Reflections on NewMind Workshop

Today I attended the workshop on the launch and development of the Research Roadmap by the NewMind – Technology in the service of Mental Health – network. Feeling very conspiratorial as the venue was through a restaurant and two flights down in the basement, I was keen to see the title “Vision of future mental health supported by technology” filled with life.

Rather than giving a description of the three talks and two workshops (link to agenda here) I want to give my reflections on the day and highlight some of the issues that stood out to me. We have been told that the slides of the talks will be made available and I will link to them as soon as I have that information.

One of the main points that struck me about the event was a real willingness to question the use of technology in health care and the place it may take. Participants have been invited to “step back” and evaluate during the day, which I found interesting. Technlogy was considered an “enabler, but not always the solution” by Charlie Young, a developer in user-centered health care solutions.

Another theme was human-centred design, which was seen by many as the only way in which technology can work in any care setting. Not only in the development, but also during the use. Again the idea of the “enabler” is taken up in the view by Chris Taylor, the principal investigator of the network that technology should employ strategies that “work for you, not something that someone decided should work for you.” This ‘vision’ to draw on already exisiting strategies has been picked up in the first workshop and it has been mentioned that an understanding what people do themselves is missing and should be a focus of research as well.

Even though ‘living well’ and the use of technology beyond managing mental health is written into the roadmap, it has not been part of the ‘visions’ that emerged during the workshops. When asked to develop future scenarios – in which science fiction was actively encouraged – the solutions felt quite tame to me. Most still aimed at help in the moment. Self-management and peer suport were big topics, mostly based on data input by the user or based on the context. What counted as data was quite varied which I considered interesting. Rather than ‘classical’ quantified self data, I felt there was a trend towards more qualitative data, e.g. one group aimed at measuring thoughts and emotions to achieve a better hospital experience.

Even though I was excited about the afternoon workshop, which was based around questions of ethics, privacy and trust, it was interesting to see that hardly anyone wanted to engage with this topic. With some people gone already, others stepped out of the workshop at this stage. The little interest this evoked has been an eye opener to me, particularly as many different ways of data gathering have been mentioned which may not only be points of attacks for hackers, but may also enforce power structures.

The day has been engaging and I think the approach of the NewMind network to question the role of technology, the openness to draw from users expertise and the approach to bring service users, developers and researchers together is highly interesting. The framework developed so far has been evaluated by the particpants and this iteration has brought up further questioning of concepts. In addition more practical aproaches like a developers meetup and a possible funding budget for feasability studies of health care applications have been discussed. I am further glad to see that the issue of ethics, privacy and trust are part of this framework, but the lack of interest today has rather convinced me to go with it and make it a focus point of my research.

Reflection Week 9

This week I have become a critic and I am fully aware what an annoying role that is. But I also think it does have its uses. In the last week I have mostly written about what I do not like about current projects in technology and dementia. I have written about a lack of interaction and user engagement, a tendency to focus on the symptoms of dementia rather than a user based approach and related to this a lack to focus in caregivers needs or a lack of awareness of distinction between the two of them.

Well, isn’t this typical? There comes a PhD student, takes everything apart and thinks they can do better. Point taken, but isn’t this the point of a PhD? So, while I do not feel comfortable to be in a position where I question other projects without having anything better to offer, I think it important at this stage. It will hopefully enable me to generate a new point of view and add a new voice to the discussion.

It leaves me at a challenging position. I come from a design background and I feel tempted to apply the methods I have learned there and make something from the information taken in so far. For me this feels like a natural way to respond. And much more comfortable than steppuing further behind and asking deeper into the why things they are as they are.

I am very much out of my comfort zone and I can feel how easy it would be to step back and make this a design project. But this is where my criticism comes in and stops me. I have been critizing others for doing exactly that, so I want my PhD to be different. Have possibly a different scope. A different aim. Design to inform, not only inform to design.

I have read more about design methods around artifacts, such as design probes or critique as a concept and I think this could be a good way to get me back into my comfort zone. It may be a way of making something after all. The materials I am developing for the workshop at CCC may be a first step into this direction.

It is something I will focus on in the next days, developing and hopefully testing ideas with others as the deadline is fast approaching next week. I have three ideas I like, but I either need to find a way to bring them together or make a decision which one to chose – which is my weak point. As always I want to make everything. Now.

