Abstract Introduction

JOURNAL OF THE INTERNATIONAL SOCIETY FOR TELEMEDICINE AND EHEALTH

TALKMEHOME: A FEASIBILITY STUDY OF USING REAL-TIME COMMUNICATION AND LOCATION SERVICES TO GUIDE A LOST PERSON WITH DEMENTIA HOME SAFELY Jan M. Nauta Dr Ir1, Jeffrey Brangert MBA2, Marcel Roest3, Ruud Janssen Dr Ir1, Marike Hettinga Dr Ir1 1

Research Group ICT-Innovations in Healthcare, Windesheim University of Applied Sciences, Zwolle, The Netherlands Carintreggeland, Hengelo, The Netherlands 3 Verklizan BV, Sliedrecht, The Netherlands 2

Abstract Objective: People suffering from dementia run the risk of getting lost when going for a planned or unplanned walk. TalkMeHome is a new service in the making, which will be available to care professionals to guide people with mild dementia home using a GPS-enabled smartphone. The aim of the present study is to gain first insights into the effectiveness of this new service and the experiences of the users, including both care professionals and lost persons. Materials and Methods: In this small-scale study four participants suffering from mild dementia were guided home while being observed by two researchers. The conversation between the person with dementia and the care professional was recorded digitally. Experiences of the persons with dementia were noted during an interview and questionnaires were completed by the care professionals. Results of the study were discussed with the care professionals afterwards. Results: All participants were guided home satisfactorily, even when conditions were suboptimal. Once the connection was made, the use of a smartphone posed no specific problems for the four participants. Communication was found to be good, although guiding someone home proved a demanding task for the care professionals. In the final discussion they expressed their concern about the real-life situation in which they would have to guide home somebody who is very confused. Conclusion: It is in principle possible to guide lost people with dementia back home using the TalkMeHome service. Prior to implementation of this service, however, the technology needs further improvement. As the task of guiding somebody home proved to be difficult, extended training facilities should be made available for care professionals.

Keywords: telemedicine; mobile health; medical device; data security; privacy; risk management.

Nauta JM et al. J Int Soc Telemed eHealth 2013;1(2):54-61

Introduction In 2010 an estimated 36 million people worldwide were living with dementia. Expectations are that this number will increase to 66 million by 2030 and 115 million by 2050.1 In the Netherlands alone 250,000 people are living with dementia and this figure will rise to 565,000 by 2050.2 Currently, 70% of these persons with dementia live at home, looked after by their carers, with 82% of these informal carers at serious risk of being overburdened. The distress informal carers experience when they realize that their care recipients could get lost during a planned or unplanned walk may contribute to their burden.3 Getting lost can lead to hazardous situations for persons with dementia.4,5 A number of obvious preventive measures can be taken, such as locking house doors.6 For persons with dementia, however, such interventions reduce the quality of life, of which out-of-door mobility is an essential element.7 The TalkMeHome concept TalkMeHome is a new mobile service in the making, designed to guide lost people home safely and thereby relieve the burden on their informal carers. The lost person with dementia will be guided home by a care professional from a care centre using a GPS-enabled smartphone. The lost person’s location is displayed on a map on the professional’s computer screen, with photographs taken of the immediate surroundings (if available). This enables the care professional to understand the situation and give proper instructions, e.g., “Please turn left here”, or, in case of a misinterpretation of the instructions, “Please turn back now”. Either the person with dementia or the care 54


professional can take the initiative to establish a connection. This service is primarily intended for people with mild dementia, because the service relies on the cognitive abilities of the lost person, such as the capacity to use a smartphone. The TalkMeHome service differs from other approaches found in the literature, such as the use of dedicated tracking devices.8-10 These devices display the location of a person with dementia on a computer screen, for instance in the carer’s home, but do not apply the principle of simultaneous conversation and location update information. Such a service requires the carer to go out and accompany the person with dementia home. This may add to the carer’s burden, particularly if his or her mobility is limited. Another application of GPS technology for lost people is the use of a PDA-based auditory navigation tool, which can be used as a homing device.11 Although safety issues while using such a navigation tool were not detected in an earlier small-scale study,12 these systems are unable to respond adequately to unforeseen changes such as a road block. A care professional should be able to advise a safe detour in such situations. Moreover, existing navigation tools are not always able to determine safe walking routes. The aim of this study was to investigate the practicality of the TalkMeHome service in a prelimin-

