People with dementia or other kinds of cognitive failure are at risk of getting lost when they are out walking. Depending on weather conditions, this is potentially a life-threatening risk. Electronic tracking is proposed as a tool to allow safe walking, and a help for the caregivers to locate a missing care recipient in the event of getting lost. Many trials of and inquiries into electronic tracking have appeared in recent years. This paper makes a preliminary literature review and reports on a local trial. There are interesting dierences in the level of technical diculties and the drop-out rates of users. A great benet for many users, many obstacles make it hard to use the technology for others. Too little is known about when the technology is appropriate and how to make it work in practice. We discuss several directions for further research.
People with dementia or other types of cognitive impairment form a large, and growing group. The group is diverse, with various levels of functioning, physically as well as cognitively, and they require very dierent levels of care. Many, especially in an earlier phase of dementia, are capable of engaging in normal activities and manage themselves most of the time.
One signicant risk faced by this group is that of getting lost and failing to
nd one’s way home. This is often, but not exclusively, related to wandering, a
condition commonly found in dementia, where the patient embarks on an erratic
and seemingly purpose-less walk. It is estimated that 2025% of
communitydwelling patients with dementia have some level of wandering behaviour [
Copyright c 2014 by the paper’s authors. Copying permitted for private and academic purposes.
Searches for missing elders with dementia are regularly reported in the press, and
occasionally the outcome is fatal, often as a result of exposure and hypothermia.
Research shows that among people with the same level of dementia, those who
have gone lost in the past are much more likely to be admitted to care homes
[
The risk of getting lost can be mitigated in dierent ways. A wide range of methods aim primarily to avoid the person moving out-doors on their own. An extreme solution is a closed ward with locked doors. Softer approaches include music therapy and activities aiming to provide an alternative to lone walking. A direct, positive technique is organised walking groups.
Most of the solutions are based on the assumption, implicit or explicit, that the out-door wandering or walking is the problem to be solved or prevented. However, many people with cognitive impairment, their carers, and next-of-kin, report that walking is a favourite past-time, and many want to walk alone. Such an attitude seems obvious to a large population who enjoy walking and rambling without any clear signs of cognitive impairment. What is sometimes called wandering with a negative stigma when elderly subjects are concerned, is called rambling when younger subjects are concerned and seen as a very healthy, positive activity.
Electronic tracking, commonly using GPS, is a solution aiming to promote
safe and independent walking. The user carries an electronic device, allowing a
formal or informal carer to track him or her remotely. Thus, the user is able to
walk freely and alone. In the event of getting lost, the carer can locate the user
and come to assist. Being a clear breech of privacy, electronic tracking is
controversial, but some users nd it freedom enhancing [
Many local councils have tested GPS tracking in recent years, including a local trial led by the municipality of ¯lesund in collaboration with surrounding councils. Reading the existing literature, one can easily get the impression of a very mature technology ready for immediate use, at least as soon as the ethical considerations have been properly debated and everybody involved have consented. That is not quite in line with our experience in ¯lesund. Out of 16 people joining the trial, only ve were still using the technology after six months. When we started on the research for this paper, we wanted to check if our impression of the literature as very positive to the current state of the technology was accurate, or if the technical and practical diculties that we saw in practice are also reported in the research literature.
In this paper, we make a preliminary literature review covering both engineering and social/health science, to identify known technical, practical, and ethical challenges to electronic tracking of people with cognitive impairment. In this context, we report on the local trial, and we discuss possible approaches to overcome known challenges. The problems transcend the boundaries between the disciplines of engineering and health care, and so must the solutions.
The literature review is based on a limited, but systematic search. The search was scaled to be manageable with the available time and manpower and to provide a preliminary overview and collect experience with search strategies. Hopefully, future reviews will cover a wider time span and additional databases. We search two bibliographic databases, IEEExplore for electronic and computer engineering, and Cinahl Complete for health related research. The search is restricted to 20072014. 2.1
We search for literature in the selected databases. The target for our search can be dened in terms of user group, problem, and class of solutions.
