Tag, you are it – a self-test

I have highjacked a colleague’s project this week to learn more about tagging. Interested in questions around data visualisation, he has made a wristband that measures movement and I am one of the lucky ones wearing it for seven days. I have never before worn any of the devices that measure and track heart rate, number of steps, sleeping patterns or whatever possible today. But I felt it was time to get off my high horse, seeing I was ranting about putting tags onto other people.

dem_priv_tag_cut

So, this is the device. As it is a prototype, it is quite clunky as are many of the devices developed in a medical context. Even though it does measure something else, I pretend it measures my position via GPS and see how -and if- this affects me. I wear it to aid someone else, but do not feel that it will benefit me, which seems to be a common scenario in which these products are worn. Carers feel more relief when their loved ones with dementia wear a tracker, but most people living with dementia interviewed do not feel they get something out of it.
I do not really know what it does, which in combination with its “black boxyness” creates a slightly paranoid tingle. I feel myself looking at it quite suspiciously wondering if it could make a noise -for example when the battery goes low- and what I would do if this happens. Even though I have read about this, it is quite interesting to experience this “not knowing” and I am amazed how easy it overwrites what I know about the device. I would not be surprised that this is just a latent paranoia in myself, but others I know wearing this or comparable device have been joking about this as well, so there may be something to it.

The first impression is that I less affected than I thought I would be. It is easier to forget I am wearing this than I thought. But this is also partly due to the fact that this does not do anything for me. The “function” that people might find me easier should I get lost, seemed very far away from my reality and not very useful. Even though I got lost once, I did not find it reassuring that this device might be useful should I get lost even more so, I wanted help (navigation, contact, reassurance) now. I think I can understand much better the opinion of people living with dementia who say that they are not interested in this device. Without any added function, this really does not do anything. The aspect that it might be beneficial in a context that no one wants to happen anyway does not really appeal. It is less an active resitance than more a lack of interest I assume.

In the university I wear this device quite openly as I know most people will have seen devices like these, at least heard about them or will most likely use them themselves. It is different outside though. I do not really completely hide it away, but I tend to become quite self-conscious when others look at it and it does instantly make me consider how this will change their view on me. And even though it would undoubtedly help if it were less black and clunky and kind of awkward, I wonder it it would be enough to make it prettier or if I would see through it and still wonder it everyone would notice what it is.

Even though I can take it off, I have been asked to wear if for the full 8 days, 24/7. This leaves me slightly out of control and I can fully understand the wish to be able to wear it when I decide to do so. (see  Faucounau et.al, 2009 for more info on this. )

At no point in the week did I change my behaviour because of the device. And I did not find it as intrusive as I thought I would. I was kind of happy to wear it aid someone else. But it really did not do anything to assure me, rather led me feel a bit more vulnerable, a bit more in need of help. I had a perfectly good reason to explain to toally strangers who stared at my arm why I was wearing this, and I am happy that I did not have to go deeper and personal to explain why I had to. For me it was a rather neutral experience. It did not harm much, nor did I get something out of it.

In follow-up posts I will describe why I nonetheless see problems with this kind of low-level technology, even though it is not very uncomfortable on a personal level.

 

Monitoring in dementia care and caregiver burden

Monitoring technologies are developed with mainly two goals in mind: enhanging independence and mobility of the person living with dementia and decreasing caregiver burden. Kenner (2008, 253) proposes that these two features make monitoring systems “attractive”, while e.g. Olsson et.al. (2015, 38) conclude that:

“The present study demonstrated that the use of a PPA [passive positioning alarm, edit BS] could provide support in daily life by allowing PwDs to engage in independent outdoor activities and decreasing their spouse’s worry related to these activities.”

While I still need to summarize my understanding on the discussion around mobility I want to focus in this post on the impact of monitoring on caregiver burden.

My literature has shown that “reducing caregiver burden” is a common goal for many sorts of technologies, and surveillance technology is no exception. Many studies found a positive effect through monitoring technolgy such as Faucounau et. al.  (2009, 580), who sum up the effects as follows:

“Among these interventions, electronic tracking systems are available technologies which allow to manage these crisis situations, to locate more quickly the person who wanders outdoors and thus to reduce anxiety and psychological burden of informal caregivers.”

