By Karen Eltis¹

(2005) Oxford U Comparative L Forum 3 at ouclf.law.ox.ac.uk | How to cite this article

“No right is held more sacred, or is more carefully guarded by the common law, than the right of every individual to the possession and control of his own person, free from the restraint or interference of others, unless by clear and unquestionable authority of law.”²
“It sometimes seemed that the minute my back was turned something else would be done without any consultation and always with the comment that it was for her own good and she had been told what was going on”³ .

I. Introduction

The twentieth century was marked by an explosion of human rights, what Irwin Cotler eloquently deems the “secular religion of our times”⁴. Endeavouring to protect society’s most vulnerable – children, religious and ethnic minorities- modern democracies have raised their collective voice, protesting the indignities wrecked upon the oppressed. But one group, not any less exposed than their above-mentioned counterparts, is curiously conspicuous by reason of its systematic exclusion from the concerted effort to safeguard civil liberties⁵.
Far more disturbing than the mistreatment of the aged, particularly those suffering from dementia – most typically Alzheimer’s patients – is the insouciance that typically envelops the issue⁶. And yet, as Michelle Stowell, one of the lone jurists to address the issue, observes: “[a]mongst the vulnerable, arguably the most at risk are Alzheimer patients”⁷. To make matters worse, this vulnerability is exacerbated by the gender implications of aging, intersectionalities deriving from the fact that women form a more significant portion of the elderly population⁸.
With this in mind, the paucity of scholarly inquiry into ethics and dementia in the elderly, from a juridical perspective (although this is true for most disciplines) is lamenatable⁹. While elder abuse has increasingly been the object of greater scrutiny, the focus has heretofore nevertheless been rather narrow, addressing only the most obvious forms of domestic or institutional maltreatment¹⁰. A far more subtle – and therefore insidious – form of potential disregard for basic rights, begging further inquiry, relates to new technologies, and their remarkably nonchalant application to the aged.
Too often, it appears, we take the limitations imposed on the civil liberties of the elderly for granted, as a presumed natural consequence of their degenerating health and of our well-intentioned, at times paternalistic, desire to ensure their medical well-being. Not surprisingly, perhaps, this is all the more true respecting assistive new technologies, which, as their name suggests, tend to be judged innocuous by reason of their professed supportive finality¹¹ . However, as medical ethicist Susan Ashcroft-Simpson cautions: “some patient populations including the elderly or those with cognitive impairment may be at higher risk of having their rights denied in the name of safety”¹².
In fact, one ethicist has all but likened people with severe dementia to animals , since they supposedly lack capacities for hopes and future aspirations¹³. He therefore implied that their needs are purely physical, thus rendering any in-depth discussion of their civil liberties superfluous. A fortiori when the limitations on liberties at issue derive from purportedly helpful high-tech health care devices, whose novelty and sophistication tend to obscure the thorny human rights issues they raise. In such cases, commercial success appears to preempt any rights discussions, as privacy and other basic liberties may be traded in for often desperately needed carer respite and convenience¹⁴.
A rather vivid illustration of this phenomenon- one which the following hopes to address– is the growing practice of fitting Alzheimer’s patients (and others) with dementia – be they cared for in an institution or the home- with electronic wristbands, capable of tracking their every move via GPS technology¹⁵ .
The nascent practice of families and caregivers tagging such individuals with personal locators, equipped with GPS technology, capable of tracking their every of move¹⁶, may have been inspired by the established routine of fitting Alzheimer’s patients (and others) with dementia registered with the Alzheimer’s society with conventional (non-GPS) bracelets connected to a nation-wide police data base containing sensitive personal information.
This first well-meaning attempt, known as “Safe Return”, was quietly initiated over a decade ago by the U.S. Department of Justice, in partnership with the National Alzheimer’s Association, in an effort to respond to the threat of wandering due to dementia¹⁷. Canada’s programme, in collaboration with their American counterparts, similarly baptized “Safely Home”, which marries the Alzheimer society with the Royal Canadian Mounted Police, would soon follow¹⁸.
Essentially, the Alzheimer’s patient prone to wandering is first registered through the Alzheimer’s society itself, which acts as an intermediary, storing vital personal information on a police database deemed ‘confidential’¹⁹ . The patient is subsequently fitted with a wrist bracelet that allows her to be tracked by police via a database containing the partient’s personal information²⁰ – for the purpose of returning her to her home- should the need arise. While the Alzheimer’s society program itself does not yet use GPS technology, these means are being increasingly entertained as a more efficient way of achieving the same objectives.
The purpose of this programme, like that of assistive technologies, of course, is to help police in finding a person who has wandered²¹. While the objective is unquestionably laudable, at times the means employed to achieve it in actual fact are somewhat more problematic²². Even more challenging, it will be argued, is the culture of casual – even indifferent- acquiescence to these tactics²³ , and our collective failure to even inquire into their appropriateness prior to consenting, as though the desire to protect the frail is somehow automatically sufficient to justify any rights infringement that the process may entail²⁴.
The use of GPS technology to tag and track (typically elderly, typically female²⁵ ) Alzheimer’s patients raises more than a few key human rights concerns. They include potential restrictions on most fundamental rights: notably the right to liberty, privacy, potentially equality and perhaps more importantly, dignity²⁶. While that is generally true with respect to any privacy invading technology, its use to assist the elderly is uniquely disconcerting due to society’s above-mentioned tendency to gloss over the issue of seemingly abstract rights when the technology’s declared purpose is “the greater good” of safeguarding the elderly (and perhaps alleviating our own burden in caring for them²⁷).
Too often therefore, health promoting objectives relating to the elderly appear to invite an automatic nod to commercially successful new-age devices. In a word, it would seem that when it comes to the elderly, technological savvy often preempts any rights discussion, as both medical well-being and the promise of alleviating the burden of an under funded health care system²⁸ are implicitly taken to trump liberties²⁹.
A recent rights-based critique – a solitary voice, emanating not from a jurist but from scientific researchers in the U.K.³⁰ – aimed to draw attention to the want of debate surrounding what would otherwise be a controversial application of new technologies³¹: “Our point is that we need to recognize that this new technology also involves a restriction to a person’s liberty and an invasion of privacy. We need to be aware of the potential for abuse and have some safeguards” (emphasis added)³².
In the absence of such awareness, GPS elder tagging may simply becomes the norm- the “reasonable” means for dealing with dementia. Taken to its logical conclusion, it stands to reason that, in the long run, failure to tag and monitor dementia patients may no longer be an option, as those who do not avail themselves of this assistive technology may themselves risk incurring liability³³. Moreover, those still capable of consenting or who leave advanced directives refusing surveillance may risk being denied proper insurance coverage, deemed takers of unreasonable risk³⁴.
While certain restrictions on mobility may be more readily understood (not to say condoned) in light of the ‘rational objective’³⁵ of curtailing dangerous wandering and liberating the carer from what may otherwise be 24 hour monitoring, accomplishing this goal using the ‘least restrictive means’ – means that less impinge on liberty or dignity- would needless to say be preferable. Again, the chief difficulty lies not in the actual use of this assistive technology but in failing to question the ethics – and indeed constitutionality – of resorting to the same technologies deployed to keep track of fugitive criminals³⁶ those under house arrest, sexual offenders³⁷ and wild animals (cattle, wild game). While the issue of such devices’ constitutionality has – to a certain extent – been at least raised with respect to convicted sex-offenders, its application to the aged has, as noted, been characterized by an absence of serious scrutiny. The reason for this latter silence is twofold: first, as noted above, elder rights tend to be overshadowed by health concerns³⁸ and secondly, any abuse that does ensue can generally be traced to well-meaning caregivers – not the state, thus all but precluding any such recourse³⁹.
At this juncture, it is imperative to emphasize that the following by no means purports to even begin to grasp the entirety of the multi-facted issue respecting the ethics of tagging the elderly and others suffering from dementia. To the contrary, such an undertaking would no doubt require a multidisciplinary engagement, destined to study aspects exceeding the purely juridical perspective- insight which this author – a jurist- lacks. Instead, the purpose of this paper is quite simply to call attention to the matter in order to encourage much needed multidisciplinary study of the problem, and ignite the sort of deliberation essential to addressing a complex predicament not limited to juridical analysis⁴⁰ .