ary study. The study provides a first insight into the effectiveness of the TalkMeHome service in guiding persons with dementia home: Does a care professional succeed in guiding the lost person home? What issues need to be addressed? Moreover, the user experience during the process of talking someone home was investigated, both for persons with dementia and for care professionals, especially the usability of the service, and the confidence and safety as experienced by the users.

Methods Prior to this study, the mobile device to be used by the person with dementia had to be selected and the technology required for the TalkMeHome service had to be installed. An overview of the required equipment is shown in figure 1. The Nokia 5230 smartphone was selected because of its uncomplicated user interface and favourable pricing. The red button on this smartphone was used as the button to be pressed by the person with dementia to ask for help. Google Maps with Street View was used to show the location and general area of the person with dementia (figure 2). A more elaborate specification of the design and design considerations has been provided elsewhere.13 It should be noted that the time interval between two lo-

Figure 1. Overview of the technical system.


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cation updates was 18 seconds, because a considerably shorter time interval (e.g., 10 seconds) was found to result in updates being missed occasionally.

Procedure All persons with dementia who participated in this study were only invited to a single session, which consisted of an intake, a field experiment and finally a short interview. They participated voluntarily and received no training in how to use the smartphone. Before the field experiments started, each participant was first visited at home by two researchers, both experienced nurses. The inclusion criteria (see the section “Participants”) were checked in an interview setting. Because the participants were visited at home it stood to reason that their informal carers were involved. The researchers informally assessed the cognitive abilities of the participants in everyday life, their mobility and domestic circum-

stances. If the participants met the criteria, they and their informal carers signed an Informed Consent Form. No additional testing, such as an MMSE test, appeared to be necessary. After a brief explanation the participants were invited to go out for a walk, accompanied by two researchers from our team. After a short walk (typically 500 m), the actual field experiment started with one of the researchers pushing the smartphone’s alarm button to establish a connection with the professional in the participating care centre. Subsequently, the care professional guided the participant back home using the TalkMeHome service. One of the researchers observed the participant, while the main responsibility of the second researcher was to ensure the participant’s safety, for instance in traffic. During the field experiment data were collected in a number of ways. First, the observations made were documented and the conversation between the participant and the care professional was digitally recorded.

Figure 2. TalkMeHome dashboard. Nauta JM et al. J Int Soc Telemed eHealth 2013;1(2):54-61

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Back at the participant’s home a short structured interview was conducted, consisting of six questions about the ease of use of the smartphone, feelings regarding safety and security and the comfort experienced in using a smartphone in public. The results of the interview were registered on a form: each of the questions could be answered with yes, neutral, or no, and notes were taken per question. The care professional at the care centre completed a similar questionnaire containing 14 questions about the communication with the participant, the hardware and software used (e.g., the usability experienced), workload (e.g., whether it was possible to do other tasks while guiding somebody home) and finally how comfortable the care professional felt when guiding a person home. No further observations were made in the care centre. After completion of all sessions, the data were assembled, analysed and peer-reviewed by the researchers. After that, the results were discussed with the care professionals, who further clarified their points of view. No ethics approval was sought because according to Dutch regulations this feasibility study is not considered as medical scientific research.14

Two female care professionals with 10 and 11 years of experience in telecare took part in the study. Both of them were employees of the participating care centre. This care centre employs nurses to handle emergency calls, because this responsible task requires adequate nursing competencies as well as specialized communication skills.15 Both care professionals finished their training at a Dutch University of Applied Sciences. It should be noted that prior to the study the care professionals had not had an opportunity to gain experience in guiding a person with mild dementia home, although a limited number of practice sessions with team members were held. Figure 3 shows one of the care professionals at the care centre interacting with the TalkMeHome system.