But the introduction of technology is not only seen as a means to relieving burden. When discussing the possible impact of assistive technology on their lives, informal caregivers voiced there concern that “introducing COACH  [an intelligent prompting system for handwashing, edit BS] in the home would shift caregivers’ burden from caregiving to managing the technology.” (Hwang; Truong; Mihailidis, 2012, 45) In my opinion this view seems to emphasise that all activites around caring are considered burdensome.

Purkis and Ceci question this view in their problematisation of the concept of ‘burden’. They argue that the concept has been accepted as a ‘fact’ and this falls in a tradition of academia to “stolidly building up a picture grounded in accepted ideas rather than working to develop new and interesting questions.” (Purkis; Ceci, 2015, 1412) Analysing how the concept of burden is built up, tried to be quantified and used to validate research, they outline a couple of limitations with the current research. They observe that  caregiving is considered “a ‘role’ that can be examined separately from other roles.” (Purkis; Ceci, 2015, 1415) and go on to say that a wider network that may influence this role is left out deliberately from many studies:

“Where physical, organisational or familial arrangements are supportive of these care-giving relationships, readers are unable to learn about how such supports are experienced because they are carefully – and deliberately – left out of the research account.” (Purkis; Ceci, 2015, 1425)

This seems important in the context of technology development as it not only defines further stakeholders, but also leaves out a lot of contexts in which the technology might be used. And Purkis and Ceci (2015, 1414) also observe that the situation of caregiving is often stylised in research, again quite deliberately:

“Though diversity, complexity and particularity might be acknowledged, these characteristics of everyday, relational existence are often treated as (simply) barriers to good research results that might be surmounted through, for example, even greater standardisation in research and intervention practices (e.g. Malonebeach and Zarit 1991; Ornstein and Gaugler 2012).”

In regards to technology development, I think this mirrors the often limited view that is taken when people design ‘for dementia’, for which it is often acknowledged that peoples wishes and needs may be different, but the result is nonetheless a one-size-fits-all object, that tries to appeal to a rather general audience.

Before reading this problematisation I have come across the term ‘caregiver burden’ so often that I accepted it as a fact. It is quite complex to argue with. Because relieving burden, i.e. depression, anxiety and stress of people must be a good cause and it can therefore be argued that the technologies must go ahead, even if the privacy of the person with dementia may be affected. But it has also been a term I have been critical about as it emphasises the medical view on dementia and it draws on the narrative of loss that surrounds it. It is therefore questionable when it is used as legitimasation for the development of technology as these will be based on this narrative as well and might stand in the way of developing “new and interesting questions” as stated so poignantly by Purkis and Ceci above.

Even though I want to by no means imply that caring can not be considered burdensome and that it has a considerable impact on the caregiver, I start to agree with the above authors that the concept of ‘burden’ needs to be considered carefully when used as legitimisation, especially when used ‘theoretically’ without user enegagement.

But even if we accept ‘burden’ as a concept, how can monitoring technology have an impact? Kenner (2008, 264) argues that “they provide a means to track and control dementia without the immediate presence of caregivers.” Which points towards two important factors: caregiver respite and cost of caregiving.

Reducing caregiver burden is not only an aim in itself. According to some authors it has a beneficial effect on the Quality of Life of people living with dementia, e.g. by delaying move into care facilities as described by McHugh et.al.(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.”

Relieving caregiver burden is a laudable goal, not only in itself, but also with possible implications for the people living with dementia and the wider society. Nonetheless it is a conept we should be critical about when applied generally and without direct user input. In a common current narrative in contemporary academic literature, the concept of burden is widely accepted and used to justify possible breaches of individuals privacy. I question this approach as it needs a more personal and more interactive narraive than the one currently in place. I also believe that caregiver burden may not be ambitious enough as a goal. What about: Creating opportunities for chats and communication? What about: creating memorable moments? What about: bringing back the fun that may have gone lost in the everyday of a relationship? In their critical evaluation of research on burden and ways to reduce it, Purkis and Ceci (2015, 1416) state a lack of new ideas, but say that “researchers have been working with the same set of fairly mundane interventions: brief respite, emotional or social support, and education.” Monitoring as proposed now by simple tracking technologies falls into the category of “brief respite” in my opinion.

Even though Campbell (2008, 71) describes practices much more intrusive and more impactful than  tagging or tracking technologies I want to close with a quote from her chapter, as I think it sums up a very important point. Even though monitoring technologies may have a positive impact on perceived caregiver burden as observed above, it may come with a price:

“Instead it is time to recast the question in light of the proliferation of intrusive surveillance regimes. Why accept intrusive surveillance not only as part of the cost of doing business but also as part of institutional routines that are supposedly supportive and therapeutic?”