Good search words are generally hard to nd, and the taxonomies and thesauruses used by the databases we considered oered little help. The term ‘cognitive impairment’ is little used, especially in the technical literature. Authors tend to use well-known subgroups to exemplify (e.g. Alzheimer patients). To capture as much as possible of the group, we opted for the following search substring: elder* OR dementia OR alzheimer Restricting the problem and the solution is harder. The solution is probably most correctly described as location tracking, but many authors write just ‘tracking’, or ‘GPS tracking’ if GPS is used for the purpose. This risks confusion with activity tracking, physiological monitoring, etc. In the end, we decided to use the following search string and lter out false positives manually: track* AND (elder* OR dementia OR alzheimer) 2.2
We conducted a two-stage ltering, with the rst two authors acting as independent referees. The rst stage was based on title and abstract only. The second stage was based on full-text copies of the articles. The two referees read and classied the papers independently, and discussed the classication to agree on a conclusion. Consensus was obtained in almost all cases in the rst stage and every case in the second stage. When no clear-cut agreement was found in the rst stage, we erred on the side of inclusion, essentially postponing the decision for the full-text review.
The following inclusion/exclusion criteria were used:
Include papers which consider outdoor location tracking of users who can be described (loosely) as either patients, elderly, or people with cognitive impairment. We include papers were the given user group is addressed only as a potential user group.
Exclude papers which focus on one of the following areas, unless they also explicitly and unambiguously address outdoor location tracking: 1. indoor tracking. 2. activity or motion tracking. 3. physiological tracking. 4. fall detection. 5. navigation or way-nding.
6. robotics incl. automatic wheelchairs.
During the second stage of ltering, we also classied the papers on three points:
2. Are ethical issues considered? 3. Are technical issues considered? We had originally intended a more detailed classication of ethical and technical considerations, but because almost no paper tted well with the expected categories, this was postponed to the more detailed review. With respect to the use of testing, there are four main categories:
A priori we failed to make the distinction between usability testing and other kinds of testing, and only categories 1, 3, and 4 were included. Category 2 was added during the review to handle papers which did not t elsewhere. 3
Database
Hits First ltering Fulltext ltering IEEExplore 221 20 Cinahl Complete 162 22
We conducted the search and ltering as described above. The number of candidate papers after each stage is shown in Table 1. A total of 28 papers were included for further review, and these are listed in Table 2.
We have colour coded the papers. The two grey papers, [
Among the papers excluded based on the full text, there are numerous papers
on tracking of elderly or cognitively impaired users for dierent purposes, such
as indoor tracking, analysis of mobility, or wandering detection. There were
also papers on tracking of other user groups, including one on pet tracking.
Finally, one paper [
Our review identied one previous review paper, [
We have reviewed the 28 relevant papers with respect to three topics: ethics, technical challenges, and the authors’ attitude to the technology. The opinion papers are naturally only relevant to the last topic, so we leave them out for the rst two. 4.1
Privacy is the main ethical concern, addressed virtually by every relevant paper
from Cinahl Complete. Users may feel controlled by the tracking device [
Electronic tracking has a dual and ambiguous eect in terms of independence
and autonomy. For some users, the alternative to electronic tracking is to be
conned indoors, and in the most extensive trial that we found [
Paper Relevance/Testing
Ethics
Technology
Comment Prototype Power conservation Cryptography New product
Power conservation Bandwidth
No opinion Considers pri- No opinion vacy
Challenges noted Challenges identied Possible opin- Power-eciency ion Mentioned Improvements Social network
proposed
Mentioned Improvements Social network [
proposed Considers pri- No opinion Privacy protection vacy Negative
No opinion Before using GPS, my husband allowed me to go downtown by myself.
Now I can only go there of (sic) taking my GPS.
What is the greater breach of rights, electronic surveillance or restriction and restraint in care homes?
The authors reporting on studies not using trials of the technology appear
to tend towards the view of tracking technology as a restraint. The three trials
reported in our sample, in contrast, report that independence and freedom is
increased, at least for a signicant number of users. In an older trial [
Besides the privacy and civil liberties issue, a couple of other ethical concerns are raised:
2. There may be stigma associated with wearing a tracking device [
Dr. Landau’s groups in Israºl is behind ve of the trial-less research
papers, addressing a range of questions relating to ethics using both quantitative
and qualitative studies with subjects including both professional carers,
family caregivers, and cognitively intact elders. All this work leads into a set of
recommendations [
The papers from IEEExplore hardly ever discuss ethical issues. They might
mention that ethical problems exist [
A large number of technical challenges and limitations are mentioned in the
literature:
1. cost of the device [
Only four of the papers report on any kind of usability testing or observation.
