Electronic tagging of people with dementia who wanderBMJ 2002; 325 doi: https://doi.org/10.1136/bmj.325.7369.847 (Published 19 October 2002) Cite this as: BMJ 2002;325:847
Ethical considerations are possibly more important than practical benefits
- Julian C Hughes, consultant in old age psychiatry. (, )
- Stephen J Louw,, consultant physician ()
- Gibside Unit, Centre for the Health of the Elderly, Newcastle General Hospital, Newcastle upon Tyne NE4 6BE
- Care of the Elderly Directorate, Freeman Hospital, Newcastle upon Tyne NE7 7DN
Once again the issue of using electronic tagging to safeguard older people who wander has attracted media attention.1 It is tempting to see the arguments as simply two sided—one side stressing the need to ensure safety and the other waving the banners of civil liberties and human rights. We think that this is not simply a factual matter but one that touches important values to do with respect for people. The correct position, therefore, is to face the complex dilemma. Decisions about limiting a person's liberty should remain a matter of ethical concern even when technology finally makes the practical management of wandering easier.In electronic tagging the tag is usually a wristband. The circuitry in the tag may either set off a boundary alarm or emit a radio signal that allows the wearer to be tracked down by means of a hand held detector.
The problem of wandering in dementia is not trivial. It causes stress to carers, referrals to psychiatric services and hospital admissions, problems in the hospital environment,2 and an unknown number of deaths. The prevalence of wandering is over 40%, and in a five year prospective study 44% of wanderers with dementia were kept behind locked doors at some point.3 Since “wandering”' encompasses a variety of behaviours,4 a variety of solutions might be applicable.
What, besides electronic tagging, are the other solutions? Carers often find their own solutions—from locked doors to makeshift alarms to constant surveillance. Many people are put on various drugs, with the risk of adverse effects. Relatively few controlled trials have been conducted, and much of the research tends to clump together different behavioural and psychological symptoms in dementia under the abbreviation BPSD.2 Certain physical restraints have the potential to cause serious injury and death,5 and locked doors and bean bags, which are also physical restraints, are anathema to some. No evidence exists that “subjective barriers” such as patterns on the floor, mirrors, curtains, or other forms of camouflage on doors reduce wandering, but the possibility of harm, particularly psychological distress, cannot be excluded.6 There may be ways of understanding what a person's wandering means in order to allow potentially helpful psychosocial interventions.2
Is there anything wrong with electronic tagging? Evidence from small unsophisticated studies comparing events or attitudes before and after the installation of boundary alarms shows that such systems are effective and can decrease stress in carers and patients.7 But more robust evidence is needed. Carers like the idea of electronic tracking devices if these can ensure that the wanderer is found more swiftly.8 Some argue that for the sake of safety a slight loss of liberty is a price worth paying and that concern about privacy has force only if we imagine that the person involved is trying to hide.9 In the paradigmatic case of someone with moderate to severe dementia who wanders, electronic tagging arguably satisfies an ethical principle and decreases stigma. Being lost and half dressed in the middle of the night near a dual carriageway is hugely stigmatising, and electronic tagging may avoid this.
And yet, what of civil liberties and human rights? 10 11Not everyone is a paradigmatic case. At the margins the need to protect the right to privacy, even in mild dementia, should be recognised. However severe a person's dementia, it should not be taken for granted that his or her need to wander is simply a matter of pathology that requires management rather than understanding. Although tagging might increase liberty in some senses, it has the potential to decrease autonomy and tracking devices might settle the anxieties of others without attending to the needs of the person with dementia.
It seems important, then, for the libertarian flag to be kept flying—for the sake of the individual and even in the face of convincing evidence (which is not yet apparent) that tagging improves overall quality of life. The risks and restrictions of alternatives to tagging, including the loss of privacy entailed in benign surveillance, should be kept in mind. But the use of such devices, even by families, must be considered carefully. This should be no more than good clinical practice, perhaps in due course supported by legislation regarding decisions concerning people who lack capacity. People with dementia might have capacity to make this particular decision, and their views should be respected. In the absence of this capacity, a decision will need to be made about the person's best interests, but this does not just mean the person's best medical interests. Rather, the determination of what is best will require careful inquiry, negotiation, and judgment. It is especially at this point that understanding the wandering behaviour and looking for the least restrictive ways of dealing with it will become imperative.12 Where no consensus can be reached, the courts might have to decide. This is not, however, a sign of failure but of recognition of the seriousness with which we should regard the erosion of a person's liberty and privacy, especially when he or she has dementia.
Competing interests None declared.