Abstract
Introduction
Wandering is a behavioural disorder, which occurs in Alzheimer’s disease or other dementia. People who wander are at risk of physical harm and untimely death. Moreover, wandering behaviour causes a lot of stress to the caregivers. In the last few years, different geolocation devices have been developed in order to minimise risk and manage unsafe wandering. These detection systems rarely meet patients and caregivers’ needs because they are not involved in the devices building process.
Aim
The aim is to explore the needs and perceptions of wandering persons and their caregivers towards existing tracking devices as well as their acceptability and usability. This paper reports a dyad case.
Materials
The tracking system tested is presented as a mobile Global Positioning System (GPS) receiver-shaped, including function of telephony and data transfer via GSM/GPRS.
Method
Dyad patient/caregiver expressed their needs and perceptions towards tracking devices and gave their impressions about the functioning of the tested device at the end of the test.
Results
The patient focused on the device’s shape which he found too voluminous and unaesthetic, and was unable to give an opinion about the device’s functioning. The spouse highlighted malfunctions and usage difficulties, which made the device not appropriate to her needs.
Conclusion
Involving end-users in the co-design of new technologies is necessary for building tailored devices. Moreover, in this area of dementia care, the person-centred approach is essential to a tailored wandering management.
Résumé
Introduction
L’errance d’une personne souffrant de troubles cognitifs est une source de stress pour son entourage et l’expose à un risque d’accidents, voire de mortalité prématurée. De nombreux dispositifs de géolocalisation ont été développés ces dernières années pour limiter ces risques et éviter le confinement de la personne à son domicile, mais ils sont encore insuffisamment évalués par les usagers.
Objectif
L’objectif est de connaître les besoins et attentes des personnes déambulantes et de leurs aidants vis-à-vis des systèmes de géolocalisation existants et de tester leur acceptabilité et leur utilisabilité. Ce papier expose le cas d’un tandem patient–aidant.
Matériel
Le système de suivi à distance testé se présente sous la forme d’un terminal mobile intégrant un récepteur Global Positioning System (GPS) et des fonctions de téléphonie et de transfert de données via les réseaux GSM/GPRS.
Méthode
Le tandem patient–aidant a évoqué ses besoins et ses attentes vis-à-vis de systèmes de géolocalisation et, à la fin du test, a donné son appréciation du dispositif.
Résultats
Le patient s’est focalisé sur le design du dispositif qu’il trouve trop volumineux et peu esthétique et a été incapable de donner un avis sur son fonctionnement. Son épouse a mis l’accent sur des dysfonctionnements ou des difficultés d’utilisation qui rendent le dispositif testé peu approprié à ses besoins.
Conclusion
L’implication des utilisateurs finaux dans la co-conception des technologies est nécessaire pour construire des dispositifs adaptés. De plus, dans la prise en charge de ce trouble, l’approche centrée sur le patient est essentielle.
1
English version
1.1
Introduction
Wandering is a behavioural disorder which occurs in Alzheimer’s disease or related disorders. The causes are unknown. The prevalence which is difficult to estimate might be close to 12.6% among community-dwelling people with dementia in France . People who wander are prone to straying when outdoors and are at risk of physical harm (falls, fractures) and untimely death. The safety of missing elderly persons may be seriously jeopardized if caretakers cannot locate them within the “golden 24 hours” . Moreover, wandering behaviour may pose a source of distress to caregivers and may influence their decision to place their proxy in institutional care .
A clear definition and understanding of this disorder are lacking. Strategies including different non-pharmacological interventions (behavioural therapy, exercises, music therapy, environmental modifications, etc.) are implemented. 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.
These devices allow wandering people to avoid confinement at home and thus promote autonomy. However, these devices, largely commercialized with various shapes (wristwatch, cell phone, etc.), have been developed without enough knowledge of end-users’ needs.
Moreover, the acceptability and the usability of these products have rarely been assessed , and ethical issues associated with their use are raised . The underlined arguments are the breach of privacy and dignity of the person and the loss of liberty. Another raised issue is the capacity to consent. Conflicting ethical principles are discussed in relations to tracking devices. These include tensions between the principles of beneficence (“doing good”) and non-maleficence (“avoiding harm”), and between safety and rights to autonomy, dignity and privacy, that is the balance between societal/legal values versus person-centred/individual values .
There are not many studies focused on perceptions of gerontechnologies by informal caregivers, patients and professionals. The ALICE study reports the views, perceptions and expectations of family caregivers of patients suffering from cognitive disorders regarding 14 innovative technologies including electronic tracking system. The most appreciated technology, the tracking device, collected the greatest number of favourable responses (53.3%). To our knowledge, no study has reported patients’ views so far.