Participants All four participants who took part in the study met a number of inclusion criteria. They were suffering from mild dementia while living at home independently or together with an informal carer. Moreover, they were able to follow instructions during the walk and use the available smartphone. Finally, they were able to walk a sufficient distance during the test (on average approximately 2,000 m). Participant #1 lived in a small town of 7,000 inhabitants. She was diagnosed with Alzheimer’s disease in a memory clinic four years earlier and had already got lost once. Participant #2 lived in a larger city of 130,000 inhabitants and suffers from Alzheimer’s disease. She uses a wheeled walking frame. Participant #3 lived in a small town of 70,000 inhabitants. She had also got lost once already. This participant had been suffering from dementia for some years. Participant #4, who lived in a village of 7,000 inhabitants, was the only male participant. He had been diagnosed with Alzheimer’s disease by a gerontologist. This participant cannot be left alone anymore. Nauta JM et al. J Int Soc Telemed eHealth 2013;1(2):54-61

Figure 3. Care professional guiding one of the participants home.

Results During the field experiment with participant #1 the transmission of GPS locations ceased after a few minutes, most likely due to insufficient UMTS coverage (i.e., Universal Mobile Telecommunications System coverage). However, this participant was able to describe her surroundings accurately. Based on this information, the map and corresponding Street View images, the care professional was able to satisfactorily guide the participant through her home town. The map presented by Google Maps during the field experiment with participant #2 turned out to be incomplete and inaccurate because the participant’s apartment was not on the map yet. But as she was fa-

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miliar with the immediate vicinity of her home she could still be guided home successfully. With participant #3, difficulties were observed at a road construction site. It took a while before the care professional understood the situation. After that, she guided the participant home making a detour. Participant #4 sometimes gave erroneous information, including some incorrect street names, which made the care professional’s task harder, particularly since Street View was not available for this area. In this case the care professional had to rely entirely on the map locations. The participants were able to move through traffic independently. The researchers therefore tried to avoid contact with the participants. However, participant #1 initially tried to get in touch with the researchers. Participant #2 only had eye contact a few times, as did participant #3, in which case the researchers also gave brief instructions at the aforementioned road construction site. Now and then participant #4 started a chat with the researchers, as he did with other people he met. In one of the four experiments receiving a so-called “fix” (i.e., receiving the initial GPS-coordinates) of the person with dementia was problematic. Although this problem could be resolved easily by restarting the TalkMeHome session, it could take up to 90 seconds before the location of the lost person was known to the care professional. In another case the connection had to be re-established for reasons unknown. Table 1 summarizes the responses collected from the care professionals. The responses collected from the participants can be found in Table 2. This table makes a distinction between experienced safety and security. Safety has to do with road safety while security relates to the risk of getting lost.

Effectiveness In all four field experiments the participants were guided home satisfactorily. However, the start of the experiment typically posed a problem, as it was not known which way the participant was facing while standing still, and the meaning of the terms left and right were not clear. In the field experiments the care professional was able to solve this by asking the participant simply to start walking. If the direction proved to be wrong, the participant was subsequently asked to turn around. Apart from this issue, only two mistakes were observed during the field experiments. Nauta JM et al. J Int Soc Telemed eHealth 2013;1(2):54-61

In both cases, participants took a wrong direction, but this was easily corrected by the care professional after approximately 20 m. The field experiments showed that the TalkMeHome service functions well if three conditions are met: a reliable map is available; GPS locations are updated frequently; and lost persons give a good description of their surroundings during a walk. However, the experiments also showed that guiding a person with dementia home is still possible if only two of these three conditions are met. For example, the description given by the person with dementia is not really necessary, as guiding somebody home with a reliable map and GPS locations alone turned out to be possible as well. Moreover, it is still possible to guide a lost person home if the updates of GPS locations are (temporarily) interrupted provided an initial location is available, the person with dementia is able to describe his or her surroundings adequately and a reliable map is available. Finally, the field experiments showed that even if there is a minor discrepancy between the map presented and the actual situation, guiding somebody home is still possible.