Only preliminary trials with informal observations are reported in [
None of the papers make any clear statements about the maturity of the technology. Since none of the above mentioned challenges are presented as potential show-stoppers, one can easily get the impression that the technology is mature and easy to use. 4.3
Finally, we wanted to gauge authors’ attitude in favour of or against the use of technology. This proved dicult, as no strong and obvious indications could be found in the research papers. With a large sample, searching more databases, one might be able to nd indicators through a structured application of text analysis. Only the four opinion and the single analysis paper (white entries in Table 2) voiced clear opinions, three in favour and two against. 5
In stark contrast to the relatively positive and encouraging impression from the literature, experience from the local trial are negative by comparison. Deployment of the tracking technology and integration into the daily routine of the # Reasons Category 1 User felt monitored. Too many lights. UI + 2 Inconvenient with extra device in addition to mobile phone. Char- Battery, Extra ging is a hassle. No great need for tracking. device, + 3 Poor speak/listen function. Uncertain whether an alarm has been UI, Extra sent. Extra device to bring. device 4 Next-of-kin did not have time to follow up. Hassle to take care of Procedures, battery and charging, and make the user bring the device. Battery 5 Worked badly with the informal carer who would use the system. Procedures, Was stressed when the alarm did not respond immediately and Technical there was a lag in the tracking. 6 User pushed the alarm button all the time, a lot of noise for the UI? receiver. 7 The user became too ill to go out alone. Health 8 Next-of-kin did not have time to assist. A lot of hassle with char- Procedure, ging and to remember bringing the device. Battery 9 The user got electric shock. The mains plug was broken. Next-of- UI, Technical kin and the user found that the device was insuciently developed for the target group. Too many buttons on the device, unreliable alarm functionality 10 The home care service found charging too much of a hassle. Dif- Procedures cult to nd good procedures to let the user remember to bring the device. 11 Insucient mobile phone coverage to track via SMS, and to val- Technical, UI idate the operation of the alarm function. Impossible to phone to the device. (Was able to track the device when it was out-doors.) users and their carers proves very dicult. Out of the sixteen GPS trackers deployed at the start of the project, only ve were still in use after six months. The eleven drop-out cases are listed in Table 3.
The trial was conducted during 2013 in the region of Sunnmłre. The users would be using the tracker for a six-month period. Data were collected using two interviews with the next-of-kin or informal carers, and where possible, also the cognitively impaired user person. One interview was done prior to the trial, without the users having to commit to taking part in the trial beforehand. This interview also served to provide information about the service and the trial. The second interview aimed to evaluate the trial and was arranged after the trial was complete. A total of 22 users took part in the original interviews, 16 of whom went on to take part in the trial. For the six users who did not go on to the trial, the family and the project manager agreed that the tracking service did not suit the user’s needs. Five users kept using the tracker for the full six-month period. Of the eleven users who dropped out, ve failed to take part in the evaluation interview, but partial data about their experience and reasons for dropping out was collected informally via phone or when the equipment was returned.
Both interviews where transcribed and subjected to a qualitative, inductive
content analysis. Further information about the trial can be found in [
As we can see, the reasons given for not using the GPS tracker are composite in most cases. Yet, there are a few classes of problems which seems to explain most of the drop-outs. We have tried to categorise the reasons in the third column of the table.
UI (user interface) several users had problems which could seemingly easily be resolved with simple modications to the user interface.
Technical several users noted functional problems, incl. problems with tracking, reception, or the alarm. This is a more diverse group than UI problems and have less obvious solutions.
Extra Device several users disliked the extra device to be carried, an issue which we also found reported in the literature.
Procedures reliable use depends not only on the technical system but also on good habits and interplay between the user and the formal and informal carers. This category may cover both diculties in incorporating the technology in the daily routines, and insucient time on the carers’ part. Battery the need for frequent charging was impractical for many users. Health inevitably, some patients will give up using the technology because the health deteriorates. When they are no longer able to go outside, there is no need for the tracker.
Generally, the problems match problems reported in the literature, or they are fairly obvious and natural to expect. What is surprising is that the problems are so severe that they make two thirds of the respondents give up.
The users include both users in care homes, users living with a spouse, and users living alone with a family member being responsible for the tracker service. The ve users who completed the trial include two living with a spouse and three in care homes. For some of the users in care homes, their liberty depends on the sta on duty. Some members of sta are reluctant to use the tracker service. The resident is only allowed to leave the care home if there is sta on duty comfortable with the technology.