Reflection Week 10

This week I have decided on trying to get a stand at the Chaos Communication Congress I planned to attend during Christmas and New Year. With privacy issues and the use of surveillance technology as a case study or starting point for my PhD I want to take the opportunity to discuss these issues with experts in their fields and people interested in privacy. I believe this will inform my coming PhD work and allow me to develop a stronger argument why current concepts and technologies are not sufficient.

I feel I need to make clear that I am not taking a stand against technology per se. I am not even taking a stand against monitoring or tracking technology. But the more I read about this topic, the more I feel that the systems currently available are not sufficient. And I feel they are not open about what needs they are developed for.

Critical voice argue that tracking technology does not keep people safe who wander off on their own. And I think this is an important argument. Even though they may enable people to be found easier, they do not prevent accidents. But they are marketed or perceived to make walking safe. This discrepancy is interesting in istself and tells me that a ‘peace of mind’ technology for carers is needed. One that does not tell him where the person with dementia is, but that he is safe.

The other point I am thinking about a lot is the notion that trackers have to be tiny and hidden away. Which is argued to be done as not to stigmatise the wearer. But I am wondering if one of the reasons might be that we feel uncomfortable about them. What about large, but beautiful or intersting devices? A large brooch that the wearer can see and ask what it does in case he forgets? What about a drone following or even leading someone like a ‘guarding angel’? How people would feel about, interact with such devices might be one interesting question for my upcoming work. Or another Phd for another person.

But I am pleased that I have taken on my own assignment to do something at the Chaos Communication Congress. It has changed my aproach to this PhD and made it more my project again. It has started to make it more creative, more experimental. Which seems to be quite important at this stage, where I lost my inspiration. Even if I do not get interesting data out of it or if I change back to my original topic after, I feel that it has an important decision at this stage.

For the next week I work on the ethics approval of this study, start to plan out more detailed what the different tools will look like and follow up on my attempt to find out more how common the measures I critique with these tools are used in practice.

Monitoring people living with dementia in practice

One of the things I have been trying to find out last week, has been how common monitoring, tracking and tagging devices are used in formal and informal dementia care settings.

In the context of this post ‘monitoring devices’ cover video, audio or other sensors used to observe behaviour. Tracking devices are smartphones or purpose-built devices with inbuild GPS or other location sensors that are used to track a persons location. Tagging devices are body-worn devices that use RFID or other tags that transfer data used to trigger events in the environment, in this context often open or lock doors or alert formal or informal carers if a person is about to leave.

A quick-and-dirty internet survey showed a couple of tracking devices are available for household use, which often share the following features: Most providers offer a range of devices that track children/elderly, pets or items. The tracking devices differ in the way they look, but use GPS for outdoor use and sometimes Bluetooth for indoor use. In addition to the tracking device a mobile app offers access to the data. In some instances the wearer of the device can send out an emergency call.

It seems to me that this is an area in which fraudsters become active and exploit the good will and distress of informal carers. I have read many decriptions of fraudulent companies.I consider this important as it shows the perceived need by caregivers about these devices.

Particularly in the US state-funded systems such as Project Lifesaver are in place, which combine electronic tracking with an infrastructure for quick search. According to their own website 3083 people have been rescued through this system in the 17 years they run. Carr et.al. (2009, 155) evaluated what they call “Silver Alerts” and end their conlusion with warnings regarding the privacy of people enrolled in these schemes:

“Without further examination, we are concerned that the widespread, and what appears to be, unquestioned institution of Silver Alert plans might do harm to elders by removing the civil liberties of those who are the subjects of such alerts and reinforce negative stereotypes of elders.”

According to Age UK, a trial of providing people with sensor wristbands have been provided to users in Scotland and services like the Buddi offer contact to a call center as well as monitoring functions.

In care homes the focus is on the ‘wandering management needs‘ (WanderGuard promotional website), with an emphasis on adaptability. A company called WanderControlSystems interestingly refers not only to the residents safety, but also to the carehomes. (see promotional website)

This is just an overview of the most common types ia of products, others of the same kind or comparable are available in all sectors. What is interesting though is that few studies analyse how and if this products are used. Interest groups such as the Alzheimers Society discuss this topic and give advice, but to my knowledge do not publish figures or statements of products in use.

