Four concepts around monitoring

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.

Follow-up questions:
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?

Reflection Week 8


Making sense – work in progress

I am the first to admit that the reflection on this blog is not as regularly as it has been for former study projects. I am not sure if my lack of clarity leads to a lack of reflection as I experience it, or if the lack of reflection leaves me rather confused and drifting.

I have spend the last two weeks reading and getting an overview on what is done academically in regards to technology and dementia. While my initial open internet search identifiyed about 100 papers, I have used these to identify more papers through the references and introduction of projects within the texts. First ideas and thoughts start to emerge and I start to write them up in this blog.

I have deliberately taken this step to process what I have read so far and to identify key topics, before continuing the literature review. I am aware that what I have read is not the full picture, but I feel confident that the sample has been large (and randomly selected) enough to give a good overview and identify areas work is been done in.

In the next phase I want to combine reading about technological developments with reading about other issues identfied earlier, to be able to create stronger bonds between the topics and link them together better.

I find the discussion about monitoring and dementia quite interesting as it combines various other issues around dementia, technology and design. Bringing in a strong interest in privacy issues and holding strong views against surveillance, I feel many of the projects I have read about lack clarity about the implications and neglect an empathic understanding of what surveillance might mean to the individual. Even though it is too early to decide on this, I am considering making surveillance and privacy a case study at this stage. A blog post about this is in progress.

This idea is pushed further by my plan to have a workshop at the Chaos Communication Congress about dementia and privacy this year. This would enable me to collect more -and maybe contrasting- views on the topic, but also possibly practice the development of design probes or explore other speculative design methods.

Reflection Week 3

I started this week without a strong plan of progress. Therefore I took some time to sort my thoughts and go through the research so far. I identified key topics and tried to put them into context as well as collecting outstanding quotes from my research. In the weekly meeting with the supervisor I talked through this that I selected quotes which give further direction, rather than definitions.

ResearchBoard_month1In doing this, I found that I have lost the overall aim of my study at the moment. Even though the initial serendipitous research has been useful in helping me to identify possible topics and further areas to look into, I should change my research direction at this stage. After talking to my supervisor  I set up a more formal literature review in the area of dementia and HCI, areas I had previously neglected, but rather explored the deeper topics.

In looking back at HCI and dementia again I will be able more easily to define the gap in the literature and position myself against existing projects.

Hacking and dementia

Hacking in the context of this study will be considered as a craftlike activity, that takes mastery and skill to create something new, often with a trangressive and/or playful element. It incorporates all sorts of material and digital techniques used, but I expect a focus on material hacks at this stage.

Dementia is an umbrella term for degenerative illnesses that affect the brain and lead to memory loss and/or behavioural change that influence daily activities.

In this post I want to explore the relationships in which the elements of hacker culture and dementia overlap and what questions can be generated for this research project.

One rather obvious overlap is the area of specialised hackathon events, in which designers and developers get together to find innovative solutions to specified problems. Even though an expert panel is often involved, people with dementia hardly are. This area will be discussed during the project, but as I assume now mostly in the context of expert participation and elements of co-design.

Hacking and craft: Hacking needs an element of mastery. Even though some design by use or everyday design creates new uses for everyday objects, in my opinion little of those constitute hacks as they are done unconsciously with little skills involved. In the context of dementia it will be interesting to explore whether crafters or people involved in DIY are more open to self-made solutions after a diagnosis, e.g. if this kind of activity is linked to ones life story. The element of tacit knowledge and how that can be drawn upon by people living with dementia will also be part of this exploration.

Hacking and innovation: Everyday design alters objects, but not always does it create innovative solutions. Even though putting a jacket over the back of a chair constitutes a new use for the chair, it can be observed on a nearly everyday basis and therefore does not lead to innovation. Creativity and innovation are still subjects I need to look into further, but I will do so under the context of divergent thinking and how far this is preserved in people living with dementia. The roles that partner and next of kin play as innovators will also be relevant to this exploration.
Materials and methods for ideation used form another interesting aspect of this subtheme.

Hacking and transgression: In this context I want to look into power structures between people living with dementia and their carers. Who does bring in assistive technologies and by whom are they used? Questions of identity and citizenship are touched upon in many instances of technology use in care, such as surveillance and acceptance of tools.

Hacking and wit: Even though playfulness is rarely a topic considered in the context of dementia and care, I am convinced from anecdotal evidence that is plays into the everyday experience and I consider two subthemes in this context. The first one is the question how playfulness is linked to dementia and whether this is incorporated into the everyday experience of people living with dementia. The other point is the question whether technologies, tools or strategies are developed to facilitate this exploration on the context of care.