1. Balancing caregivers’ needs with patients’ liberties: the need for multidisciplinary reflection

Prior to proceeding, it is nevertheless of the essence to pause and recognize the terrible burden, along with the enormous courage, of those who care for their loved ones suffering from Alzheimer and age related dementia. Credit is similarly due to the Alzheimer’s society, whose tireless efforts are nothing but laudable. The merits of the “Safely Home”⁴¹ programme are certainly not at issue, nor will I attempt to resolve the continued use of GPS here.
Indeed, while not suggesting that this programme “safe return” (or “safely home”) be dismantled or that GPS never be used in this context⁴², this paper will espouse the urgent need for inter-disciplinary dialogue, leading to the development of a coherent, principled approach⁴³ to the use of assistive technologies in dementia care. From a human rights perspective, such an approach would first recognize the primordial character of personhood and the multiplicity of interests of the elderly, beyond physical concerns, irrespective of capacity, in order to promote more informed health policy decisions, enshrined in legislation. As health policy expert Bruce Jennings⁴⁴ opines: “Caring and caregiving, after all, are not only about meeting an individual’s needs or making him comfortable; they are about the recognition of the person being cared for and the recognition of the caregiver’s own personhood therein”⁴⁵ .
What is more, now is a principally opportune time to carefully consider the impact of new technologies on the most at risk amongst the vulnerable – the elderly suffering from some degree of mental incapacity, most commonly Alzheimer’s patients. Not only do we, as a population, live longer⁴⁶, but advocates for the elderly have voiced an urgent call for a national strategy on Alzheimer’s disease and related dementias⁴⁷. Plainly put, the issue cries out for resolution.
As the law (or, in this case lack, thereof) does not exist in a cultural vacuum, it appears edifying to contrast our⁴⁸ almost mechanical acceptance of assistive technologies with the sceptical UK approach to the same devices. Indeed, while both the American and Canadian Alzheimer’s society have embraced and promoted the surveillance programmes, their UK counterpart has, for its part, suspended the implementation of such monitoring techniques in light of the ethical concerns and whilst those are being thoroughly explored⁴⁹.
Finally, since the matter of dementia rights is to a certain degree inseparable from health care rights generally⁵⁰, caregiver concerns must not be neglected. If carers are tempted to routinely resort to such technologies – now in their infancy – it is perhaps due to the onerous burden they face, characterized by lack of resources and (the more costly human rather than more economically convenient technological) assistance. Our health policy must strive to remedy these intrinsic shortcomings as a means to ensure that such technologies – whatever their merits – if at all used, are deployed as a last and regulated resort. Sober reflection on the long-term implications of routinizing technological surveillance leaves little doubt as to the costs of too easily succumbing to the temptation of technology in this context – both financial (one could think of malpractice insurance) and in terms of liberties.
In view of that, following a succinct overview of GPS technology and its use in the context of anti-stalking legislation and privacy rights, Part I of this article will raise a number of issues potentially responsible for the “legal limbo” relating to the electronic monitoring of dementia patients. Namely, the identity and intentions of the watchers; paternalism, intersection of interests and the inappropriateness of traditional legal remedies, aggravated by definitional difficulties regarding what actually constitutes “restraints”. Part II will then proceed to engage in a comparative exercise, contrasting the “culture of care” and how it impinges on the willingness to rubber stamp GPS monitoring of the elderly suffering from dementia. Part III (or “a Final Word) explores prospective recommendations, offered for the purpose of promoting further discussion.