Some of the problems have obvious solutions and others do not. Clearly, the
health related reasons are inevitable, but they only accounted for one out of our
eleven cases. In contrast, two obvious alternatives exist for a user who dislikes
the extra device. Tracking functionality could easily be integrated in an app
running on a smart phone, for users of such phones. Alternatively, a worn device
could be used, for instance with the electronics sown into a coat. Each proposal
will require its own ethical assessment. Several initiatives exist to develop mobile
phone apps to track people with cognitive impairments [
Problems relating to procedures are much more fundamental than the technical problems, and the solutions are not obvious. Part of the problem is that user manuals describe only the technical features. They do not explain how to make the product useful in real life. Often it is possible to work around technical limitations, such as the short battery life, as an added organisational challenge. In contrast, no technical innovation can dissolve the need for good, practical routines to make the system work in daily life. The solutions are likely to grow out of trial and error over some time.
Problems concerning charging are well-known in the literature, and potentially diverse. Good procedures are needed to get the batteries charged regularly. Improvements to the charger design might make the task easier and more manageable.
The user interface is a particularly interesting category. A boon for one user can be a show-stopper for others. Take the alarm button for instance. It is obviously useful for a user with sucient cognitive ability to use it well. However, for one user in the trial, abuse prevented further use of the system.
The participants in ¯lesund (and also in [
Given the limited extent of our studies, with relatively few relevant articles discovered and few users in the trial, our discussion seeks questions for further research, rather than answers and nal solutions.
Tracking technology has proved very useful for a considerable group of users. However, it does not work for everyone, and while the literature can oer comprehensive advice on how to handle ethical issues, there is very little to be found on the technical and practical issues. 6.1
Why does our trial have a much higher drop-out rate than trials reported in
the literature? We have no certain answer to this question. The authors [
None of the trials give any details about the cognitive impairment of the
participants. It is well known that later stages of dementia makes it very hard,
in general, to accept new solutions or new habits, and this (unsurprisingly)
appears to be the case also for GPS tracking in particular. There is evidence [
We also found a discrepancy in the ethical viewpoints. In the literature, the dominant view is of tracking as a form of restraint. In our trial, the dominant view of users and informal carers was that tracking gives greater freedom. This is not necessarily a dierence in the attitude. It could very well be a dierence in the a priori situation. The users who report increasing independence appear be those who have reached a point where independent wandering is no longer an option. Thus the alternatives has become either tracking or connement, with tracking as the lesser restraint. Users who are well enough to walk on their own, albeit with some risk, can only be expected to experience greater safety and/or less privacy.
It is tempting to hypothesise that drop-out cases in our trials have had more advanced dementia than what the typical subject in the other trials. Such a hypothesis could explain both the dierence views on tracking as freedom enhancing or restraining, and the higher drop-out rates. However, there is no support for this hypothesis in the our data. The only feature characterising successful use of the tracker, is a carer with outstanding motivation and will to succeed. 6.2
As noted electronic tracking is commonly a viewed as a restraint. As a means of surveillance it is an intrusion on privacy, and justly controversial. However, there is the the opposing view that tracking gives added freedom, voiced by users themselves, because the alternative is a care home which is perceived as more restraining.
This conict is evident in a couple of cases with users in care homes. Locking doors to keep residents inside is a well established practice, and rarely up for debate. Many members of sta are reluctant to take up the new technology, which could allow the freedom for residents to move outside with acceptable risk. We have not inquired into the reasons for this reluctance, it could be either ethical concerns or general technophobia.
We should be very concerned that the wide-spread practice of locking vulnerable people in is hardly ever up for debate, while, at the same time, surveillance is controversial to such an extent that one may have to search for legal loop-holes to deploy it. Is surveillance really a greater intrusion than indoor connement?
In general, one should not expect ethical considerations to generalise across cultures. However, there is a certain ethical awareness, which may generalise. Compromises are necessary; dierent forms of restraints are used for safety reasons. Restraint is bad, but safety is good, hence the compromise. It is important to be aware of all of these compromises, and they should be reassess continuously as innovation opens up new opportunities. New solutions must not be resisted simply because they are intrusive in an absolute sense. Instead, they should be compared to existing intrusions, and the best overall compromise should be chosen from the user’s viewpoint. 6.3
Engineering and health science literature take dierent attitudes to problems and technical aws, and there is a gap to ll between the disciplines. In the health sciences such problems are frequently used as arguments against the use of technology. In engineering such problems are merely research problems. They require solutions, and we can nd them.
