For my PhD project I did a study in which my partner got access to my location via a GPS tracker as it is used in dementia care. One of the issues I struggled with was that he had control over the data and would be able to change the settings without my knowledge. I responded to this by drawing out a speculative idea of how design could support trust.
The cube enables control over two functionalities: access to location and access to sound (potentially also image). If furter has a button with which to establich contact. Two sides show the same arrangement of buttons, one for each partner. The top shows a light that either shines green, when both have the same settings or red, when the settings are different from each other. The front shows a notepad on which to leave messages, e.g. why one partner changed the setting. The back could show the location of those partners who agreed to it.
The device has one problem that I have yet to overcome. While studies show that caregivers would like to prevent people with dementia from changing the settings on purpose or by accident, people with dementia would like to have control. It would be interesting to test though if this applied to all situations. I imagine this to be used quite early on after the diagnosis, more as a tool for communication and exploration, rather than practical support. Another question that needed exploration is how this device would affect quality of life and whether it would be considered to increase the stigma around the illness or be a painful reminder of the changes that become necessary.
This solution still has many flaws that have not been overcome. It is still based on monitoring, still might lead to conflicts between the partners, but I think it approaches the problem from a slightly new angle by giving control to both partners. It is still possible for one to control it on their own, but the knowledge and understanding of what is happening with the data is shared.
There have been no reflections last week as I have been to a conference and took the chance to take a couple of days off. The combination of new ideas and not thinking about work at all have been highly energising to me. With the help of a couple of reflections on this blog I have started to bring the elements that I felt far apart in my research so far come together.
I picked up my report again and try to rework it to clarify this new line of argument. I use the term “holistic technology” for now which I define as such that addresses the person with dementia as an active user of technology and take potential future technologies into account. I acknowledge participatory design as a useful and needed method to achieve this, but raise the point that this will not be able in all projects, e.g. short term student projects or commercial projects and emphasise the need for alternative methods.
I propose a range of workshops to explore critical and speculative methods to raise empathy as a response to the challenges presented by dementia.
When doing my initial literature review I came past a book with articles on Borgmann’s device paradigm, which I kept on rumbling in the back of mind as it was not directly applicable, but touches on something I am after. When hearing a talk by Holly Robbins from the Connected Everyday Lab at the TU Delft at NordiCHI 16 conference referencing the concept and using it to inform design that makes the user aware of the impact of technology use, I decided to go back and dig deeper into it.
In my understanding Borgmann compares the use of devices with so called ‘focal things’ and outlines that devices do one thing very well, but limit our experience as they do not require much skill or attention. They do not shape our behaviour as focal things do, thereby distancing us from the effects of the technology. His main example is the hearth, whose function of warmth we have replaced by central heating, which has freed time. But according to Borgmann it has also deprived us of the exercise of preparing wood, of the turning of time by the rythm of the fire.
While I understand the reoccuring criticism that Borgmann’s view are quite nostalgic, I find aspects of his theory resonate with my project. Many tele-health technologies focus on one aspect of health, e.g. medication monitoring or monitoring of physiological signals but do not take the full experience into account: emotional state, general well-being or the impact of human contact. We do not yet know which important factors we leave out, but the devices used in tele-health seem to limit our expectation and understanding what care means. Can knowing where someone is be equaled with knowing they are safe?
A comparable point is made by Fry (2012) who argues that the technologies we use today are black-boxed which does not allow us to get close to it. We are not able to fully understand it, respond to it, repair it on our own and we might not know how it works.
I am interested to see how we could bring a more hollistic approach to dementia care. While I think participatory design is an excellent method to do so and I am looking forward to new methods being developed that will make it easier to engage people with dementia throughout the design process, I think limits to time and expertise will hinder the full implementation of these methods to all projects, particularly in a commercial setting. I therefore aim to use methods of bringing empathy into the design process by identifying more with the potential user group. Designing for ones own future is one method which I explore throughout.
I feel I have not achieved much since the last post. Working still on the data anaylsis and write-up of my last two studies, I struggle to motivate myself. The overall structure and story of the chapter now stands and what remains is to fill in the details, write out the discussion which so far only exists in key points and pull it all together.
I find that hard to achieve because it is an iterative process of going through the text I have written again and again, finding the flaws, finding what is not yet clear, expressing the thoughts that are only half formed in my head at this stage.
After quickly making progress when writing the outline of the text this to-and-fro seems discouraging and draining. I think I will forward the text as it is soon and turn to other things such as the planning of the studies with which I want to address the question that starts to appeat ever clearer in my head. I have planned to start writing an ethics application to force myself to go into the details of what I want to do, whom I want to inclove and what I think the results of the workshops will be.
Turning to other tasks and going back to the text with feedback and new ideas will help me to overcome this lack of motivation and see the text progressing.
At the end of last week I had a supervisory meeting in which we discussed the timeplan until the next milestone – and it sounded all so easy. Too easy I should have guessed. For most of this month I will focus on the analysis and write-up of the last study I undertook and while this works definitively more smoothly than with my first study it still feels a lot like one step forward, two steps back. Even though I gathered the data and I am familiar with it, it is still complex to find the overarching topics in there, not to get lost in the details, not only to look for the things you were expected to find.
