Should patients with dementia who wander be electronically tagged? NoBMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f3606 (Published 20 June 2013) Cite this as: BMJ 2013;346:f3606
- Desmond O’Neill, professor of geriatric medicine
The biggest challenge in dementia care is to keep the person with dementia as our primary focus of attention.1 Divining someone’s wishes and needs can be challenging in the face of deficits in memory and language often encountered in dementia. Skill, subtlety, and appropriate training are required to ensure that the needs and wishes of carers and service providers do not impinge inappropriately on those of the person with dementia.
This task is compounded by what is known as the malignant social psychology of dementia,2 which is a widespread phenomenon. First described more than 20 years ago, these barriers to the appreciation of personhood among people with dementia include objectification, infantilisation, disempowerment, labelling, imposition, and stigmatisation. These tend to occur without malice or forethought but nonetheless are harmful to the wellbeing and care of those with dementia.
The earlier literature on electronic tagging pointed out that the technique was associated with objectification, infantilisation, and disempowerment.3 It is therefore troubling that the recent literature still embodies these negativities. The acceptability of tagging has generally been researched among formal and informal carers only, with the views of those with dementia relegated to the sidelines.4 Canvassing the views of people who are cognitively intact is not a substitute for engagement with those with dementia, as like carers they favour safety over autonomy.5 6
Enabling not controlling
This approach stands in stark contrast to an evolving body of work on technology and dementia, where collaboration and engagement with those affected has been a guiding principle.7 It is encouraging to see that such programmes can yield a range of assistive technology—for example, picture telephones, lamps, lost item locators—which are genuinely enabling and supportive of independent living. One particularly interesting technology is reciprocal messaging, with lamps that light with motion transmitted from both the patient’s and the carer’s homes, a reciprocal gesture softening the “big brother” aspects of unidirectional electronic surveillance.
This positive and person centred approach needs to be pursued for people who wander. Not everyone with dementia will wander, and not all wandering is problematic. However, critical wandering (where the person leaves home or institution without awareness of place or time8) is a feature of the illness that raises concerns, can be distressing for the person with dementia and carer alike (although usually in different ways), and is associated with an increased risk of institutionalisation.9
As with all behaviour, wandering is not a disease but a form of communication, and while our understanding of the phenomenon remains limited, the key goal of good dementia care is to interpret and respond to what is driving the wandering. Controlled wandering may be helpful, and a careful search for precipitants, as well as factors that render wandering problematic, may provide some of the solutions. There are promising indications that a person centred approach using environmental and cognitive behavioural approaches can reduce wandering behaviour,10 although the paucity of studies does not yet provide a strong evidence base for their effectiveness.11
For such an approach to work, those advising concerned relatives need to be trained in not only dementia care but also in understanding and negotiating the different ethical perspectives of carers and professionals.12 This is important so that professionals do not seem to be retreating to some form of high moral ground of civil libertarianism, as well as to allow recognition that our autonomy is exercised in the embrace of others.
Just as we discuss with carers that antipsychotics are not the solution to a range of behavioural problems, so too can we point out that tracking devices may provide a false sense of security and impinge on patients’ autonomy and that the patient’s needs require a broader palette of interventions.
The clinical and ethical grounds for this position are further supported by the uncertainty about the effectiveness of tagging in preventing people with dementia from going missing compared with more traditional methods such as identity bracelets.13 Even allowing for a lack of clarity about how effectiveness should be measured, traditional measures may be equally effective and less costly.11
If the medical profession is to take a lead in fending off tempting quick fix “solutions” such as tagging (as is increasingly the case for the overprescription of neuroleptics in dementia) we need to substantially increase training in dementia care for all specialties in primary and secondary care. The urgency is supported by evidence of low levels of compliance with accepted standards of assessment, support, and treatment.14
In addition, care professions must engage with wider societal players. The police force that has been involved with implementing a tagging programme for people with dementia in the UK has quoted money saving as a primary objective, and it is also troubling that tagging seems to be increasingly widespread among councils in the UK.
Is the impetus for shaping policy for a complex and common syndrome to be driven by policing, putative cost effectiveness, and ethical insensitivity, or can we use this debate to reclaim a person centred approach that embraces the person with dementia as the lead collaborator in a coalition of care?
Cite this as: BMJ 2013;346:f3606
Competing interests: I have read and understood the BMJ Group policy on declaration of interests and have no relevant interests to declare.
Read Rupert McShane’s side of the debate at doi:10.1136/bmj.f3603.
Provenance and peer review: Commissioned; not externally peer reviewed.