2. GPS technology, anti-stalking legislation and privacy

Born of military necessity, Global Positioning Systems Technology (commonly referred to as GPS) allows for state of the art positioning surveillance. While initially limited to air force reconnaissance, GPS technology is increasingly coveted in civilian circles. In effect, GPS ‘transreceivers’ (also known as a “tracking devices”)⁵¹, easily installed in telephones, vehicles, or even placed on persons, can record, track and effortlessly locate most any moving target with impressive accuracy, by emitting radio signals.
When deployed by the state to collect evidence, GPS technology is progressively under scrutiny, as evidenced by the leading American case on point State v Jackson⁵². Absent state action, however, in the US at least, GPS may legally be used to track property⁵³. The legality of private monitoring third parties and their property remains to be authoritatively settled, although some commentators speculate that “[t]racks of third parties, or of their property, without their knowledge are probably inadmissible and even illegal”⁵⁴. The basis for this assertion is anti-stalking laws⁵⁵, as tracking someone – be it through conventional means or GPS technology, is of course unlawful⁵⁶.
Having said this, anti-stalking provisions, while certainly helpful in some cases, are not necessarily relevant when GPS is used as an assistive technology in the health-care context (as noted, most often in cases of dementia). Beyond the obviously nefarious social implications of exposing carers to criminal liability, these laws are wholly inapplicable, requiring an element of malice⁵⁷ and reasonable fear⁵⁸ on the part of the victim, both lacking and irrelevant in this context. Quite clearly, it would seem, those who care for dementia sufferers – be it in an institutional or domiciliary context, are not likely to be charged under such laws for attempting to prevent wandering – nor, of course, should they be.
Likewise, as discussed below, similar logic would preclude patients or more likely their legal guardians or substitute decision makers from availing themselves of tort⁵⁹ or other private law remedies⁶⁰ against a monitoring caregiver – since that person is most often the legal guardian him or herself. Instead, the current situation is best characterized as a virtual legal vacuum. Indeed, In the US, the Second Restatement of Torts recognizes four privacy torts. For the purposes of tracking devices, Section 652A(1)(A) and (1)(B) – the torts for unreasonable intrusion upon the seclusion of another and for dissemination of an individual’s private information – are applicable. If an individual wearing a personal locator whose information was sold to a third party were to seek a claim due to publicity dispersed regarding his private life, he must show that the matter publicized was of a kind that would be “highly offensive to a reasonable person”, and that the information was “not of legitimate concern to the public”. However, under this tort, a person cannot recover damages when he is in the public eye, as the intrusion does not pertain to his private life”.
For liability to exist under the intentional intrusion of privacy tort, there must be an “intentional intrusion upon the solitude or seclusion of another”, and the intrusion must be of a kind that is “highly offensive to a reasonable person”. Because the tort involves an individual’s solitude, liability generally does not exist when the individual is in the public eye. However, solitude is not dependant upon whether the location is private, but rather upon the expectation of privacy and the kind of invasion that takes place”.
Of all the privacy torts, the intrusion upon seclusion tort could most easily be applied in the GPS context. This tort is available against a person who intrudes on the solitude or seclusion of another if the intrusion would be highly offensive to a reasonable person. This intrusion need not be physical, but would include any intrusion, such as eavesdropping, onto an individual’s private concerns. Thus, it seems at first blush that if a company with positioning information released a user’s information to a third party without consumer consent, the consumer would have a possible cause of action. The intrusion upon seclusion tort is also limited, however. Suits rarely succeed if the information has been gathered in a public space. Thus, as with the disclosure of personal facts tort, the fact that a person’s travels to public places are observable to the public would usually defeat any claimed”⁶¹.
While it is beyond the scope of this present endeavour to thoroughly discuss privacy law on point, suffice it to note that in Canada, the provinces that have created a statutory tort of invasion of privacy are: British Columbia (Privacy Act, R.S.B.C. 1979, c. 336), Manitoba (The Privacy Act, R.S.M. 1987, c. P125), Newfoundland (Privacy Act, R.S.N. 1990, c. P-22) and Saskatchewan (The Privacy Act, R.S.S. 1978, c. P-24). In Quebec, the situation is far simpler as the Civil Code of Quebec expressly recognizes the right to privacy. Invasion of privacy is a “delict” as per art. 1457 (then 1053 C.C.L.C. See Robbins v C.B.C. (1957), [1958] Que. S.C. 152, 12 D.L.R. (2d) 35). See also section 5 of Quebec’s Charter of Human Rights and Freedoms, R.S.Q. c. C-12 [hereinafter Quebec Charter], guarantees to everyone the “right to respect for his private life”. Art. 3 Civil Code of Quebec: “Every person is the holder of personality rights, such as the right to life, the right to the inviolability and integrity of his person, and the right to the respect of his name, reputation and privacy. These rights are inalienable”.