Reflection Week 2

This week I got sidetracked from the original plan and have managed to confuse myself.

A key text of this weeks reading has been “Design by Use” by Brandes, Stich and Wender, which explores the concept from various angles, e.g. inside & outside, gender-related and from a philosophical point of view. Most insight is based on observation and participant questionnaires and backed up with images. The methods described and images provided are very close to what I plan to do at this stage. Even though reading through their work has been highly exciting from this point, it left me slightly ‘lost’  as to what outcomes of this kind of research might be and what value might be added by this knowledge.

What this book got me thinking about -and what got me sidetracked- is the topic of form and affordance. It leads me back to my interest in objects and how people relate to it – and in how far this is influenced by the user and how far by the designer. I am still unsure where I stand personally on the question of appropriation and inhowfar this is a creative act, but it is something that my research will evolve around. In “Design by Use” the authors give many examples of objects used in different ways than they were intended,  which obviously involves creative thinking in the sense of problem-solving and divergent thinking. But some of these examples, such as jackets flung over chairs or the use of jars to hold paint brushes, is so well known and so common that I hesitate to consider it a new or creative use. This leads to the interesting question of when use is considered creative and what establises a new use?
Form and affordances have been named as relevant influences on how objects are used and it is therefore very interesting to consider them in the context of appropriation. I read the original text by Gibson of affordances, which I have come across mentioned quite often to get an idea of how it become such a relevant topic in human-computer interaction. In my opinion there are two thoughts that I take away: Firstly that affordances are neither subjective to the observer, nor objective to the item, but they get meaning in the context in which they are used. The other point of interest is that affordance is different to other descriptive qualities of an object, such as size, colour, material etc, which allows for new uses and appropriation.

Even though I have practiced writing a blog as a research tool for all of my MA, I think I need to adjust my technique for the PhD. I write two sorts of entries, one of which collects my research and the other my reflection. I need to make sure to connect the two strands better, which will not only support my writing and the communication of my insights, but also help me to stay focussed of where I am going with my research. While for my MA I wrote mostly about individual articles or summed up a couple under one heading, I think I need to work more with headings and themes now. I have tried that already, but I think the different threads are too widespread at the moment and do not allow for consistent linking.

Reflection Week 1

This first week has been a lot about finding my feet and understanding how to do things. Even though I partly know what is expected of me at this stage, it is still the question of how to actually do it. I am not saying that I know now, but I am starting to develop a certain structure to the day that I hope might help me. At the moment I feel very behind with things and hope to catch up soon once I have settled into the big city better.

This first week / month is all about exploration. It is a mix of looking deeper into the areas my project touches upon, challenge my assumptions and explore new areas that are linked to these subjects.

As a result of last weeks research I have set up a definition of ‘hacking’ which can be found on the glossary page. I identified three core aspects: making something new, an element of mastery and wit or playfulness. I am not sure how to measure mastery as most of the practical examples I have so far include too small alterations, but it will be something that will play a part in this project. Humour has been a part of my interests for a long time, so I look forward to look deeper into this.

It has been very hard to draw a line between hacking, DIY and craft and I do not think that this might lead to anything at this stage. If an alteration confirms to the three items above I will incorporate all types of media and tools used.

There is a very interesting distinction between the professional and the amateur as well as work and play that I want to come back to at a later stage.

What I want to focus on for the upcoming week is the question which part creativity plays in innovation and how it relates to resilience. Research into both these areas will be guided by the question: What makes some people creative and others not? Where does inspiration come from? Does it help to be able to appropriate items to feel in control.

Hello World

New project, new blog, new topic! These are the best of times. This week I have started a new research project for my PhD at the Interaction Centre at University College London (UCL). As I have moved from lovely Nottingham to the big city London, my project has grown in scale.

My initial topic is called “Dementia Hacks”, because I want to look into alterations people living with dementia make to their environments. Design not for people living with dementia, not even with people living with it, but design by people with dementia. In the upcoming week I will start by looking into hack events and the relationship between hackers and makers and health services. Who hacks for whom? Why are hacks initiated? What are the results of hacks and how relevant are the results? And how does dementia come into all of this?

I have found writing incredible helpful to sort out my sorts, address reoccuring themes and keep track of all – well, at least some – of my thoughts during reading. I hope you can find something interesting here, find inspiration or just generally learn about the topic while I do.

Enjoy! Hello World.