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 (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 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, 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 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, 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 (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 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, 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?



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