3. A Tendency to Trivialize: Why the Legal Limbo?

The already disquieting issue of elder neglect and abuse is further compounded by the advent of new technologies, which, while destined to improve the lives of those most at risk, raise fresh questions specifically pertaining to their basic human rights, particularly the right to privacy and dignity. As indicated, these issues, however pressing, are by en large left unaddressed by the legal community⁶², as the commercial success and expediency of assistive technologies obstructs debate. It further stands to reason that the virtual vacuum surrounding the constitutionality – and indeed the ethics – of saddling the elderly with certain technological devices – even when they are ostensibly designed to assist them – is itself a product of our collective neglect of elder-rights and of budgetary constraints relating to health care⁶³.
The general questions that need to posed – but are habitually left unheeded – are the following: “On what grounds can we justify overriding and restricting the liberty of a person with dementia? How far should such restrictions go? Who should authorize them and who should carry them out, and under what theory? Given that all behaviour carries some degree of risk, what level of risk is acceptable?”⁶⁴ Finally, what implications might the mechanical application of assistive technologies have for liability and insurance purposes?
Why then are such questions are left unasked (let alone answered)? Several more specific reasons may be cited: firstly, as noted, the ‘threat’ to the rights at stake generally stems not from government actors or malicious stalkers but from those who care most for the elderly – family and caregivers who avail themselves of the assistive technology. Accordingly, even though several Constitutional rights may be at issue, the traditional – however outdated⁶⁵ – conception that human rights abuses are at the hands of state actors, coupled with the very understandable reticence to exacerbate the already weighty burden shouldered by caregivers, all but precludes such analysis, as discussed⁶⁶ .
Yet another reason underlying the difficulty in addressing elder rights in this context is the following. Concrete interests relating to physical health or safety – particularly as they inhere to older people – are stereotypically perceived to overshadow if not trump all other issues- including “abstract” rights such as dignity and privacy. Thus, it is deemed only natural for the frail to prioritize health at the expense of other intangible interests – including certain basic rights, deemed ‘luxuries’ that those in poor health can simply not afford.
Yet a third obstacle to the sober deliberation of human rights difficulties stemming from the use of assistive technologies is the underlying philosophy of care. As shall be further discussed, approaches to the use of certain devices in elder care differ from country to country and significantly influence our willingness to accept certain limitations on rights in favour of health considerations⁶⁷ . Thus, while the British Alzheimer’s society has so far significantly refused to implement a monitoring programme, pending some resolution of the ethics dimension, that has, of course, not been the case in North America⁶⁸. Lastly, definitional qualms respecting how this new assistive technology should be labelled further complicate the issue⁶⁹. Let us explore these matters sequentially.

