Who’s designing? Critical Review of ‘Empathy, participatory design and people with dementia’

Lindsay et al.’s (2012) paper describes a participatory design process targeted towards people with mild to moderate dementia. The process is exemplified in a case study in which personally tailored devices were developed to better cope with wandering behaviour. The authors argue that building an empathic relationship between participants and designers is important when working with people with cognitive impairments. The paper draws on empathic design (Suri 2001) to allow the designer to be attuned to the participants’ needs, have an uncritical sympathetic disposition towards them, and pay attention to the emotional experiences. It argues that participatory design particularly suited, as it democratises the design process and fosters empathy through close and respectful contact with participants. Its origin in workplace contexts, focus on specific tasks, and assumption that participants are cognitive able, however, required some adaptation.

The process begins with recruiting existing groups through dementia support groups to establish a trusted environment. A consistent point of reference from the design team develops a close relationship with the participants and also becomes advocate in internal design meetings. Initial exploratory meetings using a focus group style helped to build a shared understanding. All meetings were thoroughly documented and analysed and then validated by the participants. Validation was important to not inadvertently disempower participants by drawing quick conclusions. Following that, in initial design workshops the authors used existing physical und thus more tangible artefacts (such as an iPod or digital jewellery) representing specific design concepts (such as discreetness) as prompts to elicit reactions. Based on these meetings two participants were selected who were cognitively “suitable” and enthusiastic to continue working. This indicates that there is a limit to the process when working with people with more severe dementia. In an iterative process using new design objects, storyboards, and paper prototypes personally tailored designs were developed. The importance of empathy through the consistent point of reference became evident in several cases, in particular surrounding participants’ lack of concern for privacy issues through tracking. The designers had to learn that participants felt in fact more comfortable when their family caregivers could track them as then they would be less worried about them getting lost.

I really appreciated the authors innovative way of working with people with dementia, adapting the participatory design method to their specific needs. It highlights, however, an open question of any participatory design: By using prompts the designers were bringing particular issues of relevance forward that might not have come up otherwise. This is discussed in the paper for the case of privacy and some others. There might, however, be several cases were this did not get uncovered. Even in participatory design, which aims at democratising the design, the designer is in a privileged position. While working with participants, their values clearly influence and steer the process. Personally I don’t see this as a problem, as long as designers are aware and communicative about their own agenda and don’t hide a method that frames them as pure facilitators.

References:

Lindsay, S., Brittain, K., Jackson, D., Ladha, C., Ladha, K., & Olivier, P. (2012). Empathy, participatory design and people with dementia. In Proceedings of the 2012 ACM annual conference on Human Factors in Computing Systems – CHI ’12 (p. 521).

Suri, J.F. The next 50 years: future challenges and opportunities for empathy in our science. Ergonomics 44, 14 (2001), 1278-1289.

A paper that I think is a good example of involving people in a design process:

Le Dantec, C. A., & Fox, S. (2015). Strangers at the Gate. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing – CSCW ’15 (pp. 1348–1358).