“A project, in collaboration with the Ministry of Community and Social Services, that aimed to gain a better understanding of the complex realities related to using locating technology with citizens who are at risk of wandering and subsequently becoming lost.”

E X E C U T I V E   S U M M A R Y

It [wandering behaviour] has a huge impact because he [John] is not able to experience life. If he goes out with someone, I wouldn't necessarily trust someone to take him out, because I would worry that he would bolt and run away. Less independence, less experiences.

~Consumer Trial Participant

The Locating Technology Project (LTP) is an initiative funded by the Ministry of Community and Social Services and partnered with Accessibly Yours and the School of Rehabilitation Science at McMaster University.

The main objective of the LTP is to identify and then examine existing electronic locating systems that have been designed to assist people with a developmental disability, Alzheimer's disease, other dementias, or utism who have demonstrated wandering behaviour or are at risk of becoming lost.

The examination of each device focused on (a) determining the feasibility of available locating devices for improving the safety and security of persons facing obstacles in regard to communication and/or cognitive function, (b) underlining the relative merits and limitations of selected technologies and (c) exploring consumer views and ideas related to this dilemma.

A review of the literature has revealed there is disagreement among researchers regarding the definition of ‘wandering'. For the purpose of this study, the following operational definition was used:

Wandering is either or both a purposeful or aimless complex behaviour with various presentations including repetitive locomotion, hyperactivity, excessive walking, and agitation, manifested by an individual with cognitive impairment which may lead to safety concerns.

Divergent information also exists in studies addressing the prevalence of wandering for people with dementia (including people with Alzheimer's disease). These reported differences could be attributed to dissimilar study designs, inconsistencies in the definition of ‘wandering', and a broad range of assessment methodologies, study populations, and time period of data collection.

A review of the literature suggested that people who wander are more likely to be male, extroverted, mature adults, using psychotropic medications, experiencing sleep disturbance, and are more cognitively impaired than people with similar diagnoses and stated problems. Current techniques to reduce or prevent wandering behaviour fail to yield strong support, which therefore suggests limited effectiveness in the reduction and management of wandering behaviour. Although there is growing interest in the use of electronic locating devices, research is lacking in the examination of the impacts of such a device on both individuals who wander, and on their caregivers. This project has sought to improve this disparity in research.

The Project Team divided this initiative into two phases. The purpose of Phase 1 was to conduct a technical evaluation of each device in order to establish a complete description of the attributes, strengths, and limitations of each device. Initial scenario and device testing was performed by students and members of the team. Once the scenario testing was complete, evaluation criteria for the effectiveness, wear-ability, ease of use, and ethical considerations were established. Tested systems that met a pre-determined success rate were selected for trial testing in the second phase of the project.

The purpose of Phase 2 of the project was to test the effectiveness of the selected technologies with caregivers and people who are at risk of wandering and becoming lost. This implementation served to provide an understanding of the complex realities associated with caring for a person who is at risk of wandering and becoming lost. Following the recruitment stage, potential participants were mailed an information package. Participants were then selected to be either part of the consumer trial or the consumer panel. After a transcribed interview, consumer trial participants were supplied with a device to use for ‘real-life' testing. They were asked to keep a journal to record the physical and emotional aspects of the experience with the device. After a determined period of time, participants were contacted for a second transcribed interview to share their specific reactions and perceptions of the experience. Consumer panel participants, in group settings in five selected cities, were shown a presentation on wandering behaviour and a demonstration of devices under evaluation and asked to fill out a questionnaire and participate in open format discussions. At the end of each of the five sessions, the questionnaires were collected for data analysis.

Through the analysis of the data collected both from the consumer trial and consumer panel, the project has revealed that among the technologies tested, while there are reported strengths, severe limitations exist in the areas of reliability and practicality. Above all, no one device meets the needs of every individual, family, or caregiver. Using an electronic locating device to locate people poses ethical concerns and potential moral ramifications. The literature review revealed that limited attention has been paid to these concerns and revealed divergent opinions pertaining to the wear-ability and social acceptance of electronic locating systems for both persons at risk and their caregivers.

The wearing of locating devices raised ethical concerns among the project team that included: stigmatization associated with wearing such a device; maintaining the wearer's dignity; wearer autonomy; caregiver autonomy; criteria for using a locating device or buying a locating device; and the wearer not being cognitively aware of the device. Results from the consumer trial and consumer panel showed participants were also

concerned with the associated ethical considerations and while they cited concerns similar to those raised by the project team, they also stated that the device had positive impacts on their lives. Many felt that the device acted as an aid or reinforcement; that it provided a sense of comfort and brought peace of mind; and that the device gave the promise of future independence and freedom.

The LTP team cannot responsibly recommend that any one device be used exclusively for persons who wander. Certainly, as discussed above and further discussed in the report below, there are certain advantages to some of the devices tested. Equally, however, there are demonstrated weaknesses and limitations. The project team can recommend that anyone searching for an alternative to traditional methods of intervention of wandering behaviour consider researching the use of an electronic locating system. That being said, the LTP team also recognizes that funding needs to assist and support caregivers of eople who wander. This need for funding was one of the recommendations raised by the participants of this study. Also recommended by participants, among many other suggestions, was that there be a size reduction in the device, that future designs of devices become more weather tolerable and water resistant, and that the general appearance be changed. The variety of these recommendations show that each individual and their caregiver have different needs and requirements and further confirms that an electronic locating system, while it may be a solution for some, is not the solution for everyone.