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. 2003 Feb 1;326(7383):281.

Electronic tagging of people with dementia

Devices may be preferable to locked doors

Kevin D Bail 1
PMCID: PMC1125133  PMID: 12560288

Editor—Having spent several years in a leadership position in a progressive, culture changing nursing facility, I have seen the devices mentioned by Hughes and Louw in their editorial in use.1 I have seen that they allowed for the closing of the so called dementia unit and granted opportunity for confused residents to have freedom of the building instead of being contained and restrained. Of course, a stigma was attached to the bracelet, and people with mild dementia at times objected as they understood this stigma intuitively. On balance, however, the usage allowed more freedom of movement and more personhood than the alternatives of specialised and restrictive units.

Hughes and Louw's call for supervision by governments is off the mark.1 The answer does not lie in increased government supervision, which by its nature appeals to the lowest common denominator and assures loss of liberty. The answer lies in adequate funding of services to the population with dementia across the myriad of living situations. If home care were supported properly the use of these devices could be lessened. If nursing homes were at all adequately staffed and funded perhaps they could be eliminated all together. No one wants to be tethered to an electric bracelet, but it is preferable by far to locked doors and restraints.

References

  • 1.Hughes JC, Louw SJ. Electronic tagging of people with dementia who wander. BMJ. 2002;325:847–848. doi: 10.1136/bmj.325.7369.847. . (19 October.) [DOI] [PMC free article] [PubMed] [Google Scholar]
BMJ. 2003 Feb 1;326(7383):281.

Tagging should be reserved for babies, convicted criminals, and animals

Desmond J O'Neill 1

Editor—In some hospitals in the Republic of Ireland newborn babies are electronically tagged to prevent kidnapping. The use of such devices is well established for convicted criminals in some jurisdictions. Animals are also often tracked by means of electronic tags. Therefore, consideration to extend this technology to people with dementia, as mentioned in the editorial by Hughes and Louw, evokes unfortunate metaphors for our attitudes to people with dementia: infantilisation, custody, and a subhuman existence.1-1

To those who might see this interpretation as unduly melodramatic, it is important to be aware of movements in bioethics which seek to diminish or deny personhood in dementia. A typical example is the Royal Dutch Medical Association's use of the word ontluistering (removal of the light) for this condition, suggesting a lower level of being.1-2 One prominent ethicist, Daniel Callahan, has stated a viewpoint that the presence of dementia should be considered as a basis for the rationing of health care.1-3 Another has likened people with severe dementia to dogs, since they supposedly lack capacities for hopes and fears, dreads, and longings for their futures.1-4

Fortunately, an ethical countercurrent exists which is actively promoting the concept of personhood in dementia. One eloquent defender of the preserved humanity of people with dementia has spoken of the challenge of asserting this position in a hypercognitive society where people are valued for what they produce rather than for what they are.1-5 In this book, Post urges us to convert the dictum “I think, therefore I am” to “I will, feel, and relate while disconnected by forgetfulness from my former self, but still, I am.”

This position challenges us to reflect carefully and study in depth the causes of behavioural and psychological symptoms in dementia. Wandering may be triggered or exacerbated by external factors such as inappropriate environments, inadequate staffing, and failure to provide for the specialised emotional and social needs of a vulnerable group of people.

Although Hughes and Louw are to be applauded for opting for a predominantly libertarian approach to electronic tagging, they seem to imply that in certain circumstances its use should be considered.1-1 This is disappointing: our focus should be not only on understanding the basis of wandering in dementia but also on addressing support for people with dementia and their carers at home as well as deficits in the design and staffing of our institutions.

References

  • 1-1.Hughes JC, Louw SJ. Electronic tagging of people with dementia who wander. BMJ. 2002;325:847–848. doi: 10.1136/bmj.325.7369.847. . (19 October.) [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 1-2.Berghmans RL. Ethics of end-of-life decisions in cases of dementia: views of the Royal Dutch Medical Association with some critical comments. Alzheimer Dis Assoc Disord. 1999;13:91–95. doi: 10.1097/00002093-199904000-00006. [DOI] [PubMed] [Google Scholar]
  • 1-3.Callahan D. Setting limits: medical goals in an aging society. New York: Simon and Schuster; 1987. [PubMed] [Google Scholar]
  • 1-4.Brock DW. Life and death: philosophical essays in biomedical ethics. New York: Cambridge University Press; 1993. p. 372. [Google Scholar]
  • 1-5.Post SG. The moral challenge of Alzheimer disease. Baltimore: Johns Hopkins University Press; 1995. [Google Scholar]
BMJ. 2003 Feb 1;326(7383):281.

Technologies may be enabling

Suzanne Cahill 1

Editor—Hughes and O'Neill have contributed to the debate about the ethics of electronic tagging in dementia.2-1 Although technology has a role in promoting independence and improving quality of life in people with dementia, products that infringe on human rights, strip the individual of personhood, and relegate him or her to the status of an animal are totally unacceptable.

A European funded research project entitled ENABLE is currently investigating the role that assistive technology has in tackling the practical difficulties people with dementia and their principal caregivers experience in negotiating the home environment. Products undergoing trials in Norway, Ireland, Finland, and the United Kingdom have been carefully selected to ensure that no monitoring device or item with a surveillance component is included. Products have also been sensitively and creatively designed and adapted to blend in with the user's natural environment.

For example, a cooker switch off device contains knobs that look no different from those seen on a normal cooker. Similarly, a night lamp, which is linked to sensors attached to bed legs and fades on to enable the user to reach the toilet at night, has been designed to promote the dignity of the person with dementia while enabling him or her at all times. The study looks at outcome measures including quality of life, and people with dementia are themselves invited to comment on this aspect of their lives by using a standardised assessment scale. In Ireland all but one of the 15 people with a cognitive impairment interviewed to date have been able to complete the assessment tool.

The ethics of undertaking a cross national longitudinal study of this sort with people who have dementia has been at the centre of every major decision undertaken by ENABLE. Norway's principal investigator, Inger Hagen, is herself a former family caregiver.

In dementia we need to move beyond quick fix practical solutions such as electronic tagging, which so often serve the needs of formal caregivers while eroding the rights of those with a cognitive impairment. For people with dementia wandering may well be pottering with a purpose—a desire to use up excess energy, to check out an unusual aspect of the local environment, or simply to seek fresh air. Let us not stigmatise and dehumanise this vulnerable group any further; rather, let us rise to the challenge of attempting to understand the meaning behind these behaviours and develop person centred and creative ways of addressing the issue.

References

  • 2-1.Hughes JC, Louw SJ. Electronic tagging of people with dementia who wander. BMJ. 2002;325:847–848. doi: 10.1136/bmj.325.7369.847. . (19 October.) [DOI] [PMC free article] [PubMed] [Google Scholar]

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