 

 

Dementia and privacy – going round in circles?

I did not think that I would write a post about dementia and privacy. I thought I would note that this is a topic widely discussed and leave it at that. I rather thought that this discussion should be avoided as it needed no more voice adding the same points again and again.

But I keep on coming back to it. It touches on many issues I outlined from my literature review already (not all of them published yet, but soon to come): The question of whom to design for for when both people diagnosed with dementia and the ones closest to them have different needs and opinions. The question on how to proceed if informed consent cannot be inferred. The question whether safeguarding and avoidance of risks does impose on the well-being of the individual.  It is the questions: ‘What can and should technology do around dementia?’ in a nutshell.

It is a question in which technological solutions are readily available, but ethical, social and political issues are not as easily resolved. On the contrary it is to be expected that people hold strong beliefs and that their actions will be based within a network of strong emotions. It is therefore understandable that many researchers and designers have taken up this topic.

From the 87 papers indexed by me at this stage, 15 deal with monitoring or suveillance, more have been identified. Publication dates range from 2003 to 2015, showing an ongoing engagement with the topic.

Monitoring falls into three categories: Gadgets aimed at informal carers to localise people with dementia should they get lost,  hospital environments that enable staff to monitor whether residents need support or have fallen or ‘electronic fencing’ solutions which notify if peoeple leave a specified radius or disable them from doing so. In all cases the main users of the products seem to be caregivers and the main motivation to keep people living with dementia safe and to avoid risks.

So, what could possibly be wrong with those technologies? The main problem I see has been summed up very aptly by Beauvais, Rialle and Sablier (2012, 156):

  • “It is unacceptable to track somebody without his knowing about it.
  • It is unacceptable to let somebody wander without aid.
  •  It is unacceptable to confine somebody to their home during months or years when he could go out with technical aid.”

But even though I (and many others) argue that all of these are ‘unacceptable’, many devices breach one of those rules. There is a current emphasis on the last point I find, as practices move away from physical restriction towards technical surveillance. Niemeijer et.al. (2015, 308) sum up this development:

“One of the main perceived benefits of using technology in long-term residential care settings for people with dementia or intellectual disabilities (ID) is that it could increase the freedom of movement and consequently the autonomy of clients. Instead of using certain forms of freedom restriction (such as bed straps or locked doors) in order to manage wandering behavior and/or safeguard clients from (self-inflicted) harm, specifically designed surveillance technologies (STs) can be utilized to increase the client’s range of action and movement, albeit in a secure and responsible way.”

Most devices are in danger to break the first rule set up by Beauvais, Rialle and Sablier  and I would argue a lot also the second one. Most devices I read about treat the person living with dementia as the passive recipient of care and in this case surveillance. Tracking devices do not offer interactive features, but mostly transmit the data, when either requested by the caregiver or through a ‘panic button’ that can be used by the person with dementia themselves. So far  have not read about a device that aims to guide the user, calm the user or support the user in any other way. I am very interested to learn how people with dementia employ smart phones and other devices themselves in this context.

Kontos and Martin (2013, 292) argue that this kind of surveillance, which focusses on a management of ‘bodies’, has further implications:

“Yet, as Kenner argues (2008), these systems do more than simply track, record, and transmit data on the movement of bodies; they are deployed to control and manage people with dementia. In this sense Gubrium and Holstein’s (1999) extension of Foucault’s insights is particularly apt here where they argue the nursing home is a kind of ‘panopticon’.”

Batchelor (2012, 106) argues that it lays in the role of HCI-designers to address these issues: “Human–computer interaction designers are tasked with developing technology—be it SNS or tele-health care devices—that is both  user-friendly and protects privacy.” This view is further supported by Niemeijer et.al. (2015, 318), who observed surveillance matters in a care home settings and conclude that:

“Thus, ST [surveillance technology BS.] in residential care should not be approached in a black and white manner, as being either positive or negative, but rather as something which can only contribute to the autonomy of clients, if it is set in a truly person-centered approach, tailored to the individual with his strengths and needs.”

Based on my research so far I agree that more research is needed in this area and that role interaction can play has not been examined to the full extend. The topic is widely discussed and exisiting technologies are both supported or condemned, because the existing technologies force it on a scale in which risk is measured against privacy.