II. From a comparative view, is a “culture of care” responsible for rubberstamping GPS monitoring?

“The road to hell is paved with good intentions?”⁷⁰

1. What rights should be sacrificed “for their own good”?

First, the availability of various devices, adapted to the healthcare market, raise most delicate quandaries deriving not from those bearing the elderly ill-will, but from the most well-intentioned caregivers. Thus, violations of basic rights, when they do occur in this context, are most insidious, for they stem not from disregard but from (however ill-placed paternalistic) – concern. What is more, since it is private actors, rather than the almighty State, that are potentially infringing on civil liberties, fewer remedies are available⁷¹ and those that are, are of course not invoked⁷². This is all the more true when the private actors in question are health care professionals or even loving family members.
Accordingly, an adversarial conception of rights predicated on and limited to the individual appears ill-suited to a fruitful exploration of intrusive elder monitoring, when such surveillance is carried out by loved ones. Instead, in this context, the conventional individualistic model may best be replaced by the “Idea of rights in relationship”, as advanced by scholars such as Gilligan, Minow, Nedelsky, and Schneider⁷³. Hence, dementia sufferers are not the autonomous⁷⁴ individuals envisioned by the conventional approach, nor are their interests divorced from or even necessarily competing with those of their caregivers. Rather, they are most often quite dependant on both health professionals and family members, thus rendering the traditional rights paradigm as unsuitable⁷⁵ as any other enumerated private law remedies, normally available. Perhaps Edward P. Richards best summarizes the quandary asserting: “Alzheimer’s disease raises significant legal issues because it challenges our model of a world neatly divided into autonomous citizens and persons legally adjudged incompetent and under the control of duly-appointed legal representatives in secure facilities”⁷⁶ .
Again, the dependence parallel with children’s rights is elucidating. As Campbell points out⁷⁷: “On an even more basic level, characterizing children’s health care as a right creates two dilemmas that can arise whenever a rights-based discourse is employed. First, but this paradigm does not fit the context of children’s rights for many of the same reasons that feminists reject the idea for women. The immense physical, emotional, and psychological dependence children have on their families, their communities, and the state, makes placing them within the traditional rubric of individual rights impossible. The notion of rights in relationship – a concept formulated and developed by feminists – thus becomes indispensable to a viable framework of rights for children”⁷⁸ .
More specifically, the existing legal framework, in place for providing those lacking either competence or capacity (most notably children and the mentally ill or intellectually challenged) with some recourse when their civil liberties are at stake is conventionally the “best interests” test⁷⁹. While it is beyond the scope of this article to examine this generally problematic standard in any detail⁸⁰, the particular challenge with that standard when it comes to Alzheimer’s patients or those suffering from dementia generally is that anything serving to safeguard the physical integrity of such individuals is traditionally understood as being in their best interests. Thus, while it is agreed that people’s interests normally extend beyond the physical or health-related⁸¹, and that indeed, intangible interests such as dignity may at times trump even life itself, (as in the case of Nancy B in Quebec or Malette in Ontario for example⁸²), that same logic may rarely be extended to the aged or dementia sufferers, who are thought to reasonably value their precarious health above all else⁸³.
Such an approach may be consistent with a Utilitarian construction, which would presumably favour the use GPS technology by virtue of its supposed life-saving potential⁸⁴, thus outweighing limitations on certain rights. It does not, however, comport with the rights-based philosophy that has come to dominate our understanding of health policy. A fundamental principle animating health care ethics is the respect for human dignity. Indeed, the heightened emphasis on patient autonomy and dignity as an overarching consideration permeates the law. The same is true for determining incapacity. Physicians have an obligation to prevent harm as does the state in some countries⁸⁵. While the precise definition of what exactly constitutes harm remains the subject of great controversy⁸⁶, the concept clearly exceeds physical injury.
Elders should be no exception. The elderly – including those suffering from Alzheimer related or other dementia – are likewise entitled to the equal protection of interests other than physical health, including but not limited to dignity and privacy⁸⁷. Therefore, despite the tragic loss of autonomy, most often due to dementia, leading British Alzheimer’s medical researcher, the late Tom Kitwood, cautions: personhood and the inalienable rights intrinsic to it are not supplanted by age-related illness and the pragmatic health care considerations that accompany it. As he so eloquently puts it: “[t]he unifying theme is the personhood of men and women who have dementia – an issue that was grossly neglected for many years both in psychiatry and care practice”⁸⁸.
Thus, for instance, non-medical interests must be thought to survive dementia and age, as a leading researcher, Dodds (1996), emphasizes⁸⁹: “there is no reason to believe that as people become older and less able to live fully independently they lose all interests beyond the protection of their health”.
While for some elders in poor health, medical interests may indeed be primordial, what is important is not to casually assume that this is the case for all simply by reason of their age or condition. Such a “broad brush approach’ is, as Bruce Jennings qualifies it “objectionable” and indeed discriminatory⁹⁰ . Jennings proceeds to remark: “[a]nother aspect of the public health framework that makes it problematic in application to risky behavior by Alzheimer’s disease patients is the tendency to view persons categorically rather than situationally. Dealing as it does with large populations, statistical risks, and impersonal factors, public health policy often deals with broad categories, particularly in its surveillance and reporting functions”⁹¹.
Preferences amongst dementia sufferers will vary – even greatly – in function of several factors including cognitive ability, culture and of course idiosyncratic differences⁹². These cannot be dismissed and must instead be acknowledged: “…with Alzheimer’s disease specifically, the degenerative processes of the disease operate in often very subtle and uneven ways with respect to cognitive and reasoning functions”⁹³. The same author speaks of “degrees of competence”⁹⁴ that must similarly be accounted for.
Plainly put, as Bruce Jennings so eloquently does: “Curtailing freedom always calls for legal justification, and an Alzheimer diagnosis is in itself insufficient to furnish it”. He further posits: “The primary duty of the conservator vis-à-vis the person with Alzheimer’s disease is not so much protection from bodily harm, nor the promotion of best interests, at least as that term is commonly understood. Instead, the goal of conservancy is, simply put, to sustain the person’s human flourishing or quality of life as a person”⁹⁵.
Therefore, in applying the ‘best interests’ test, we must disabuse ourselves of any notion that the elderly (including those suffering from dementia) have lost interest in concerns beyond their physical well-being. It is perhaps worth reiterating that non-physical harms potentially attributable to the use of assistive technology involving GPS monitoring of dementia sufferers include: the stigma and humiliation (in moments of lucidity) that ensue from being tagged and tracked. Indeed, “beyond the stigma⁹⁶, actually being tagged may reflect on the social value attributed to group”⁹⁷. The elderly already suffer from low self-esteem in western culture, as evidenced by high rates of suicide amongst that group. Being tagged can presumably only exacerbate this situation⁹⁸.

2. Our “Best Interests” or Theirs?

What makes the matter all the more difficult is that tagging, at first glance, appears a practical means for preventing the potential physical – even life threatening – harm due to wandering in those suffering from dementia. This technology’s potential for offering some solace to those whose every minute is filled with fear that a patient under their care – often a loved one – will disappear only to be found dead⁹⁹ cannot be overlooked. As the British Alzheimer’s Society’s position paper on the issue (discussed in detail infra) states: “The Society is keen to point out that what is perceived to be ‘wandering’ is often not problem for the person with dementia”¹⁰⁰. Consequently, “[d]ecisions about limiting a person’s liberty should remain a matter of ethical concern even when technology finally makes the practical management of wandering easier”.¹⁰¹
What is disturbing and requires additional debate – rather than mechanical approval – is that overburdened, under funded caregivers may understandably be tempted to attach greater weight to the technology’s potential to alleviate their burden (than to patient’s intangible rights) thus giving it the rubber stamp. Understandably, “carers like the idea of electronic tracking devices if these can ensure that the wanderer is found more swiftly”¹⁰².
Of course, caretakers ‘best interests’ and those of their patients, though not inseparable, are intimately linked and therefore must be soberly considered¹⁰³.

