This post is part of my ongoing reflection on my literature on technology and dementia in progress. It is not part of the formal evaluation but a more personal account of mine to make sense of the literature and develop themes from the research.
One reoccuring topic for me is the fragmentation between design and use. From the 87 papers I have indexed so far, 40 decribe the development or design of a technology. Most of these have been tested -some involving people with dementia, others not- short-term to improve usability and to test the overall design.
Very few papers in my review so far observe how people interact with existing technologies, what tools and technologies they have access to and what tools and strategies they develop themselves. Rosenberg and Nyberg (2011, 149) have done so and observed that use of assistive technologies changed over time :
“Needs for adjustment or replacement, arising after some time of use, were not obvious beforehand and hence the actors could not have anticipated them. Instead they appeared when the person with dementia had had the AT at home for a while.”
One reason why I am interested in the question of use is that it gives insight into the context of use. Which in turn is important for two reasons: Firstly context of use can help to improve a design and make it more usable. If the designer understands the restrictions of the user and the context of use, he can put in measures to prevent them from interfering with the use. This is a position taken for example by Mahmud et.al. (2010, 122): “Based on these findings, the context-of-use will be explicitly taken into account in our approach to create an interactive systems that prolog independent living of elderly people with early and mild dementia.”
Within this post I argue that many designers -and possibly researchers- do not know enough the context in which objects are used by people who live with dementia, how the illness affects use and what the emotional context is in which the objects are used.
The reson for not observing people living with dementia is often given as: Access is complicated. Which I agree it is. I am aware of limited physical access as people might become more withdrawn after a diagnosis. Ethical committee clearance. But also more social, as it is a very sensitive issue.
Authors such as Peterson et.al. (2009, 1) stress the importance of observing and understanding context of use before embarking on making new products: “Researchers and developers will gain the most benefit from studying and observing how the elderly currently interact with computers and the reasons why they choose to do so or not.”
Within my PhD research phase I want to a) learn more about the limitations that have been observed when involving people loving with dementia in research and how they have been overcome and b) learn more about empathic and exploratory design techniques with which designers can build on what is already known.