Learning how many products are developed monitoring people living with dementia, involving Smart Homes, GPS-trackers and video or audio surveillance, is interesting in itself, but I am further interested in issues surrounding these products. The amount of ethical guidelines and discussions around this topic show that people feel a need to have these products, but feel uneasy about their use. In this post I want to outline four areas that interest me and that I could imagine analysing deeper during my PhD project.
Monitoring as Interaction: Being an Interaction Designer, currently at the Interaction Center, this one is obvious to me – but not so much to many people developing these products it seems. In many of these products interaction with the wearer e.g. the person living with dementia is kept to a minimum or non-existent. Many of the devices are designed to be invisible in the sense that their function is neither obvious nor can it be deduced. This is done for two reasons: Reducing stigmatisation and making sure that the device can be used in an emergence without user input. Even though these are valid reasons, I argue that they add to the feeling of unease, as it makes it easy to coerce people into wearing these devices and as it takes away autonomy from the people using the devices.
Keeping interaction to a minimum also may reduce painful decisions about whether the illness has progressed so much that the device cannot be used anymore, which I unserstand as a main point towards non-Interaction. But the counter-argument is that pre-empting these times, the wearer of the device is incapicated before this would be necessary, which could cause damage as well.
Interesting questions to follow-up for me are: Can the devices be obvious, but interesting/aesthetic? How would people feel about wearing devices that arouse curiousity and form the basis for discussion? How about a playful/exploratory discourse on navigation, keeping safe and risk?
Can a mode of interaction in which the wearer of the device is in control be the norm which can be overwritten in case someone feels the need to check? How can that be made clear?
How would people feel about a two-way conversation via the device? E.g. tracking someone is only possible when one reveals their own position.
Can the level of interaction vary? Are there methods of communication for good and for bad days and how could the device distinguish between the two?
Monitoring and risk: I argue that carers are the main users of the these devices as they exist at the moment. Caregiving leads to a high (perceived) responsibility and these devices are considered to control risk. This corresponds with a general shift from controlling danger to managing risk in current gouvernmental surveillance technologies. Even though I fully subscribe to the aim to keep people safe, I feel that the approach of avoiding risk does have its limitations as it brings invasions into privacy and autonomy. It brings with it a very questionable language, e.g. talk of management.
Follow-up questions are:
Could more interactive devices intervene to avoid risk, e.g. by giving people support or asking for help more directly?
How can people communicate which risks they are willing to take? Living will etc.
Monitoring and Mobility: The overall aim to enhance mobility and an independent, active life by people living with dementia is undoubtedly positive. But I argue that the products available at the moment do not do enough to support this as they are only aimed to give support in times of a crisis. Even though they enable quicker help in emergency situations, they do not do much to avoid them, or support people to avoid these types of situations.
Follow-up questions are: Can these devices be more interactive and offer help and support to the wearer of the device? How would this affect emergency situations?
How can we design for a more mobile lifestyle, not confined to a home, with more variables to consider?
As an exploratory/conceptual design, could we make getting lost/exploring fun? E.g. helpful maps that show calm routes or giving tipps for exploring?
Monitoring and Hacking: Avoiding detection and exploring questions around privacy are main topics of hackers. But the connection goes even deeper. As originally proposed, I think that there is a lot to learn from the ‘hacks’ people develop themselves. Located between design and use, hacking questions the assumption that people are the passive users of technology. Learning from what people living with dementia do themselves is more than research into innovation to me; it also has a political side regarding self-gouvernance and autonomous living.
How can we bring hackers and people living with dementia together? E.g. Geeks-in-residence
What methods are suitable to learn how people develop tools and strategies for their illness?