Electronic tagging and tracking of dementia patients : ethical concerns

Abstract

Dementia is a progressive neurodegenerative disorder which affects millions of individuals worldwide. This disorder presents significant challenges for affected patients, and also for families, caregivers and healthcare systems. Patients suffering from this condition often experience disorientation and wandering behaviour, which could put them at risk of harm, injury, or death. Technological solutions in response to these risks include electronic tracking and tagging devices. These tools have been introduced in various institutions as potential solutions for safeguarding individuals affected by this disorder. Such devices while providing reassurance to caregivers and reduce logistical and safety concerns, they also raise pressing ethical questions regarding autonomy, dignity, privacy, human rights, and the potential for discrimination and stereotyping. This dissertation aims to identify various types of electronic tagging and tracking devices used internationally, and to examine critically the ethical implications of using electronic tagging and tracking devices in dementia care, in the context of Malta. This research aims to balance the evaluation of potential benefits, including enhanced safety, reduced caregiver burden, and practical management of wandering behaviour, against significant concerns, including infringement upon freedom of movement and privacy, threats to personal dignity, and the risk of stereotyping or discrimination. The key guiding questions include: Does tagging and tracking affect human rights, related to freedom of movement, personhood and human safety? What are the benefits and detriments of human electronic tagging and tracking? Would the use of electronic tagging and tracking of dementia sufferers help to increase their safety? With the use of electronic tagging and tracking of individuals who suffer from dementia, would primary care givers and legal guardians feel more at ease when caring for these individuals and reassured should any issues arise? Would electronic tagging and tracking of individuals who suffer from dementia be discriminatory towards these individuals? Would electronic tagging and tracking of individuals who suffer from dementia bring about stereotyping of these individuals? To what extent would the use of human tagging and tracking be a viable solution to combat issues arising from wandering behaviour of the older person living with dementia? This study adopts a qualitative research methodology, relying primarily on secondary data sources such as peer-reviewed journals, books, policy reports, legal documents, and case studies. The dissertation is organised into three substantive chapters. The first chapter identifies the types of electronic tagging and tracking devices, their applications and benefits, situating them within both Maltese and international contexts and illustrating real-world consequences of wandering behaviour. The second chapter addresses legal considerations, including informed consent in the context of diminished capacity, confidentiality, and compliance with data protection regulations such as the General Data Protection Regulation (GDPR). The third chapter engages in sustained ethical analysis, critically examining autonomy, dignity, wellbeing, safety, and the risks of stereotyping and discrimination. The conclusion summarises key findings, acknowledges limitations, and identifies gaps for future research. By undertaking this critical and balanced analysis, the dissertation aims to contribute meaningfully to contemporary bioethical discourse on the integration of emerging technologies in healthcare, specifically within dementia care. It seeks to clarify whether electronic tagging and tracking can be justified as both a practical and ethical means of safeguarding vulnerable individuals with dementia, while simultaneously respecting their fundamental human rights.