In the Broca Hospital, we have initiated the TANDEM-RNTS project aimed at developing a computerized device, tailored to people suffering from cognitive disorders, acting as home assistant in order to improve the quality of life of people with Alzheimer’s disease and their family caregivers. In addition to different services using technologies such as web-conference or computerized cognitive stimulation programmes, this project includes an electronic tracking device. Before integrating these services into a platform (TANDEM platform), this device is tested by people interested in such a tool.
This preliminary work reports the opinion of a dyad patient/caregiver on the electronic tracking devices’ concept and on the functioning of the tested device after using it.
1.2
Methods
1.2.1
Case study
1.2.1.1
Introduction of Mr B.
Mr B., 84 years old, is an artist and lives at home with his spouse. He suffers from Alzheimer’s disease at a moderate stage (MMSE 12/30). He essentially complains of anxiety related to the lack of creative thinking. Since going out for a walk allows him to stimulate his creative capacities, he still goes out alone for several hours every day in the hope to find again the energy required to create new art pieces. He also notices that walking reduces his anxiety. The urges to go out are sudden, unpredictable and imperative. These outings may take place in the evening or even in the night. If the family opposes or tries to postpone the outing, Mr B. becomes more anxious and more aggressive, in particular verbally. He admits that the need of wandering is immoderate and that he gets lost outdoors.
1.2.1.2
Introduction of Mrs B.
In his daily life, Mr B. is supported by his wife and by a personal care attendant. Mrs B., 68 years old, worries about her husband’s untimely outings, especially during the night. However, she does not want to oppose because Mr B. is very determined and she wants to respect his independence and his willingness. She is very interested in electronic tracking devices and is motivated to test our device.
1.2.2
Electronic tracking device functionality
The device is a Global Positioning System (GPS) receiver and a mobile phone sit side-by-side in the same box. It is in the shape of a mobile phone attached to the person with a belt clip ( Fig. 1 ). The unit uses the GPS to determine the precise location of the person. At regular intervals, the phone sends a text message via SMS, containing the data from the GPS receiver. The recorded location data is transmitted to an Internet-connected computer, using a cellular (GPRS) embedded in the unit.
The device’s functions are the following:
- •
geolocation alarms (SMS via GSM or TCP_IP via GPRS):
- ∘
voluntary alarm (SOS button),
- ∘
automatic alarm when the person goes beyond a pre-set safety zone,
- ∘
automatic alarm detecting long inactivity,
- ∘
automatic alarm detecting falls.
The terminal transmits information (day and hour of the alert and GPS coordinates) to a platform of services (developed by CGx-Systems). Via the GSM/GPRS channel, this information is sent, unrefined, to the caregiver’s mobile phone and to the TANDEM platform’s Web server (via e-mail/SMTP channel).
After recording into a database, the alerts are accessible through the Internet and are downloaded with a Web browser into the caregiver’s computer. This one visualizes the person’s location as well as the route line. These two pieces of information are automatically downloaded from the map company « Google Maps™ », and allow activating an alert process and making search operation easier.
Among these functionalities, we have exclusively tested the voluntary alarm (SOS button) activated by the patient and the “geofencing” (automatic alert when the person goes beyond a pre-set safety zone predefined with the caregiver at the beginning of the test).
1.2.3
Evaluation process
Before the beginning of the test, we explained the process to the dyad patient/caregiver. Firstly, they signed the consent after they had accepted to participate in the study. Secondly, we interviewed them about their needs and expectations. Thirdly, the system functioning was explicated to them; the training lasted one hour. Then, we lent them the device for one month. At the end of the test period, the dyad gave their opinion about the device.
1.3
Results
Results are summarized in Table 1 .
| Patient | Caregiver | ||
|---|---|---|---|
| Before the test | After the test | Before the test | After the test |
| Removable system whenever he wants Reassurance of his wife Science progress | Too voluminous Unaesthetic | Non removable system Not subscription to an assistance platform Management of her husband’s wandering on her own | Too voluminous Removable system Inaccuracy of the coordinates Absence of geotracking Battery range |
1.3.1
Opinion before the test
Mr B. agreed with the principle of carrying an electronic tracking device to reassure his wife and with the idea of testing different devices in the sake of science progress, provided that he could put and take off the device whenever he liked. In particular, he had already tested a device in the shape of a watch-bracelet and expressed his reluctance regarding this device locked to his wrist without being able to remove it.
