Dementia and the role of the user

After analysing the role of the user in the relationship with the designer or maker, I want to explore further how – and if – these roles are different in the context of dementia. Even though dementia is an illness not only affecting older people, this post does include considerations about this user group as well.

Brittain et.al. (2010, 273) observe that older people are often considered passive users of technology: “Older people are commonly assigned to the role of object rather than subject in the development of technology.” Following up on this view, they argue that in regards to dementia a different notion needs to be explored: “Further research is needed, related to how people with dementia, as social actors, operate independently of and alongside social and physical environmental constraints.” (Brittain et.al, 2010, 276) Astell et.al. (2014, 164) go even further and summarize the results of a “medical view on dementia”, which is “focussing on degeneration and loss of abilities”:

This view is both deterministic and pessimistic (Kitwood, 1990) and fostered widely held misconceptions that little or nothing can be done to help (Banerjee, 2010; Vernooij-Dassen et al., 2005). This has led to excessive disabling of people with dementia (Wells and Dawson, 2000), where an individual with an acquired or congenital condition is disabled to a greater extent than is due to simply having the condition (Brody, 1971).” (Astell et.al, 2014, 164f)

If technology is developed with people living with dementia in mind, it is interesting to consider the motivations and aims behind it. Brittain et.al. (2010, 273) explain one view, which focusses on the role the technology is supposed to take in the everyday life: “Gerontechnology is derived from a human to machine perspective, whereby technologies are intended to compensate for human deficiencies.” Rosenberg and Nyberg confirm this view in their study of how people living with dementia and their significant others become users of assistive technology:”One of the ideas expressed by the OTs [Occupational Therapists] or the significant others regarding the recommendation of new ATs [Assistive Technologies] or strategies were that these would simplify a complicated life for the person with dementia.” (Rosenberg; Nygard, 2011, 146)

Neven (2010, 166) argues that this view might lead to complications as people considered users might reject this view and might be unable or unwilling to adopt this self-image:

“Even if technology could be beneficial to the health and wellbeing of elder users, elder users who feel that they are being positioned as old, lonely and frail may rightly refuse to be positioned as such and consequently refuse to use the technology.”

Becoming a user is a fluent process according to Rosenberg and Nyberg (2011, 149), which takes time and might lead to further adjustments or replacements:

“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.”

When choosing assistive technology for someone living with dementia, two things come into play according to Rosenberg and Nygard. Firstly they emphasise the need to develop strategies to evaluate the need of someone living with dementia. They take the view that observation will play an important part in this evaluation:

“With respect to the difficulties resulting from a dementia disease, it might not be enough to ask the person or the significant others about preferences or current habits or strategies. Rather, it may be necessary to observe the person with dementia in actual situations to see how problems are met and how he or she interacts with the environment.”(Rosenberg; Nygard, 2011, 149)

But they also warn that this observation might be biased and that people caring for someone with dementia bring in their own expectations and restrictions as well:

“The choice of problem did not just reflect the OTs’ and significant others’ perceptions of what the right activities were for the persons with dementia to engage in, but also which problems the OTs and the significant others perceived were possible to solve.” (Rosenberg; Nygard, 2011, 148)

Both Rosenberg and Nygard and Brittain et.al. consider technology both enabling and disabling. Brittain et.al. (2010, 283) observe the use of technology in regards to public space and found that technology might enhance the experience, but also found example in which technology hindered the use of personal support structures.

“But, it also shows the variety of ways people with dementia manage ‘feeling out of place’, with some curtailing activities and others being guided by the physical and social environments which they inhabit. Technologies can support or hinder access to these places.”

Rosenberg and Nyberg (2011, 149) also found, that newly introduced technologies were used to shape the behaviour of someone living with dementia: “In the third category a process emerged, where the problems and needs of the person with dementia were altered gradually in order to match the potential of the AT.”

But they also found that the input of the person was highly important if the introduction of the technology was to be successful. They emphasise “personal motivation” as a factor to establish “whether a person with dementia would prioritize use of the AT as a new strategy”. (Rosenberg; Nygard, 2011, 144)

Regarding the everyday use of technology they give advice on how to enhance the impact of technology. One is in regards to the “right place” which ” was determined by where the person with dementia would most often use it, or where using it would be most important, as well as by its design.” (Rosenberg; Nygard, 2011, 145) The other recommendation suggests that prompts should be incorporated into the technology so that the user with dementia does not have to rely on instructions:

“The analysis showed that even though the persons with dementia were instructed in the use of the various ATs, it was still the use that the AT communicated directly to them that influenced how it was used in practice, as they had difficulty remembering the instructions.” (Rosenberg; Nygard, 2011, 145)

Even though this does make the tools more usable for people living with dementia, it does so in a very guiding way, and might as such enforce ‘proper use’, rather than a more creative exploration.

But the role of people living with dementia does not have to be limited to using assistive technology. Acts of appropriation of ‘common’ tools have been observed not only by Gibson et.al. (see post on Utility Hacks), but also by Brittain et.al. (2010, 282): “Furthermore, when specifically asked if they used any ‘modern’ technological devices to support them in outside spaces, a number of participants said that they used mobile phones.” This points towards a more active use of technology by people living with dementia, which might go beyond the current view of the passive user, who needs support to cope with deficits.

Nygard and Starkhammar (2007, 146) analysed the use of everyday technologies by people living with dementia and found 4 categories of problems arising:

“The barriers to everyday technology use appeared in four domains: (a) as interfering conditions related to the person, the context and the design of the artefacts, and (b) as limitations in the participants’ knowledge of the technology and its potential, and (c) as difficulties in direct technology use, characterized by communication problems both in understanding and in the administration of the technology. The participants’ use of instructions for use (d) formed the fourth domain (Table 2).”

Questions coming up from this post are: What do people living with dementia want technology for? How can these needs be made visible to designers/developers?

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