3. Beyond Rights

Balance, needless to say, is of the essence¹⁰⁴: “mental health professionals have accused attorneys of focusing only on legal rights and ignoring treatment concerns, thus allowing their clients to “rot with their rights on””¹⁰⁵. Beyond rights however, arise ‘practical’ considerations, those relating to a patient’s psychological (even physiological) well-being- that too must be proper weighed prior to approving invasive assistive technologies the likes of GPS. Thus, for instance, “For some dementia patients, any diversion from their ordinary routine, even to undergo a procedure that to an ordinary person would seem minor, can ‘constitute real threats to needed order and stability, contribute to already high levels of frustration and confusion, or result in a variety of health complications”¹⁰⁶.
Ultimately, in the dementia context, Rebecca Dresser argues that “for treatment to be appropriate it must confer a benefit substantial enough to outweigh both its customary risks and the distinctive burdens it holds for the dementia patient unable to fathom its purpose”¹⁰⁷. Proportionality is key.
In order for such proportionality to be achieved, guidelines must be developed in conjunction with experts in various related fields. Having said this, it is beyond the scope of this initial reflection to offer specific criteria – as such an undertaking would no doubt require a multidisciplinary engagement, destined to study aspects exceeding the purely juridical perspective- insight which this author – a jurist- lacks. Instead, the purpose of this paper is quite simply to call attention to the matter in order to encourage much needed multidisciplinary study of the problem, and ignite the sort of deliberation essential to addressing a complex predicament not limited to juridical analysis.
Nevertheless, a number of observations of point may be of use. Revisiting the intersection of interests between carers and patients, this technology may have the additional disadvantage of creating a false sense of security amongst care givers, thus potentially fostering greater laxity in care or human surveillance (a tendency to leave it to the machines)¹⁰⁸. Some support for this premise may possibly be found in studies, which though unsophisticated, point to decreased alertness accompanying the benefit of decreased stress: “[e]vidence 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”¹⁰⁹.
Clearly, these devices are not – nor must they be taken – as foolproof, as illustrated by the following incident: “one patient was injured by a passing vehicle when he had got lost out of range of the device”¹¹⁰.
Finally, while the use of GPS tagging and tracking of Alzheimer patients (and others) suffering from dementia may first appear to curtail costs associated with insurance and liability, if it becomes routine, as noted, caregivers may ultimately be expose to greater such costs if and when they find themselves caring for those competent enough to refuse tagging (either at the time or via advanced directives, as noted below¹¹¹). Will liability follow those caregivers whose patient (or who themselves) refuse[s] tagging for failing to take this ‘reasonable precaution’?¹¹² Taken to the extreme, will those who decline GPS be denied insurance or even care (particularly by managed care facilities seeing profit…)?
To address these delicate issues, courageous legislation is in order, which would require the health benefits of assistive technologies to be shown to outweigh other interests – rather than be merely presumed to do so, in accordance with the principle of equality: in the words of Isaiah Berlin: “The assumption is that equality needs no reasons, only inequality does …; that uniformity, regularity, similarity, symmetry … need not be specially accounted for, whereas differences, unsystematic behaviour, change in conduct, need explanation and, as a rule, justification. If I have a cake and there are ten persons among whom I wish to divide it, then if I give exactly one tenth to each, this will not … call for justification; whereas if I depart from this principle of equal division I am expected to produce a special reason”¹¹³.
Lastly, definitional issues further complicate the matter. Whether electronic tagging is a form of restraint remains to be determined¹¹⁴.