None of the papers we have found put the ethical and technical short-comings into their full context. Engineering researchers do not involve users when they gather requirements or dene the problems, and involvement of users in health science is restricted to evaluating technology as is, rather than expressing visions and desires for tomorrow.
These problems have been pointed in the more general context of eHealth
technologies [
The present paper is the result of the newly founded Arena for Learning about Welfare Technology (ALV), which is a collaboration between the Municipality of ¯lesund, ¯lesund University College, NAV Assistive Technology, and the Centre of Care Research Central Norway. It spans three faculties within the college and both health administration, IT services, and the Public Property and Housing Services within the local council. Having already established weekly meetings and with a demonstration and laboratory at currently under construction, we hope to be able to establish a holistic research and development process. One may call it an experimental lab, think tank, demonstration at, or innovation room. Even though these words may bring up dierent associations, they all spring out of the same philosophy, that innovation is the result of people with dierent ideas getting together, thinking together, and working hands-on with real problems and real gadgets.
The lack of holism is also evident in every-day administrative processes. Technology for use in care homes often require built-in facilities, such as cabling. Too often, the civil engineers are on their own in the planning and construction of a building, lacking the users’ understanding of how the rooms are going to be used and lacking, for instance, IT services’ understanding of how to enable technological solution. The holistic thinking is missing from most educational services, in research, and in the government organisations. 6.4
A necessary condition for the holistic approach is eective involvement of the
user. Although user involvement is a widely recognised virtue, with terms such
as user-centred design in engineering and user-centred development in software
engineering [
For nurses and nursing researchers, user-centricity is of course central to their professionalism. Systematic processes for user-centric design of technology and services are, in contrast, are not found in a nursing curriculum. In fact, technology is sometimes seen as a threat to human- and user-centric care.
Even in engineering, it is easier to grasp user-centricity as an ideal or a general attitude, more than as a structured methodology to give concrete help in the development of new systems. An amalgamation of development lifecycles from engineering, user understanding from nursing, and innovation processes from innovation and entrepreneurship is a very promising way forward. 6.5
Tracking technology can be used in many dierent ways, and existing trials and surveys of health care applications have failed to address this. Common solutions to ensure safety in face of wandering is a straight-forward surveillance system. The care recipient carries a tracker which reports the location to a server (via the mobile phone network) at regular intervals. The care giver can contact the server to see the reported locations at any time, typically via a web page, but other means are possible. No surprise that these systems make us think of big brother.
Such a surveillance system is a signicant intrusion on privacy. It is always on, and the carer can snoop at any time, independently of the users situation and need. The engineering literature discuss less intrusive solutions based on the same tracking technology.
Geo-fencing is mentioned by several engineering authors as well as [
Many of the technical papers consider wandering detection, i.e. articial intelligence aiming to identify wandering behaviour, such as an erratic walking route or deviation from habit or plan. Wandering detection has several applications, but one application is similar to the use of geo-fence suggested above. When a wandering state is detected, an alarm can be raised and full tracking surveillance enabled.
Either geo-fencing or wandering detection can be used to limit the surveillance and prevent abuse (or at list reduce the risk of abuse). It would also be possible to allow tracking only after the care recipient has been out of the house for a certain period of time. I.e. if the user is out walking for a reasonable duration, no surveillance is possible. If he does not return on time, on the other hand, tracking is enabled. All of these solutions would preserve privacy in many every-day situations while still allowing tracking in the event of an incident. Admittedly, there is still a risk that the user may feel controlled and monitored, even if actual surveillance is blocked.
The users in our trial did not have homogeneous needs. Some of the dropout users had specic needs for which the service was ill-suited. In particular, one couple wanted to use the GPS tracker for travels abroad. Firstly, there is the challenge of nding one’s way through the airport, which is an indoor environment for which GPS is ill-suited. Secondly, there is the use case where the couple are walking together, and the cognitively impaired user gets lost in a crowd. The carer can track via his/her mobile phone, but this is based on SMS which can be slow and has no guarantees. In practice, the lag could be several minutes, which was not acceptable to the users. This is seems to be use cases tacitly ignored both by the developers and procurers. 7
Having reviewed literature on electronic tracking for users with cognitive impairment and observed the results of a local trial, we note that many important questions go unanswered or insuciently answered. Technology uptake is slow, and it does not always have the expected impact or benet in practice. The literature answers neither why, nor how one could do better.
Many of the problems fall in a gap between engineering research and health sciences. A holistic approach is needed to develop technology and services which work together for real users. More research is required to establish structured methodologies for user-centric development.