User Experience None of the participants experienced the use of the phone as cumbersome. Three participants found it quite normal to carry a smartphone with them. As far as safety and security while using the smartphone are concerned, the answers to the interview questions varied. None of the participants really felt safer during the field experiment. With regard to security, two participants felt more secure because they were carrying a smartphone connected to the TalkMeHome service. Three of the four participants would have liked to use the smartphone again the next day. The fourth participant was not convinced of the necessity of the TalkMeHome service. All participants found the audibility of the care professional to be good. The communication between the person with dementia and the care professional was found to be good as well, as became apparent from the completed questionnaires and the digitally recorded conversations. There were few misunderstandings between them. Whenever possible, the participant and the care professional had a chat, for example about the weather conditions, which contributed to a relaxed atmosphere while maintaining the necessary contact. 58


Table 1. Care professionals’ responses to the questionnaire. Question How easy was it to get in touch with the client (again)? How do you rate the client’s understandability? At first contact were you able to get a fix on the client’s location quickly enough? Does the map display the client’s location updates quickly enough? How do you rate the accuracy of the client’s location on the map? Is the program sufficiently easy to use? Does it take a lot of time and attention to talk a client home? Is it possible to perform other tasks while talking a client home? Did the client properly understand your instructions? Did the client properly carry out your instructions? Was the client able to give you sufficient information about his/her whereabouts? Did you properly understand everything the client told you? Did the conversation with the client extend to other topics besides talking him/her home? Did you feel confident and at ease while talking a client home?

negative: 0 poor: 0

Response neutral: 1 neutral: 0

positive: 3 good: 4

no: 1

neutral: 0

yes: 3

no: 1 poor: 0 no: 0 no: 0 no: 4 no: 0 no: 0

neutral: 3 neutral: 4 neutral: 3 neutral: 0 neutral: 0 neutral: 1 blank: 1

yes: 0 good: 0 yes: 1 yes: 4 yes: 0 yes: 3 yes: 3

no: 0

neutral: 1

yes: 3

no: 0

neutral: 0

yes: 4

no: 0

neutral: 0

yes: 4

no: 1

neutral: 1

yes: 2

No 4 0 1 3

Response Neutral 0 0 1 1

Yes 0 4 2 0

1 3

0 0

3 1

Table 2. Participants’ responses to the interview questionnaire. Statement I found it awkward to use the device around my neck. The instructions I got by phone were clear. Carrying this device I felt more secure outside. Carrying this device I felt safer outside.

I’d like to be carrying this device again tomorrow. I felt funny carrying such a device around my neck. However, the study did reveal that guiding somebody home is a demanding task for the care professional. She has to carry out a number of tasks simultaneously: analysing the situation at hand and planning future actions while continuously maintaining communication. The importance of carrying on the conversation is illustrated by the fact that one of the participants actually stopped walking when the conversation stopped for a while. There appeared to be little time for other tasks, such as looking up additional information about the person with dementia. This implies that care professionals need to process a great deal of information quickly and that proper Nauta JM et al. J Int Soc Telemed eHealth 2013;1(2):54-61

design of the TalkMeHome dashboard is therefore of crucial importance. Due to the time delay in transmitting the lost person’s location, the care professionals have to anticipate the situation ahead. They explicitly pointed out that one location update per 18 seconds is not enough. Even with a wheeled walking frame, walking velocities of elderly people may range from 0.9 to 1.1 m/s,11 corresponding to a distance of 16 to 20 m. Moreover, the care professionals expressed the need for greater precision of the measured location, allowing them, among other things, to determine which side of the street the person is walking on. This 59


suggests that precision and frequency of the location data need to be improved beyond what is technologically feasible with the setup used. It should be noted that the persons with dementia who participated in this study were not really lost, but accompanied by researchers who paid attention to safety issues. The meeting in which the results were discussed with the care professionals revealed their concerns about the potentially stressful situation (for both the lost person and the care professional) when a person with dementia is really lost. They wondered how to deal with a situation in which a person with dementia is unable to respond properly, for instance when they are very confused or stressed.