4. Culture of Care: Culture of Rights versus Culture of Safety

As earlier indicated, the degree of acceptance of certain intrusive assistive technologies is very much a function of a given community’s prevalent philosophy or culture of care¹¹⁵. Quite obviously, “ethical systems are an extension of culture, taking their imprint from the ethno cultural systems from which they emerge”¹¹⁶. Hence, a principled approach to health care would be one attaching great weight to rights and inclusiveness¹¹⁷, in contradistinction to one that places expediency – cost, and convenience above other such considerations¹¹⁸ . For our purposes, and in illustration of this point as it relates to assistive technologies and dementia, it may be helpful to briefly compare the U.S.¹¹⁹ and the U.K.’s respective culture of care, as it relates to the readiness to accept GPS monitoring of dementia patients.
Interestingly and in sharp contrast with both its American and Canadian counterparts¹²⁰ , the UK’s Alzheimer’s society has decidedly declined to admit a surveillance programme raising privacy issues (such as “safely home” in the US or “safe return” in Canada) – let alone raise the possibility of GPS assistive technology to families- pending further research into the related ethics- research for which it is actively campaigning¹²¹. It has significantly acknowledged the need for serious reflection – rather than automatic acceptance – of these technologies in the dementia context, arguing that: “Technology, which is often used to ‘secure’ animals¹²², retail products and prisoners, should not automatically be transferred to people with dementia without full consideration of the ethical issues”¹²³ .
Moreover, this approach explicitly recognizes that the interests of caregivers too are at play, as it does their potential to overtake the debate or tip the balance in terms of tolerating certain intrusive means when these are practical¹²⁴ , rather than cloaking the issue of assistive technologies in paternalistic rhetoric, aimed at “helping” those most in need¹²⁵. Therefore, rather than rejecting criticism or even inquiry into the appropriateness of such devices in the dementia context as endangering the lives of patients, the UK society’s website directs visitors to articles directly engaging in such questioning¹²⁶.
This reluctance to welcome quick fixes evinces a culture of care that seeks to “sustain the individual’s moral personhood as much as possible”¹²⁷ , even at the expense of convenience or practicality.
In contradistinction, North Americans’ above described readiness to welcome assistive technologies, often in want of in-depth ethical debates¹²⁸, arguably speaks to our desire for expediency or quick fixes to multifaceted issues. American culture has been described as one which places great import on cost and public security¹²⁹. Electronic surveillance, needless to say, greatly facilitates that task and therefore tends to be more readily accepted, as William G. Staples points out. He submits that we are creating a “culture of surveillance” by allowing devices and processes into our lives that serve to evaluate our conduct and actions and track our every move¹³⁰.
In the same vein, Bruce Jennings observes: “the ethical and legal traditions of the United States pose the ethical dilemma as a conflict of two important principles or values – individual liberty versus prevention of harm to others, or public safety. The United States’ tradition seeks a solution to this dilemma in the notion of legitimate or authoritative protection. This involves protection of the individual from harming himself or herself and protection of others, especially those who may find themselves in harm’s way. In this stage of Alzheimer’s disease there seems little choice but to restrict individual liberty, perhaps quite severely, in order to protect public safety”¹³¹.
Similarly, in Canada, Danielle Pinard refers to the legal protection of the elderly as corresponding to a “risk management model”¹³².
Presumably then, the importance allotted public safety is rivalled only by that attached to cost¹³². As Robert Koester, neurobiologist at the University of Virginia and perhaps the leading researcher on Alzheimer’s-related wandering observes: “When you consider that a search for an Alzheimer’s wanderer can cost thousands of dollars, you can understand why law enforcement agencies want to use it”¹³⁴. As highlighted above, law enforcement may not be the only agency seeking financial relief from the burden of elder-care. Overworked, under funded and often overwhelmed health care workers or family members providing unassisted domiciliary care are in desperate search of some relief. Even more so, for-profit managed care facilities are, needless to say, eager to unearth cost-cutting measures, such as GPS technology, which, by tracking patients saves manpower costs.
Plainly put, the twin pillars of cost and safety, underlying the American approach to health care¹³⁵, risk pointing us to quick fix solutions, whose long term price, as noted, may outweigh its immediate benefits. While the use of assistive technology to forward the legitimate objectives of promoting safety and wisely saving costs should be encouraged, such encouragement should only follow sober reflection and profound cost-benefit analysis (with the word cost and benefit moving beyond financial cost or physical health benefit, as discussed). As Susan Cahill warns, “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”¹³⁶ .
Perhaps the above-described UK approach, demanding careful reflection prior to acceptance, better comports with a dignity-oriented understanding of patient’s rights. This is particularly vital in the Alzheimer’s context as “Some of the ethical and legal issues relevant to persons with Alzheimer’s disease arise because the cognitive abilities that underlie decisional capacity are disordered by the disease, but many patients, especially those at an early stage of the disease, have intact or only partially impaired decisional capacity”¹³⁷ .
It further accords with the Conservator model, an approach to health care that attaches greater import to patient rights, advocated by leading British Alzheimer specialist Tom Kitwood¹³⁸. The Conservator Model, grounded in ethics¹³⁹ and placing personhood and dignity above expediency¹⁴⁰, is one that our legislators might consider for future formulation of health care policy: “[t]he caregiving associated with the conservator model involves much more than the bed and body work that is often taken to be the sum total of care in a nursing or home care context. Care is given to the body, to be sure. But its primary object is the person, the subject, the self as an active being in the world of meaning and relationships with others. In the conservator model there is also a primary duty to sustain the individual’s moral personhood as much as possible. The basic idea here is that maintaining, sustaining, and creating relationships-connections and commitments-with the moral person is itself a duty of ethical responsibility for other individuals in the moral person’s environment”¹⁴¹.
In Ethicist Steven Sabat’s words: “…it offers an alternative approach to limiting the liberty and managing the risky behavior of patients with Alzheimer’s disease. It does so within the context of a general strategy and conception of caregiving rather than on the basis of a duty to protect third parties, the community as a whole, or individuals who are incapable of protecting themselves. As a caregiving orientation this model has three basic elements: preserving the integrity of the demented person, sustaining functional capacity, and relieving suffering”¹⁴².

III. A Final Word

As shown, conventional paradigms of rights, or even traditional legal standards such as the ‘best interests tests’¹⁴³ fail to satisfactorily address the intricate issues raised by assistive technologies in the dementia context. Instead, what can best be described as a virtual legal vacuum prevails, relegating some of society’s most vulnerable to an unexamined fate, characterized by our propensity to embrace assistive technologies prior to fully investigating the ethical dilemmas that they generate.
In an effort to improve on the current situation, this article seeks to spark meaningful multidisciplinary discussion on what appropriate safeguards may be developed – legislative or otherwise. This in order to address the ethical issues related to elder monitoring and to ultimately foster a “sensitive application” of new assistive technologies in a manner that allows technology to promote dignity in dementia care.
To borrow Margaret Sommerville’s well-expressed words in a different context: “we must establish a “questioning framework” built on a transdisciplinary, transcultural and transsectoral base that can accommodate input from members of the community and persons with relevant expertise”¹⁴⁴. The first step therefore is to actually ask some much-needed questions in order to increase understanding of the issues and allow for informed decision-making.
While it is certainly beyond the scope of this article to propose any clear resolution of the predicament, the following points may be put forward for reflection:

