Dan’s review of week 2 paper: ‘Empathy, Participatory Design and People with Dementia’

This paper provided an interesting insight into the many issues that arise when using participatory design techniques with people living with dementia (PLWD). Because of the rapid aging of many countries’ populations, dementia is becoming increasingly common and therefore more products and services have to be designed with this in mind.

Involving People Living with Dementia Directly

The paper explores several ways in which it can be difficult to include PLWD in participatory design processes, such as the fact that existing participatory design techniques often rely on participants being cognitively able. In the past, this has been dealt with by primarily involving caregivers in the studies, rather than the actual PLWD. Interestingly, the researchers in this paper go to lengths to avoid this – caregivers are still involved, but the PLWD are definitely the main participants. They do this because “the caregiver is not a suitable substitute for talking directly to people with dementia”, as previous work had shown the design requirements given by caregivers “do not accurately represent the needs of their loved ones”. Because the caregivers’ feedback can still be quite informative, the researchers decided to also include them but be more critical of their responses.

Because PLWD often struggle to envision new technologies or intangible issues, the workshops utilized physical props to “prompt” and “spark” discussion about specific technologies such as location tracking and mobile communication. While this certainly would help get the ball rolling in terms of generating design ideas, it has the potential to introduce unwanted bias by presenting the PLWD with the designers’ ideas which they may not have thought of themselves.

An interesting and unexpected development was that the participants had little issue with being tracked by their carers at all times, going as far as to request that it happen. Rather than be concerned by the ethical issue of being continuously tracked – something which seems to come up a lot in other methods of designing for PLWD – the participants were more concerned with reassuring their loved ones that they were ok.

Building Relationships

One of the main goals of the KITE project was “to foster an empathic relationship between designers and people with dementia by demanding close, respectful contact”. The hope of the design team was that by creating a deeper understanding of the lives of PLWD, they could negate the “enormous gulf” of life-experience between the designers and the participants, ergo creating more relevant final designs. However, this isn’t proved to not be as simple as it first appears – the paper puts forward that in order for designers to be completely able to understand the perspective of PLWD, they need to “uncritically accept and engage” with the accounts, ideas and feedback given by them. The paper mentions how the designers added too much of their own interpretations on ideas given by the PLWD, discounting their desires to get feedback through their TVs – instead wrongly interpreting that as “a desire to have feedback integrated into their everyday lives”.  In this case the PLWD were a step ahead of the designers, as they had specifically chosen the TV precisely because of that. The term “respect” seems to have also been included very deliberately – throughout the paper the PLWD are shown to be very important to the process, with new prototypes being “presented” to them and designs being tailored for each person specifically.

One interesting side-effect of participatory design which the designers hadn’t foreseen was that the participants ended up being reluctant to give honest, critical feedback. This was due to the fact that the relationship between the participants and the designers had grown to the point that the PLWD were afraid of offending the designers with negative feedback. Amusingly, the point-of-contact designers had to verbally distance themselves from the project in order to get honest feedback, referring to their fellow designers as “they”.

 

The paper I will be talking about in the third session will be Wild at Home: The Neighbourhood as a Living Laboratory for HCI (DOI: 10.1145/2491500.2491504). This paper gives a good overview of the evolution of participatory design as it discusses different projects over the course of two decades.