This view point comes from a perspective in which technology replaced physical constraints, ‘allowing’ more physical movement. But I argue that these still breach human rights, are unacceptable and that the ongoing discussion shows that a different viewpoint, a different method of engagement is needed.

 

Technology for dementia – Who are the users?

One of the themes that crystallise from my literature review is the question: “Who uses technology?” and “Who benefits from the technology available?” This is due to the fact that people with dementia rarely live alone. In contrast they are connected to a wider network of people they share their house with, partners or next of kin, who also in a way ‘live with dementia’ and who have very strong -and often contradictory- views on how technology can and cannot be used. Siriaya and Ang (2014, 3977) describe the impact the illness has as follows:

“Dementia not only affects those suffering from it but also incurs a personal cost to those taking care of them. Therefore, there is a strong interest in finding ways to assist the care of people with dementia.”

In this post I want to outline some preliminary thoughts from my literature review on technology and dementia. It is not a full review, but rather a reflective post to enable me to explore the topic and my thoughts on it.

Most research approaches try to encompass both the views of people living with dementia and the ones living with them, often considered the caregivers. Given the closeness outlined above, this appears a reasonable approach, But as Schikhof and Mulder (2008, 479) warn, this can confuse the aims:  “One should be careful, however, not to confuse the needs of these relatives with the needs of the residents.”

Lindsay contrasts this observation with an account of how listening to people with dementia changed their approach to a design project: “In working directly with the people with dementia, we found that we became focused more upon their needs rather than their caregivers so there was a natural emphasis on supporting the activity, not management of symptoms.” (Lindsay, 2012, 1)

Martins et.al (2014, 4) critizise the limited view on the network of people living with dementia: “There is a pervasive trend for these tools to be designed around the PwD and a very limited set of caregivers.” Using online social media, they propose to engage a wider network to get a better understanding of the people with dementia and provide a cognitive prothesis. In addition the authors “call for a paradigm shift where the PwD is placed in a center of a larger support network than what is seen in most cases nowadays.” (ibid, 1) Even though they ackowledge privacy issues with their approach and highlight that networks may decrease after the diagnosis, they argue that through social media the neworks may be maintained: “Further, the relationships between the PwD and these multi-level support networks (family, close friends, neighbors, restaurant owners, officers,..), which are often otherwise rendered inexistent, can be maintained if the different stakeholders feel engaged.” (ibid.) I found this position highly interesting as it shows a new trend that is mirrored by non-technical approaches as well. During the International Dementia Conference the slogan: “It takes a village” has been quoted repeatedly and initiatives such as the Dementia Friends try to raise awareness and therefore increase the wider support network people with dementia can rely on. It would be very interesting to look into this deeper, possibly through explorative prototypes.

In contrast most pprojects address the person living with dementia – caregiver relationship. This relationship often is so strong that it has been described as a “dyad” (compare e.g. O’Neill et.al., 2013, 169 f.) And it is a relationship complex to analyse as different power structures come together. Most development projects argue that products that support the caregiver reduce carer stress and as such benefit the person living with dementia by minimising institutionalisation, as described for example by McHugh (2012, 220):

“The burden on the caregiver contributes to levels of stress and depression, which is found to be a strong predictor for patient referral into institutionalised settings. Therefore, addressing caregiver  consequences not only affects their perceived ability to cope, but also plays an important role in helping people with dementia remain at home for longer and reducing cost to health care systems.”

Boger et.al. (2006) share this view, but describe a slightly larger benefit for the person with dementia directly: “Assistive information technology has the potential to delay institutionalization by alleviating some caregiver duties while restoring partial autonomy to the care recipient […]”. (Boger et.al., 2006, 323)

One aspect in which the relationship becomes very important is access to technology. Both in private settings and care homes is the caregiver considered to have a key role in the decision which assistive technologies are accessbible to someone living with dementia. One important factor is the perceived ‘carer burden’, as identified for example by O’Neill et.al. (2013, 171):

“In addition, the role of the carer was viewed as being very important, with factors such as carer burden, encouragement for the PwD, their perception of utility and their technology experience being viewed as relevant in modelling technology adoption.”