Gibson et.al. touch on the subject when discussing the use of assistive technology at home. They report on uses such as cameras to monitor when the primary caregiver is out of the house (compare Gibson et.al., 2015, 4)or a novel item with a motion sensor used to notify the caregiver when the person with dementia was leaving the house (compare ibid.) in addition to readily available fall monitors. Interviewing both people with dementia and their partners on their own, they report contradictions in the acceptance of the devices:

“However, whilst accepting such explanations, some people with dementia routinely judged formal AT as an inconvenience to be tolerated for the sake of their carers, rather than as a benefit to themselves.” (ibid)

This falls into the discussion who benefits from technology for dementia: people with dementia themselves or their carers, and people living with dementia as a result of this intervention.

Niemeijer et.al. made observations in a care home to explore how people living with dementia felt towards the monitoring measures taking part there. They again state the lack of engagement with service users in regards to surveillance:

“Often new care technologies such as ST [surveillanve technologies edit BS] are welcomed by care providers as they are perceived to be an improvement compared to the previous situation, even though there is little empirical evidence on whether and how clients might benefit from this technology.” (Niemeijer et.al., 2015, 316)

They conclude that technology: “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. ” (ibid, 318)

Wigg compared the experiences in two carehomes, which framed ‘wandering’ differently. While at one carehome, given the pseudonym ‘Pine Tree House’ “the pathologisation of wandering established a legitimisation for locked doors.” (Wigg, 2010, 298), at the other wandering was framed differently:  “Wandering was redefined as a necessary means of exercise for those living with anxiety because of illness.” (ibid, 295) In the second care home, monitoring took place as caregivers were alerted if someone left the care home, who was then accompagnied by a caergiver. (compare Wigg, 2010, 295) Comparing these two approaches Wigg comes to the conclusion:

“By comparing the technologies of locked doors and motion detectors in context, this paper shows that distinctions exist between surveillance technologies that chiefly engage in social control and surveillance technologies that encourage greater independence and interpersonal interaction between staff and resident.” (Wigg, 2010, 299)

Comparing surveillance technologies directly in regards to the use of physical restraints in regards to Quality of Life, teBoekhorst et.al. (2013, 362) come to the conlusion that the use of surveillance technology does not necesarily have the wanted effect: “Although surveillance technology may give residents with dementia more freedom of movement, it does not automatically provide them with a better quality of life.” This may be partly due to the observation that suveillance did not replace physical restraints: “Consequently, the results showed that the introduction of surveillance technology did not have a significant effect on the use of physical restraints.” (ibid, 361)

Robinson et.al. undertook a systematic review and qualitative study particularly discussing the balance between perceived risk in regards to the rights of the individual. They observed an interesting discrepancy between formal carers and informal carers. While formal carers in care home settings valued the rights to safety higher than the right to freedom, informal carers such as partners and next of kin took the opposite view:” What was often viewed as an acceptable risk by family carers was considered unacceptable and potentially dangerous by professional carers.” (Robinson et.al., 2007, 396) An underlying factor in this is the perceived impact of public opinion for formal carers: “All participants felt society would regard them as negligent if they didn’t operate a locked door policy in nursing homes and on hospital wards.” (ibid, 395) People living with dementia in contrast stated that they did not feel the need for monitoring technologies: “In terms of managing risk, people with dementia said they would not want to be monitored
all of the time, although this depended to some extent on who was doing the monitoring (e.g. spouse or social services).” (ibid, 400)

My research has shown that products to monitor or tag people living with dementia are available, that they are currently developed in academic contexts, and that their ethical implications are widely discussed. But little attention has been given to the way these technologies are used and which impact they have in practice. Especially the voice of people living with dementia is underrepresented.

The lack of surveys on the effectiveness of monitoring practices falls within the greater discussion on surveillance as for example observed by Monehan (2008, 9):

“If we take the question ‘Do they work?’ on its own terms, we are led to other questions: Why are there so few evaluation studies? And why are more independent evaluation studies not funded? “

Her answer is twofold: a hesitance to engage with the topic as “people are afraid to hear that they might not work” and the underlying “emerging neoliberal sensibilities and structures.” (Monahan, 2008, 9)

I cannot at this stage evaluate whether this applies to the micro-cosmos of surveillance in dementia care. But I will look deeper into it, trying to find more info on the commonness of these practices and the lack of engagement with the use of these. But Monahans quote also leads to another topic I hope to tackle soon: where does monitoring practices in dementia care touch upon wider issues about surveillance in society?