.