Lazar (2014, 255) also picks up on this and emphasises the need to take it into consideration in care home settings: “There is a clear unmet need for stimulating activities that don’t place an additional burdens on staff, the MCU or the healthcare system.”  Context of use becomes very important in this setting in which the technology needs to fit into the everyday or needs to replace other tasks and activities. Boger et.al. (2006, 324) emphasise that assistive technology ” has promising potential to substantially augment caregiving duties.”

But it has been noted that access might have been prevented “if family caregivers were opposed to the use of this device” (Altus et.al, 2000, 122) or even in a care home setting:

“In some cases the researchers believed that care professionals were negative to the use of technology in dementia care. It was felt that these attitudes may have prevented the user from actually getting a device that he or she was interested in.” (Bjorneby et.al, 2004, 307)

But also the opposite has been noted: “In some cases, the researchers discovered that the family carers wanted the product very much, while the user was not interested.” (Bjorneby et.al, 2004, 307)

Even though there is a strong emerging field to design specifically for someone living with dementia (compare for example work by Astell et.al. or Wallace et.al.), there is still a prevailing view that both caregiver and someone living with dementia benefit from assistive technology. This places many technology project in the context of care from the ideation phase. Even though the importance of the ‘dyad’ between people living with dementia and those close to them is well established, the power structures that result from this lack evaluation in my point of view.

Design for the future of dementia care! Do wo have the time?

One aspect that nearly all papers about technology and dementia share is the paragraph that builds up the pressure. The paragraph that explains how many people are affected now in the region the authors are interested in. The paragraph that highlights how these figures are expected to rise in near future. The paragraph that outlines how high the costs of this illness.

Which is aimed to put the work into perspective and validate what has been done. But, I feel this is also the paragraph that leaves a sense of urgency. A sense that we need to act quickly. A sense that we need measures in place, better yesterday than today.

Which – again – I can emphasise with. I also do not want anyone to suffer for longer as neccessary. I want to make life easier for everyone and I think we need innovative solutions soon.

But, does this feeling of urgency help? Might there not be a way to take the pressure out, step back and think about the long-term impact of interventions?  Take time to establish if what is happening ntow works? Time to connect to others and refine best practices?

It looks as if dementia is here to stay. A cure seems unfortunately long away. Even medication that slows down the process is still in development. Should we not look at how we can prepare for the long term? Just in case?

And even if we find a cure tomorrow, the work will not be lost. All research, all sustainable technological developments we do will benefit others in one way or another.

So, do we have the time not to innovate but to understand? So, in my particular case, could my PhD not lead to a (more or less) innovative product now, but rather to an understanding how technology could aid coming generations with dementia? Understand how my generation might live with dementia? Is this sustainable or selfish?

Unfortunately I do not have an answer either. But I wanted to stop in my steps and consider this option. And I am happy to discuss. What do you think: Should we design for the now or plan ahead? Or both? Do we have the time?

Reflection Week 8

WIP_Week8

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.

Interfaces and interactions – who controls technology for dementia?

Reading through the publications I analyse on technology and dementia I found many interesting and contrasting accounts on ‘interaction’. In this post I collect some initial views and will not be able to cover the topic in total as I am aware that there are still publications covering this topic that need to be indexed. But I hope to get an insight into different themes emerging by writing at this stage.

Cahill (2007, 58) categorise products as follows:

“The technologies can be categorised as follows:
– Devices that are operated by the person (radio, TV, (mobile) telephone, car);
– Systems and devices that others have installed and maintain, but which the person uses (electricity, water supply system, air condition);
– Monitoring and surveillance systems and devices which are either:
∗ activated by the user (safety alarms);
∗ activated automatically when an incident occurs (fire alarm, fall alarm);
∗ monitors continuously or when the operator decides (cameras installed at public places, tagging devices).
Obviously, when the person with dementia has an active role in handling the assistive technology, due considerations to the clinical symptoms must be taken.”

So far I see three themes emerging, depending on the level of interaction required to use a product: Minimal user interaction, use by the caregiver and digital inclusion.

