Empathy, Participatory Design and Dementia

The authors explore the development of a design method that works with people with moderate dementia to develop a digital aid that facilitates ’safe walking’.  They begin by asserting that in the past, designers and users held radically different assumptions about what should be incorporated into the design process. In light of this, Lindsay et al (2012) proceed with a participatory process whereby designers, those with dementia, and their caregivers, work towards a shared understanding of what this aid should look like and how it should work.

In previous research, there was a tendency for designers to focus upon the impairments that characterise dementia whilst undermining the experiential aspect of the disorder. The authors tried to overcome this in the participatory process by creating meaningful, empathic relationships with the participants in order to respect their sense of personhood. This is crucial when working with safety-oriented technologies as it is essential that the device is characterised as being ‘enabling’ and empowering. There is a danger that designers focus purely upon the impairments of the person, and foreground the illness during the design process.

The individual’s condition is, of course, central to this project and its very aim is to create something which helps with one of the more debilitating factors of the condition. Despite this, designers should remember that a person’s sense of autonomy and agency is paramount. Two of the participants were particularly engaged with the ideas being developed. Both of them discussed the notion of stigma and how this might be an issue if the devices were explicitly used to stop them from getting lost. This led to a conversation about the importance of a discreet device which could be integrated into everyday routine, whilst taking into account the subjective needs of each person and tailoring the device to those.