The writing is both way and goal of the process, which makes it hard at times to focus on it. A lot of writing will be thrown away because it is not good in itself, but it helped to paved to way for something that is. I still find that painful and this is what most of this week has been about, so I am not too happy with the result.
While I am struggling for the right words to describe what I see in the data and the right words to explain why I think they are the right words and important, I also take down notes about the way this analysis makes me think about the whole project I am undertaking and how it has influenced my aims and goal. Going on with my project will be a bit like this data analysis. comparing the small with the large, trying not to get lost in the details, trying to see the work with new eyes. I expect it to be slightly painful even though it sounds all so easy in theory.
I struggle to find the find the words, but I accept that they help me to build something. In all other projects before I had to show ‘the thing’ I made and the words I wrote were more an afterthought. In my mind this is still how this project will be going and while I still expect to make at some point of the PhD I start to accept that this is the ‘thing’ I build. From words, not yarn. Unfortunate still and non-interactive at the moment. It helps me to put more emphasis into my writing, make it clearer and build it more like a thing. I still feel guilty for not doing more and I still have to learn how to deal with this. But not this week, not next week, when I will be building with words.
Two days ago a year ago I started my PhD. I re-enrolled and I am officially a 2nd year. As with most things in the PhD in my experience, the transition is a fluid one. I mostly see it by new students starting and me taking on new responsibilities like teaching. But there is no clear cut. Looking back, my project has changed immensly. After doing research, in conversation with others what I looked at has evolved and changed. The area I look into has changed. The methods I chose are more refined than I originally thought. But nonetheless I see a red thread running through the whole process. There was an unease with the way people living with dementia are treated in the technology development process that fueled my initial idea which is still guiding what I do now. I have only changed what I want to do about it, playing more towards my strengths than I originally intended.
After my viva I felt a bit stranded. I have been working quite intensly towards this deadline and felt lost after it was over. I took some time to read interesting papers that had piled up on my desktop, getting inspiration and looking deeper into things that still need refinement. But in contrast to earlier times I have been able to communicate this and ask for help with structuring the time to come. I have a very broad plan now on how to proceed and will fill that with life as I go along.
I am still paddling along, caught between times in which everything makes full sense and those in which I have no idea what I am doing – or supposed to do. But I start to accept this as how it is going to be, deciding on what I know when I feel confident to do so and asking for help when I struggle. I feel like a fish in water, sometimes letting the current take over, sometimes taking full control. This is one important thing I have learned in this last year.
One feedback I have recently been given is that I need to go back to my study plan and re-evaluate how it all links together. This in turn will help me strenghten my researc question and clearer formulate the aim of my PhD project. I will not address them one by one, but instead will reflect on the areas that are represented in all of them.
- Technology: While I initially looked into all technologies developed to support people living with dementia, monitoring technologies have become a focus of my research. These technologies mainly benefit the caregiver by supporting him in monitoring people living with dementia or by relieving him of some of these duties. It is associated to the (perceived) risk people with dementia may be living in, to the question whether they enhance the independence of people living with dementia by enabling them to stay independent for longer or whether they infringe on the privacy of people living with dementia, which may have an impact on the autonomy as well. I see smart, intelligent, context-aware or connected technologies as an extension of this as they address the same problem area and potentially have the same implications in regards to personal rights.
- Dementia: So far I have not yet addressed any particular type of dementia, but use it as generic as I find it in the literature on the topic of technology. I am aware of many different types of dementia and how they differ and will limit down the topic as I see appropriate.
- Empathy: This has so far not been an explicit item in my research, but I wonder if it should be so. The studies undertaken so far – and those planned – all have an element of this. In the initial study I specifically chose names and descriptions to evoke empathy as well as asking participants to think about themselves in the situation, I used dementia specific technologies to develop empathy myself, the story I wrote is made relatable, i.e. aims to create an empathic connection, and I aim to work with people who know people living with dementia thereby being able to relate to the person. Especially if I turn my focus from learning from users of technologies to designers (or even both? ) empathy becomes a tool I use. What I need to become clear about is to what aim I employ this tool. What is it I want to change? People’s opinions? Ways of working? Is it just a tool to elicit responses? This is something I need to dig into deeper.
- Future: All of the things I have done and intend to do have a focus towards the future. Individual futures , technological futures, short and mid-term futures. This is firstly related to the shift in technology that I see happening and the wish to learn more about the outcomes this may have, but also because I do not yet see that happen much. Technology development seems very much caught up in the now, with little regard for where the technologies may go, how they may develop.
- Values: So far I normally used the quite generic term ‘values’ to explain what I am interested in. What my research started to focus on is the complex and complicated relationship between privacy and autonomy in regards to moitoring technologies. I am also interested on the ‘beyond privacy’ – what does this entail? How does ot play out in the everyday? Is privacy a value in itself that is worth protecting or are there other factors that play into it, e.g. quality of life, relationship with others? The question I am interested in goes beyond privacy in the info-sec way: Is encrypting data enough or do other factors play into the understanding of privacy that will hinder the use or acceptance of the devices/technologies currently developed/proposed?
Critical Design Methods share the focus on future developments, and the aim on critiquing the values/biases in designs, which will make them an useful tool to use in this project. Nonetheless I wonder if I did not put too much emphasis on critical design methods so far and if my aim does not go beyond learning about the methods, but learning about the technologies and exploring their future developments.