He was more in favour of a device carried on the belt with a clip (similar to the proposed device), which he could put and remove on his own.
Mrs B., found that the device in the shape of a watch-bracelet locked to the wrist met her needs because her husband could not remove it. However, this system was disappointing because it worked wrong. The dyad quickly abandoned it.
In addition, Mrs B. pointed out the obligation to subscribe to an assistance platform. Mrs B. would like to have the possibility to buy the device and manage by herself her husband’s wandering.
1.3.2
Opinion after the test
The test lasted only one day. Indeed, Mr B. did not bear to carry the device for a long time. He viewed it as too voluminous and not so aesthetic (“ I find it ugly ”, “ I find it unattractive ”). He admitted that he went outside and forgot to put on the device. He knew that he had got lost during this day but did not remember the way of which his wife had come to pick him up.
Mrs B. corroborated that she was not in favour of a device, which could be removed insofar as this one had no utility if her husband went out without carrying it. According to her, this aspect was a main obstacle during the test: “ I was frequently looking for the device because my husband did not want to put it on ”; “ it was very difficult to manage ”. Moreover, her husband could loose it: “ He could leave it anywhere. If the device is put down on the floor or clearly visible in his pocket, the risk was that people, not knowing what it is, took it up and went away with it”. Mrs B. also regarded the device as being too voluminous.
An inconvenience, noticed at the beginning of the experiment, referred to the necessity to use the Internet in order to get the coordinates if her husband got lost. As she was not competent in informatics, Mrs B. had to rely on the personal care attendant: “ She logs very easily and communicates information to me”. Thus, the situation was not under Mrs B.’s control. However, she admitted that initial training and sufficient practice allowed her to compensate for this incompetence.
The other limits reported by Mrs B. was the inaccuracy of the coordinates as well as the impossibility of a continuous monitoring when the person got lost. “ The persons are moving… if the device is not accurate you cannot find them”. In addition: “ when yourself you are outdoors looking for your proxy, you have not a computer with you”. “You must have a cell phone with a connection to Internet but of course you must know how to use it”.
Moreover, when Mr B. left the security area specified during this day, the alert was constantly activated because the system updated the coordinates of Mr B. location. Since Mr B. wandered during many hours, the battery was quickly discharged.Thus, Mrs B. convinced her husband to try a third device in the shape of watch-bracelet locked to his wrist.
1.4
Discussion
To our knowledge, for the first time in the literature, this paper reports the evaluation of an electronic tracking device by the patient and the caregiver.
Although this evaluation only lasted one day, it provided interesting information on both technical issues and device acceptability by the persons.
Technically, changes must be done in order to improve the efficiency of the device. It is important to collect the opinion of the patients and the informal caregivers regarding the technological objects proposed to them in the dynamic co-design process involving end-users and industrial partners.
Indeed, the tested device in our project seems to be too voluminous and inadequately autonomous in case of repeated alerts. People need to have a cell phone and at home a computer with the Internet access. An operational and efficient use of such a system implies that the caregiver is conversant with the use of Internet. This tested device is aimed at people accustomed to new technologies or sufficiently interested to motivate a learning process. While a common misconception is that older adults are averse to change and unwilling to use new technologies such as computers or the Internet, assessments of older adults generally show positive attitudes and express willingness to learn to use these devices .
On the other hand, the positive issue is that our device does not necessitate a teleassistance platform.
In addition, the evaluation underlined the necessity of integrating the “tracking” function (continuous location) which proved to be useful during the searching phase. Ogawa et al. performed a rescue test with rescue time measured as the time required for the caregiver to find the subject. The authors showed that the mean rescue time was 13 minutes.
This study also gives very useful information on tracking device’s acceptability by the patient and his caregiver. The interesting point of the study is the report of the patient’s point of view. It seems essential to collect the disabled person’s opinion if he/she is able to express it by his/her speech or behaviour. With the progress of the disease, the feedback on acceptability and usability tests of technological devices is hard to understand. On the one hand, the adaptation and learning ability decreases; on the other hand, the anosognosy and the judgment disorders do not allow us to obtain an objective point of view.
In this study, the patient suffers from Alzheimer’s disease at a moderate stage and he is able to express his opinion and to make choices. He accepts to carry the device essentially to please his wife and to reassure her. However, he wants to keep the control of the device’s use; in particular, the possibility to carry it or not as he likes. That is the common opinion of the end-users regarding new technologies. Globally, the patient regards the device as being a limit rather than an increase of freedom of movement, whereas his wife has the opposite opinion. This discrepancy also exists about the kind of device: the patient is in favour of a removable device attached to the belt with a clip while the caregiver privileges a locked device. This point correlates dissensions between the caregiver and the patient.
