Empathy, Participatory Design and People with Dementia: Sharing is Caring

In the paper “Empathy, Participatory Design and People with Dementia” Lindsey et al. evaluate an adapted Participatory Design method named the ‘KITE approach’ used for the development and evaluation of a safe walking aid for people with mild to moderate dementia. Through striving for an “empathetic and respectful engagement” (Lindsay et al, 2012: 521) [1] directly with people with dementia – rather than using the voice of their caregivers – research can take another step (no pun intended) towards treating participants and their experiences with the respect and dignity they deserve. This engagement is in direct response to addressing the large gulf between the holistic experiences of designers and people living with dementia, resulting in some participants to have previously be defined by the restrictive “sum of their acquired impairments” (Keith and Whitney, 1998) [2], their essential point of view neglected.

In using the ‘KITE Participatory Design’ approach with pre-formed dementia support groups for established trust relationships, initial design stages attempt to develop a holistic understanding of a person with dementia’s day-to-day life, making use of physical prompts such as iPods and digital jewellery to encourage discussion. Thematic analysis is discussed openly with the group so that interpretations can be both validated and focus attention on the subjects being discussed. After suitable participants have been selected, storyboarding, paper and functional prototypes are used to further the design process, resulting in two final artefacts; a notebook and running band that transmit location information about both their owners to aid walking safely without the need of a caregiver. Lindsay et al. additionally promote techniques such as using a frequent person of contact in a rapid, iterative design processes, personally tailored physical artefacts to reduce the requirement for abstract thinking and a common frame of reference to focus each following discussion.

The paper thrives in its focus on an in-depth discussion of the methods selected, accompanied by detailed justifications of any alterations and considerations of methods made rather than focus on any actual ‘result’ – in this case ‘Alice’s’ notebook and ‘John’s’ running band (Hendriks et al, 2015. 4:14) [3]. Although the impacts of the artefacts are briefly evaluated, it is clear that the focal point of the paper remains on the process of allowing empathy to foster between the designers and participants, with a clear nod to the generalisability of these processes – such as using a frequent person of contact – so that other researchers may adopt these within their own work with people with dementia in the future. Lindsay et al. could have also stressed that great insight can be found when applying these techniques to design work with groups of less complex needs, for example using rapid prototyping could ensure that all participants feel that their opinions are taken into account by the designer.

The authors successfully strike a balance between a highly individual approach and a generalisable framework, acknowledging the underlying dark side of “participatory” design; directly influencing discussion through prompting, disempowering people through taking action on analysis too early, directly influencing conversation through ‘prompting’ and taking the caregiver account as a viable substitute for the end user.

Selecting a paper that demonstrated good participatory design proved very difficult after reading this paper, finding lots of papers failed to mention what role the caregiver played in the design process, resulting in a technology for people, not by people. Although not perfect in practise, ‘Scandinavian participatory design: dialogic curation with teenagers’ http://dl.acm.org/citation.cfm?id=2307109&CFID=679726724 is a good example of engagement with this age group that can seemingly be sparse in PD.

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[1] Lindsay, S. Jackson, D. Ladha, C. Ladha, K. Brittain, K. Olivier, P. (2012) ‘Empathy, Participatory Design and People With Dementia’ CHI ’12: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, pp. 521 – 530, URL: http://dl.acm.org/citation.cfm?id=2207749&CFID=679726724

[2] Keith, S. Whitney, G. (1998) ‘Bridging the gap between young designers and older users in an inclusive society. In Proc. The good, the bad and the challenging: the user and the future of ICT’

[3] Hendriks, N. Slegers, K. Duysburgh, P. (2015) ‘Codesign with people living with cognitive or sensory impairments: a case for method stories and uniqueness’, CoDesign, 11:1, p. 72 URL: http://www.tandfonline.com/doi/abs/10.1080/15710882.2015.1020316