Minimal user interaction is the topic around smart technologies, automatic prompting and health monitoring. I became aware of this approach first, when reading about a project using a smartphone to monitor health-related data of people living with dementia at home. Boletsis, McCallum and Landmark (2015, 19) selected a smartwatch “whose full functionality does not require any interaction, apart from charging it, once every 3 days.” From this it becomes clear that this is a technology to be used ‘on’ people with dementia, rather than ‘by’ them. Skillen et.al. (2012, 6391) discuss the advantage of “minimal user interaction” that a product can  “subsequently offer assistance when required.” Boger et.al. (2006, 324) even go further than this and declare an technology only successful if it works autonomously:

“If they are to be effective, devices aimed at aiding people with dementia must be able to operate autonomously, without any explicit feedback from the care recipient or the caregiver.”

Marilyn Cash (2003, 313) gives an explanation for this approach:

“One of the key characteristics of this set of technologies is that many of them are passive and do not require the person with dementia to remember what they are or how to use them.”

Astell (2006, 16) holds a different view and warns that:

“The use of assistive technology highlights the delicate balance between supporting people with  dementia to remain as independent as possible and dehumanising them by taking over their activities.”

Ancient and Good (2014, 114) share this view and extend it to the concept of care: “It is important to note, that when assistive technology is introduced it should aim to augment the daily caring activities, rather than replace them totally.”

Alm et.al. (2009, 198) add the interesting insight that mastery also plays a role in engaging users with dementia, which in my opinion points towards a more reciprocal mode of interaction: “Having a ‘mastery’ aspect to activities was helpful even for people with working memory problems.”

As an Interaction Designer I am inheritently interested in the joint between humans and technology and the tension that Astell describes. As a result I will focus on technology that interacts with the user in a reciprocal way. I will explore Smart Technologies and Automatic Prompting Systems further, but only in regards to the way prompts are issued.

One exeption will be my ongoing examination of developments in regards to monitoring and surveillance. Even though they lack in interactions completely at the moment, I am interested whether there are ways in which to incorporate them.

Some of the technologies developed address the caregiver as the user of the device or technology. This is only mentioned in passing here, as the relationship between people living with dementia, their caregivers and technology will be explored further in another blog entry.

In addition to presenting the automatic technology, I want to present the alternative view as well, that people living with dementia can benefit from software that caters to their needs and understandings. Peterson et.al. (2009, 2) warns that people living with dementia may not have full access to technology so far: “Unfortunately, when it comes to older adults’ computer usage, they fall into the digital divide, those with dementia certainly fall into the disability gap as well.”

The work by Claire Ancient and Alice Good is specifically important in this regard. They acknowledge both the possible uses of technology for people with dementia as well as the limitations faced at the moment:

“By not considering the interaction needs of people living with dementia, interface designers may be isolating their intended users and hence negating the potential effectiveness of the developed technology. This could lead to prospective users disregarding a technology which could enhance their quality of life, enabling them to remain within the community and increase their safety.” (Ancient; Good, 2014, 114)

They further analysed screen-based interfaces and how people with dementia interacted with them to develop specific guidelines.  (compare Ancient; Good, 2011)

While reading on about technology and dementia one further theme emerged: design for interaction with a partner. Wallace et.al. (2012, 2637) identified this as one of the uses emerging from their art piece:

“Design needs to promote more reciprocal conversations in which clients can contribute their knowledge and share their expertise with staff. Through self-disclosure of personal information a client opens the space for staff to give an empathic response and value the person for who they are.”

A similiar result has been found by Astell et.al. (2010, 274), who also give a positive result from this type of interaction:

“In summary the findings of the present study suggest that CIRCA can change the situation of people with dementia and caregivers to improve their relationship. Joint attention can play a key role in interactions between people with dementia and caregivers by promoting scaffolding behaviour in the caregiver. This empowers the person with dementia and redresses the status hierarchy during the course of the interaction.”

Leaving out the tension of who is  the user of technology – someone with dementia or the people next to them – three interesting themes emerge that can be set in contaxt with other views on dementia. ‘Invisble’ automatic technology follows the biomedical view on dementia that sees people living with dementia in the context of loss of abilities and consider technology as a way to counteract this. In this view technology often takes on tasks currently done by human caregivers and replaces them with technological solution.

Calls for more inclusive (web) technologies see dementia in the context of disabilities and aim to alter development structures to make sure that people living with dementia have the same access to technology as they used to have before or as others not affected by the illness.

Some development projects pose questions about selfhood and a more engaging, exploratory use of technology as the last quote for example shows.