Technology and dementia – and autonomy?

Here is one of our semi regular guest blogs, this time from Britta Schulte.  Britta is a PhD student at the Interaction Centre at University College London. Britta started research into design for dementia during her BA in Fashion Knitwear Design at Nottingham Trent University (NTU) and further into an MA in Interaction Design at NTU. Her practical work include both a conceptual collection posing questions about identity, the concept of care and clothing and a digital journal that supports reflection after the dementia diagnosis by measuring stress signals which influence a drawing tool or reflective questions. Her current work is reflected on at dementiahacks.wordpress.com. She is always open for discussion on twitter as @brifrischu.

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I study at a school of Computer Science, with people who know a lot about technologies and like it a lot. The attention is slowly but steadily turning to dementia and the question of how people living with dementia can be supported. Support for people with dementia to live more independently is as much a topic as addressing caregiver burden. A main motivation often given is also the reduction of costs that arise through professional care, and the follow-up costs such as caregiver burnout or depression.

While it is good to see that developers start to tackle dementia, many of the solutions developed have attracted a lot of debate. Particularly those that monitor people with dementia have raised questions about the privacy and autonomy of their users. While GPS trackers and video monitoring can give peace of mind to caregivers, they can make people feel uncomfortable and may therefore be rejected. Concerned voices point out that people with dementia may accept those technologies to please their loved ones, rather than their own volition.

It has also been questioned whether the devices and gadgets developed are suitable to match the complex situations of care, matching e.g. both formal and informal settings, or whether they are applicable to all stages of dementia. It has been observed that caregivers may be hesitant to bring in a new device before a problem arises, but it may be too late to learn when introduced after some time. People with dementia may find technologies stigmatizing that they have to wear or use ‘because of the dementia’ and might not feel ready or in need of this.

New developments aim to respond to these problems. The question of privacy has been raised and novel approaches use encryption to make location data only available in terms of an emergency or to monitor camera data with a machine learning algorithm, thereby making human observation unnecessary. Smart technologies are increasingly developed that respond more individually to their environments, thereby addressing the problems current reminders and support systems have. Smart phones and other mobile devices such as tablets are increasingly used to overcome the stigma of stand-alone devices and make use of the wide range of sensors embedded into these devices.

While I consider all these promising in making technologies more acceptable and more useful to people living with dementia, I see one gap: autonomy. In my opinion, none of the technologies available on the market and little what is developed at the moment aims to give control to users with dementia. Most rely on caregiver support when setting up and maintaining the technology, with little provision to share the responsibility at least for a while. Alternatively, the technology takes over the tasks of the caregiver.

In the beginning of my PhD I tested a reminder, a GPS tracker and a house monitor sensor myself to understand what it feels to use these technologies. All of these had technical limitations and could have been improved both in regards to their functionality and privacy, but the worst thing to experience for me was that I had no control over the device. I did not get any option to change the settings if I felt necessary or even know what data these devices monitored and shared over my person. Throughout the time I used them – or rather had them used on me – I did not connect with these devices or accepted them as part of myself.

I have little experience with dementia myself. I cared for my grandmother a while and I read up both on personal accounts and medical reports on dementia. I am aware that dementia symptoms can make it hard or even impossible to actively use technology, especially as the illness progresses. But as twitter feeds, blogs and other sources show, it is possible, at least for a while. Not making technologies interesting to use, helpful and accessible for people with dementia, but rather see them as support tools for caregivers, I consider to undermine their autonomy.

Methods have been developed in technology development to reflect on values and make designs more applicable to their users. Participatory methods in which the designer works together with people who have been diagnosed have led to novel approaches but they are rarely applied as recruitment and ethical procedures can take too much time to make the project sustainable. Developers may be hesitant to engage directly with people with dementia as they may not be too aware of the symptoms of the illness and whether to approach this sensitive subject.

Within the rest of my PhD project I will focus on the question which methods can be used to engage designers in the debate in a way that suits their project cycles and skills. I hope this will not only lead to novel technologies but also bring the debate to the front what needs people with dementia have and what care – and the technologies for it – implies. While we should use what we have at the moment when it is applicable to the situation, I think developers should not stop looking out for better alternatives and reflect how they ideas may impact those using them.

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