Discussion Despite the limited scope of this study, a number of results have been obtained with regard to the effectiveness of the TalkMeHome service. In all four cases the care professionals managed to guide the participants back home, even when conditions were suboptimal. This indicates that the core purpose of the TalkMeHome service – guiding a lost person home through a conversation by GPS-enabled smartphone – might well be used with people suffering from mild dementia. We furthermore conclude that prior to implementation of this service, the technology needs further improvement, in terms of both reliability of data transmission and precision and frequency of the location. It should be noted that other studies on the use of GPS to assist lost persons with dementia have also reported equipment problems.8,9 With regard to user experiences we saw a difference between the person with dementia and the care professional. None of the participants felt safer during the field experiment. Two of them felt more secure. Once the connection was established, the participants handled the smartphone without significant problems. The instructions provided by the care professionals were clear to them and there was room for a chat. For the care professionals the situation was different, we noticed a high cognitive load for them. The care professionals worry about the real-life situation in which they would have to guide somebody home who is very confused. We conclude that the situation of the care professional needs further attention, for instance by training them in how to handle such situations.


Limitations Although the first results with only four participants are encouraging as regards effectiveness, they can obviously not be generalized. Moreover, in this study we concentrated on the actual process of guiding a person with dementia home. The use of the TalkMeHome service in everyday life was therefore beyond the scope of this study. Questions such as “How can informal carers be certain that persons with dementia actually carry a (sufficiently charged) smartphone with them when going out?” remained unanswered. Also, legislative considerations, privacy and ethical aspects such as, “Who should decide about the use of a tracking device for people with dementia?” were not taken into consideration.16 As mentioned before, the participants were not really lost, nor were they confused. They were aware of the fact that they were accompanied by two researchers. Leaving participants alone and really lost would have led to possibly hazardous and therefore unethical situations. Taking these necessary precautions implied, however, that the circumstances for which the TalkMeHome service was intended were only simulated in part, as the care professionals also acknowledged.

Future research In terms of user experience, our work revealed the difficulty of the care professional’s task. This suggests that it is of paramount importance to offer proper training for care professionals, both in regular education and continuing training. For this reason the research group ‘ICT-Innovations in Healthcare’ will take the initiative to start a care centre ‘Skillslab’, a laboratory equipped with the necessary hardware and software to facilitate research and training with regard to the skills required of a care professional by TalkMeHome and other telecare services. In addition to more elaborate training facilities, the technology used by the care professional needs further improvement. We already mentioned reliability, precision and frequency of the location data. Furthermore, research needs to be done on how to properly design the TalkMeHome dashboard. .................................................................................................

Conflict of Interest: The authors declare no conflict of interest. There are no competing financial interests involved. 60

JOURNAL OF THE INTERNATIONAL SOCIETY FOR TELEMEDICINE AND EHEALTH At the time of writing there are no definite plans to launch the TalkMeHome service commercially.

Acknowledgements: TalkMeHome was developed by Novay, Carintreggeland, Windesheim University of Applied Sciences and Verklizan B.V. in cooperation with FindWhere. The TalkMeHome project is part of the innovation programme for IT-based services of the Province of Overijssel. The project website is at www.talkmehome.nl. We would like to thank Johannes de Boer, Lammie van den Bosch, Toke Bonekamp, Matti Groot, Cristian Hesselman, Rob Hermans, Henri ter Hofte, Martine de Jong, and Peter van Slingerland for their contributions. Above all, we wish to express our gratitude to our participants and their informal carers for their participation in the project. Corresponding Author: dr.ir. Jan M. Nauta Research Group ICT-Innovations in Healthcare Windesheim University of Applied Sciences PO Box 10090 8000 GB Zwolle The Netherlands E-mail: [email protected]

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Abstract Introduction - Open Journals@UKZN

Abstract Introduction - Open Journals@UKZN

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