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Ethics of electronic tagging of dementia patients

Published online on November 30, 2019.
DOI:10.20529/IJME.2019.078
Dementia is one of the most common neuropsychiatric disorders seen in old age with accompanying memory loss, aggressive behaviour, sleep problems and wandering behaviour with confusion (1). Many patients with dementia may be all alone at home with a domestic help and no family caregiver for most of the day and may sometimes wander off from their homes. Hence, dementia care programmes insist that an identity card with the patient’s key details be worn, in case the patient wanders away and is unable to return home or inform people about the location of their home.

A medical company in India has recently launched an electronic tagging device for cell phones, to help relatives track the whereabouts of dementia patients beyond a certain perimeter of the home address fed into the device.

We raise here some ethical dilemmas involved in the electronic tagging of dementia patients. These are:

  • Weighing the safety of the individual against the restrictions on their liberty, we may argue that electronic tagging may keep the person safe from an accident, or from being robbed or attacked. Studies show tagging has helped to find wandering patients faster, besides allowing them greater mobility. It may help reduce the anxieties of caregivers in a home or nursing home setting. Respectfully, electronic tagging is like wearing a waist band and far better than a patient with dementia being restrained in a nursing home to prevent wandering (2).
  • Who takes the decision to use electronic tagging and when it is to be installed? Does the first instance of wandering warrant tagging, or is it installed after repeating wanderings? There are no guidelines for this. When patients with dementia lack total capacity, the relatives make this decision but the dilemma arises when patients have partial decision-making capacity and need to be involved in such decisions. Is the decision taken in the patient’s interest or that of peace of mind for the caregivers? Tagging may be the least restrictive remedy for wandering, but would it make the caregiver less vigilant knowing that the alarm would beep in case of their charge wandering away? (3)
  • Some studies find that wandering within limits may provide exercise and an enhanced sense of independence to the individual (4). In light of recent positive trends in psychology, based on the concepts of personhood and citizenship, such devices may help in ensuring a better quality of life for people living with dementia (5).
  • In India, tagging may have specific social and cultural implications. People may feel that it is like tagging of criminals or animals. However, several patients with dementia in India are kept behind locked doors and a wandering episode can precipitate a patient’s placement in residential care. Assistive technology, like e- tagging may facilitate the patient’s remaining at home. On the other hand, 24-hour call centres will be needed for monitoring these devices and tracking them, using up the country’s scarce resources (6).
  • Patients with dementia need social interaction for a better quality of life, and dependence on electronic tagging may result in caregivers spending less time with patients. Clinicians and caregivers must note that tracking methods cannot replace quality care and meaningful relationships in patients with dementia (7).
  • GPS tracking technology and personal information revealed by the linking of personal and Google accounts may be used by companies to electronically bombard caregivers with information about dementia care products and shelters and raise privacy concerns for patients and caregivers.
  • A final issue is that while there are small anecdotal case studies and case series, no trials have been found for the efficacy of this technology. Though no safety issues have been noted so far, efficacy is difficult to establish reliably, unless randomised controlled trials are undertaken. After considering the pros and cons of this technology, it inevitably raises privacy and human rights concerns. However, it must be kept in mind that individuals using smartphones, often use “location services” for tracking their children or friends for safety during late-night taxi rides or travelling to relatively unsafe places; or to provide the location of a particular place. Such use does not necessarily make caregivers lax.

  • This technology needs to be tested. In comparison to locked rooms, physical restraint and sedation, it is the least restrictive method of handling wandering behaviour (8) and further trials can provide information on real-time efficacy in order to understand its applications We also suggest that changing the terminology to replace the word “tagging” can also help to perceive the device as more acceptable and user-friendly.

    Pragya Lodha ([email protected]) Independent Clinical Psychologist, Mumbai; Avinash De Sousa ([email protected]), Research Associate, Department of Psychiatry, Lokmanya Tilak Municipal Medical College, Mumbai

    References

    1. Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: a systematic review and meta-analysis. Alzheim Dement. 2013 Jan 1;9(1):63-75
    2. Miskelly F. A novel system of electronic tagging in patients with dementia and wandering. Age Ageing. 2004 May 1;33(3):304-6.
    3. Bail KD. Electronic tagging of people with dementia: devices may be preferable to locked doors. BMJ. 2003 Feb 1;326(7383):281.
    4. Robinson L, Hutchings D, Corner L, Finch T, Hughes J, Brittain K, Bond J. Balancing rights and risks: Conflicting perspectives in the management of wandering in dementia. Health Risk Soc. 2007 Dec 1;9(4):389-406.
    5. Baldwin C, Donnelly S, Downs M, Hulko W, Keady J, Manthorpe J, Harrigan M, Hall M, Gillett G, Williams S, Tilse C. Decision-making, personhood and dementia: Exploring the interface. Jessica Kingsley Publishers: UK; 2009.
    6. White EB, Montgomery P, McShane R. Electronic tracking for people with dementia who get lost outside the home: a study of the experience of familial carers. Br J Occup Ther. 2010 Apr;73(4):152-9.
    7. Welsh S, Hassiotis A, O’mahoney G, Deahl M. Big brother is watching you–the ethical implications of electronic surveillance measures in the elderly with dementia and in adults with learning difficulties. Aging Ment Health. 2003 Sep 1;7(5):372-5.
    8. Niemeijer AR, Frederiks BJ, Riphagen II, Legemaate J, Eefsting JA, Hertogh CM. Ethical and practical concerns of surveillance technologies in residential care for people with dementia or intellectual disabilities: an overview of the literature. Int Psychogeriatr. 2010 Nov;22(7):1129-42.
    About the Authors

    Pragya Lodha ([email protected])

    Independent Clinical Psychologist

    Mumbai

    Avinash De Sousa ([email protected])

    Research Associate, Department of Psychiatry, Lokmanya Tilak Municipal Medical College, Mumbai.

    Lokmanya Tilak Municipal Medical College, Mumbai.

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