Design, development and evaluation of a personalized information and geotracking system to solve privacy and security issues together for alzheimer's disease patients

Wandering is classified as a potentially life-threatening behavioral disorder and state of mind, which may occur in Alzheimer's Disease or related neurodegenerative diseases with possible development of dementia and cognitive impairment. In wandering state, patients may pose sudden urges to go out or are prone to straying outdoors that may lead to getting lost, physical harm and death, with varying risk exposures. When gone lost, safety of patients may be seriously jeopardized. Different methods and approaches, both pharmacological and non-pharmacological, were developed and employed for the management of wandering. In the last decade, an alternative non-pharmacological intervention called Electronic Geo-Tracking have emerged and been implemented. Electronic Geo-Tracking is a visionary approach that focuses on safe wandering/walking by minimizing risks. It enables carers to gather high resolution instantaneous spatial and temporal data regarding patients' whereabouts with high sensitivity, enhancing patient safety. A number of studies assessed the acceptability and usability of Electronic Geo-Tracking. They addressed issues, limitations and concerns, mostly related to ethics, patient compliance, cost, and technical and practical difficulties. Ethical arguments included capacity to consent, autonomy, privacy violations, and loss of liberty and dignity. Studies reported patients sudden loss of interest in such systems after a short period of use. Therefore, due to low patient and family caregiver compatibility and acceptability, use of such systems gets negatively effected. In this study, we designed, developed and evaluated a new Electronic Geo-Tracking System, that establishes a balance between patients' rights and safety by customization and personalization, in order to prevent ethical issues to occur. The system infrastructure consists of communication elements, services and various information Technologies. We adopted Object-oriented Design principles and Entity-Relationship Modelling, where applicable, and used Unified Modelling Language as a tool for design. The development platform is Windows 7. The system is implemented using Java programming language. The development tools include NetBeans 7.1 and Microsoft Access 2007. Evaluation was handled as a case study of a patient-family caregiver dyad's experience. Evaluation was two staged; before and after use. Both patient and family caregiver was trained about the use of the system. For both pre and post evaluation, a number of scales and a semi-structured face-to-face interviews were conducted. Qualitative data were collected and analyzed through content analysis. Findings show that family caregiver has adopted the system by declaring the system had given her comfort for tracking. However, patient had important complaince issues relating to the use of the system. The two main causes behind these issues were patient's severe loss of hearing, which had been medically diagnosed on the second week of use, and patient's use of mobile phone for the purposes of security and communication with his family caregiver. Consequently, patient's compliance with the system was found low. Nevertheless, patient had seemed as a reliable source for identifying his geofence. The findings support that the system should be evaluated through a relatively big participant set.