However, concerning the device’s shape, their points of view converge. According to the patient and the caregiver, the device’s appearance must not be stigmatising in order not to associate it to a restriction of movement freedom (prisoner) or to a handicap, but, on the contrary, the device must be unnoticeable and must evoke autonomy.
In this study, the patient’s opinion prevailed because he decided to privilege his wife’s choice; however, these choices may vary according to the dyad patient/caregiver. In particular, as shown in the ALICE study , female caregivers appreciated it significantly more than males and younger caregivers more than older ones.
The limits of this study rely on the non-generalization of the results because we only report the opinion of one dyad. In addition, it is essential to assess the device on a longer period and with a larger number of dyads in order to evaluate the benefices and limits for the patient and the caregiver.
Moreover, this experiment shows the usefulness to dispose of various electronic tracking devices on long term in order to better meet the needs of the dyads who ask professionals a solution to manage this wandering behaviour.
1.5
Conclusion
This preliminary study reported the dyad caregiver/patient’s appreciation on an electronic tracking device. Improvements are currently done in order to assess upgraded versions.
Many electronic tracking devices exist but it is essential to propose their testing to wandering persons and their caregivers, in order to meet their needs and respect their preferences. We must insist on the pre-eminence of the patient’s opinion that must be consulted every time as possible, for technologies good practice issues as well as ethical issues and dignity. The end-user, in this case the patient, must be in the centre of the dynamic co-design process between the medical team and the manufacturers.
However, the informal caregiver must not be excluded because he/she plays an essential role in the care of his/her proxy.
Thanks to this study, an improvement of the device’s functioning has been done. The integration of the “tracking” function will be competed by the implementation of a phone link with an “automatic pick up” function in order to create a proximity link and to allow a dialogue between the caregiver and the proxy, in particular during the searching phase. At last, for people who have neither a cell phone nor a computer with the Internet access, it will be possible to send warning messages orally towards a classic phone. This updated model will be assessed by other dyads caregiver/patient.
This iterative approach, user-centred, is essential because a technology appropriation relies not only on the technical feasibility but also on the tool acceptability so that the proposed device meets the end-users needs and expectations.
Acknowledgments
This work was carried out as a part of TANDEM project, funded by the French National Research Agency (ANR-RNTS).
Many thanks to CGx-Systèmes, project’s partner, for the device’s lend and improvement.
2
Version française
2.1
Introduction
L’errance ou la déambulation chez les personnes atteintes de maladie d’Alzheimer ou maladie apparentée est un trouble du comportement dont les causes sont mal connues. La prévalence de l’errance chez les personnes démentes est difficile à évaluer ; en France, chez ces personnes vivant à domicile, elle est estimée à 12,6 % . L’errance en dehors du domicile ou de l’institution peut être problématique. Les personnes qui présentent ce trouble peuvent se perdre et sont exposées à un risque d’accidents (chutes, fractures) et de mortalité prématurée. La personne errante doit être retrouvée dans les 24 heures après sa disparition pour que le pronostic vital ne soit pas engagé . L’errance est souvent « chronophage », source d’inquiétude et d’épuisement pour les aidants. Cet impact sur les aidants familiaux influence la décision d’institutionnalisation .
Malgré l’absence de définition précise et de compréhension de ce trouble, des stratégies reposant sur diverses approches non médicamenteuses (thérapie comportementale, exercices, musicothérapie, modifications de l’environnement, etc.) ont été mises en place. Parmi celles-ci, les systèmes de géolocalisation « antidisparition » sont des techniques accessibles qui permettent de gérer ces situations, en retrouvant rapidement une personne qui erre hors de son domicile, et ainsi de réduire l’anxiété et le fardeau psychologique des aidants familiaux. Ces dispositifs permettent également d’éviter le confinement du patient à son domicile et donc de favoriser son autonomie. Cependant, ces dispositifs, déjà largement commercialisés sous des formes variées (montre, téléphone portable, etc.), ont été développés sans une connaissance suffisante des besoins des usagers. De plus, ces produits sont rarement évalués sur le plan de l’acceptabilité et de l’utilisabilité et soulèvent de nombreuses questions d’ordre éthique . Les arguments avancés sont l’atteinte à la vie privée et à la dignité de la personne et la perte de liberté. Un autre point mis en exergue est la capacité à consentir des personnes atteintes de démence. Ainsi, apparaît un conflit entre différents principes éthiques, comme, par exemple, les tensions, d’une part, entre les principes de bienfaisance et de non-malfaisance (primum non nocere) et, d’autre part, entre la sécurité et les droits à l’autonomie, à la liberté, à la dignité et à la vie privée. C’est la question de l’équilibre entre les valeurs sociétales/légales et les valeurs individuelles/centrées sur la personne . Peu de travaux sur les perceptions des gérontechnologies par les familles, les patients et les professionnels sont disponibles. L’étude ALICE s’est intéressée aux points de vue, perceptions et attentes des aidants familiaux de personnes atteintes de troubles cognitifs avec ou sans maladie d’Alzheimer vis-à-vis de 14 innovations technologiques dont les systèmes de géolocalisation. Une majorité d’aidants (53,3 %) pensent que cette technologie leur sera très utile. Aucune étude ne rapporte le point de vue détaillé des patients.
