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 (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 (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.


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