How (not) to design for people with dementia

I am currently undertaking a literature review on technology and dementia and will use a series of posts such as these to reflect on the work in progress. This is not a formal examination, but voices some of my initial thoughts and reflection during the process to aid theme finding and analysis.

One of the thoughts that struck me was how generic “dementia” is still used, a view that is mirrored by Kontos and Martin (2013, 296):”First, persons with dementia are largely represented as a unified category that overlooks important aspects of diversity and social difference.”  Even though some authors highlight that dementia is an umbrella term that encompasses many illnesses, very few technology development projects seem to distinguish between them and limit their target group. Of the 54 papers evaluated so far only 4 mention people living with Alzheimer’s Disease as most suited for their product. Even though I am aware that the distinction between types of dementia is not applicable to all projects, it seems to me that a lack of knowledge or concern about the target group is the reason behind this lack of distinction. This is only a personal observation that lacks empirical evaluation. One way in which I aim to follow up on this is by going back to the literature a second time and collect which symptoms of dementia are highlighted within the texts – and which are considered as relevant to the design / research project.

Age, gender or occupation hardly ever come into play when ‘dementia’ has been identified as a target. This does not reflect on general practice in design as I understand it at this time.Trained as a fashion designer, I feel strongly about identifying key elements of a person’s life and lifestyle before embarking on a design project. Keates, Koslovski and Vader (2009, 368) emphasise that this background information is also important for the design of IT systems: “To successfully design an IT system that is accessible to a user with a cognitive impairment requires a full understanding of the IT system and the user’s wants, needs and aspirations.” Especially the mention of ‘aspirations’ does stand out to me in this context. Most technology focusses on loss of abilities and ‘functioning’, very little is done to engage in more meaningful, individual experiences. This will be examined further in another post in more depth.

One way of expressing lifestyle choices is achieved through personalisation of interfaces or gadgets themselves. The need for personalization is highlighted in some of the guidelines which have been part of the review so far. This call stems either from a medical view that considered “stages” of dementia or from the insight that everyone experiences dementia differently. And as Ancient et. al. (2013, 430) reminds us, “as a group of people ages, their individual needs become increasingly diverse [15].”

There is one trend in reminiscence to make content closely relatable to the person involved, but interface design is normally standardised. Some authors highlight that this is a deliberate decision to avoid further confusion, while others do not go into any detail what influenced their design decisions.

How can one avoid designing ‘for dementia’? Slegers, Hendriks and Wilkinson (2013, 475) introduce the concept of empathic design: “When designing a new product or application it is essential to thoroughly understand the users, their contexts and practices; we need to empathize with the users.”

As most designers and researchers are in very different life situations from people living with dementia this is easier said then done. In addition to a stronger focus on observation of how people with dementia use existing products and develop their own workarounds, I think the use of empathic design prototypes could be very beneficial in this context. The question of how dementia makes one feel, how it does impact the experience of everyday tasks has not been discussed much in the publications I analysed so far, but I think it would raise an interesting point for future research.

Wallace (2012, 2624) make another interesting point. Even though people living with dementia were the main stakeholders in their project, they did not design for dementia: “An important distinction to emphasize is that we did not design for dementia we designed for personhood. To date design research in HCI foregrounding personhood and the self is extremely rare.” Even though focussing on individuals and developing highly personalised artifacts poses questions whether the results will be transferable, I think the design processes described lead to a better understanding about the consequences of the illness on a personal, context-based level.



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