À l’hôpital Broca, nous avons initié le projet TANDEM-RNTS dans lequel est développé un dispositif informatisé d’aide au domicile dont l’objectif principal est d’améliorer la qualité de vie des patients atteints de la maladie d’Alzheimer et de leurs aidants naturels en s’appuyant sur les technologies de l’information de la communication, adaptées aux personnes souffrant de troubles cognitifs. Outre différents services utilisant les technologies telles la webconférence ou la stimulation cognitive informatisée, ce projet inclut un dispositif de géolocalisation. Avant l’intégration des différents services sur une plateforme (plateforme TANDEM), ce dispositif est testé auprès de personnes intéressées par ce type d’outil.
Dans ce travail préliminaire, nous rapportons l’opinion d’un patient et de son épouse sur le principe des systèmes de géolocalisation. Nous présentons également les appréciations du tandem patient–aidant après l’utilisation du dispositif.
2.2
Méthodologie
2.2.1
Étude de cas
2.2.1.1
Présentation de M. B.
M. B., 84 ans, est artiste et vit à son domicile avec son épouse. Il souffre d’une maladie d’Alzheimer à un stade modérément sévère (son Mini Mental State est à 12/30). Il se plaint essentiellement d’angoisses liées au fait qu’il ne parvient plus à trouver l’inspiration nécessaire pour produire de nouvelles œuvres. La promenade solitaire ayant toujours été pour lui un moyen de mobiliser ses capacités créatives, il continue à sortir seul chaque jour pendant plusieurs heures, espérant ainsi retrouver l’énergie nécessaire pour reprendre son activité artistique. Il note également que la marche prolongée apaise ses angoisses. Les envies de sortie sont généralement soudaines, imprévisibles et impératives. Elles peuvent survenir le soir, voire au cours de la nuit. Toute tentative de l’entourage pour s’opposer ou même différer la sortie entraîne un regain d’angoisse et un comportement agressif, en particulier verbal, du patient. Celui-ci reconnaît le caractère excessif de ce besoin de déambulation mais le rationalise. Il reconnaît également qu’il se perd souvent à l’extérieur de son domicile et le déplore.
2.2.1.2
Présentation de Mme B.
Pour l’aider dans la vie quotidienne, M. B. reçoit le soutien de son épouse et d’une auxiliaire de vie. Mme B., 68 ans, s’inquiète des sorties intempestives de son époux surtout lorsque celles-ci ont lieu la nuit. Cependant, elle n’imagine pas s’y opposer du fait de la détermination de M. B. à sortir et de son souhait de respecter son indépendance et sa volonté. Elle est donc très intéressée par des systèmes de géolocalisation et est très motivée pour tester le dispositif.
2.2.2
Fonctionnalités des applications et du matériel testé
Le système de suivi à distance qui a été testé se présente sous la forme d’un terminal mobile ( Fig. 1 ) fixé à la ceinture à l’aide d’un clip (facteur de forme proche de celui d’un téléphone portable) intégrant un récepteur GPS et des fonctions de téléphonie et de transfert de données via les réseaux GSM/GPRS. L’ensemble des possibilités offertes par le terminal « GPS » étaient les suivantes :
- •
alarmes géolocalisées (SMS via GSM ou TCP_IP via GPRS) :
- ∘
alarme volontaire (bouton SOS),
- ∘
alarme automatique en cas de sortie de zone ( geofencing ),
- ∘
alarme automatique en cas de détection d’inactivité,
- ∘
alarme automatique en cas de présomption de chute.
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