1. Advance Directives

In anticipation of a clearer and more permanent resolution, for the time being, it may be helpful for those diagnosed with Alzheimer’s (or in the early stages of other illnesses resulting in dementia¹⁴⁵) to avail themselves of advance directives¹⁴⁶, expressing their wishes respecting the use of GPS to track them as their dementia progresses. Though not free of controversy¹⁴⁷, what Ronald Dworkin calls “precedent autonomy”¹⁴⁸ allows a now-capable person to control decision-making at a later point in time when she no longer has the capacity to do so¹⁴⁹. Such pre-commitment would at the very least allow¹⁵⁰ the patient to regain some authority¹⁵¹ over the use of new technologies to monitor her movements¹⁵². Thus, for instance, “[i]f the incompetent was previously competent, her earlier autonomous decisions regarding medical treatment can be projected into the future once she becomes¹⁵³ incompetent. Even if the incompetent failed to make such advance decisions, her autonomy can be respected by taking the decision that she would have taken, based on evidence of her previously competent wishes, preferences and values. The best interests test is the key example of decision-making based on the protection of the incompetent’s welfare interests, and can be used regardless of whether the incompetent was previously competent”.
Having said this, advance directives are no more than ad hoc solutions. As noted, other considerations such as insurance and institutional liability¹⁵⁴ – or even family pressure¹⁵⁵ – may make these superfluous if use of these technologies becomes routine¹⁵⁶. For this reason, this author support British scholars Hughes and Low’s call for government supervision of the application of GPS surveillance technologies to dementia sufferers and others. Their suggestion to secure legislation that regulates collection of personal data through GPS devices generally and surveillance of vulnerable groups such as the aged or children specifically, is an urgent call for action meriting immediate attention here as well¹⁵⁷.
In light of the above, it is posited that assistive technology should only be made available “in circumstances where it offers immediate therapeutic benefits of proven efficacy as well as a positive benefit-risk-ratio”¹⁵⁸. In this vein, one author, dealing with GPS surveillance generally, has suggested that a model privacy law “regulate the collection and use of personal data with [both implantable and] nonimplantable [GPS] chips. Such a statute should legislate inalienabilities that place use-transfer restrictions on the personal information generated through wearable GPS devices”¹⁵⁹.
That article’s author, Paul M. Schwartz, further calls for institutions to “police the privacy promises and practices of wearable chip companies. Institutions are necessary to provide trading mechanisms to help with verification of interests in propertized personal data, and to enforce compliance with agreed-upon terms and legislatively mandated safeguards”¹⁶⁰.

2. Part of a Greater Health Care Problem

While legislation specifically pertaining to the use of GPS technology for surveillance purposes (particularly with respect to the vulnerable) is of the essence, we must nevertheless remain mindful of the fact that this specific question cannot be separated from the greater issue of health care rights.
Indeed, contrary to Hughes and Low’s call for government regulation, other English scholars responding to that groundbreaking article, argue that the answer lies not in legislation but in addressing the root causes leading to the temptation to resort to such quick fixes. Namely, the answer, they put forward, is to be found in “adequate funding of services to the population with dementia across the myriad of living situations”. In their words, “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”¹⁶¹.
Certainly, inadequate funding of institutions and support for domiciliary care¹⁶², limited resources, desperate need for some form of relief from the often unbearable burden placed on caregivers, cannot but lead to a certain temptation to reflexively resort to technology that offers the promise of reprieve. In consequence, it is suggested that facilitating carers’ life (particularly that of home-carers) would help render this technology a redundant last resort.
That having been said, as a second generation right, the right to health care, although cardinal¹⁶³, has often been more difficultly recognized (as compared to first generation individualistic rights)¹⁶⁴. Ironically, legislation ensuring the protection of conventional rights such as privacy and dignity may be more readily achieved than any hope of addressing the underlying problems plaguing the health care system¹⁶⁵. We must therefore not rely on the resolution of these underlying problems – however crucial – to address the GPS in dementia care conundrum specifically.
The modest purpose of this present endeavour, as previously stated, is not to offer precise recommendations. Indeed, doing so prior to and in absence of the above mentioned multidisciplinary reflection would be premature. It is instead aimed to draw attention to what has thus far been a “low profile” issue (to say the least)¹⁶⁶ and to likewise ensure that any responses that are ultimately offered be informed by rights¹⁶⁷ – rather than considerations relating exclusively to health. Discussion and debate, similar to that occurring in the United Kingdom, is imperative if we are to increase awareness and understanding of the issues surrounding decision-making respecting the use of assistive technologies.
In a word, “[t]he personal freedom of individuals, including those with a diagnosis of dementia, should be respected. Curtailing that freedom always requires ethical and legal justification. In general, the only justification for curtailing this freedom is to prevent harm to others or to the individual. Restrictions imposed for the protection of the individual from harm to self should be viewed with special caution to avoid over-inclusive applications of the concept of self-harm”¹⁶⁸.

Endnotes

1 Assistant Professor, University of Ottawa, Faculty of Law. Director, Human Rights Research and Education Centre, Ottawa. Faculty, Law and Technology Program.

2 Justice Cray in Union Pacific Railroad v Botsford, 141 U.S. 250 at 251 (1891).

3 UK Alzheimer’s Society Webpage
http://www.alzheimers.org.uk/News_and_campaigns/Campaigning/mentalcapacity.htm
(consulted February 3rd 2005).

4 Irwin Cotler, ‘Human Rights and the New Anti-Jewishness’, 38 Justice 24, 27 (2004).

5 In 1981, the Select Committee on Aging of the United States House of Representatives issued a landmark report entitled ‘Elder Abuse: An Examination of a Hidden Problem’, dealing with elder mistreatment, particularly in non-institutional settings. A decade later, a second report titled: ‘Elder Abuse: A Decade of Shame and Inactivity’ was issued, concluding that the situation had deteriorated (over 1.5 million people were abused yearly). On the need for elder justice legislation see John B. Breaux and Orin G. Hatch, ‘Confronting Elder Abuse, Neglect and Exploitation: The Need for Elder Justice Legislation’, 11 Elder L.J. 207 (2003).

6 See Honor Thy Mother & Father: Symposium On the Legal Aspects of Elder Abuse, Seymour Moskowitz, ‘Golden Age in the Golden State: Contemporary Legal Developments in Elder Abuse and Neglect’, 36 Loy. L.A. L. Rev. 589 (2003) discussing the elderly as an ignored group in Human Rights.

7 Michelle Stowell, ‘Chapter 434: Protecting those with Alzheimer’s Disease and Dementia’, 32 McGeorge L. Rev. 733 (2001).

8 On capacity and consent generally see Israel Doron, ‘Mental Incapacity, Guardianship, and the Elderly: An Exploratory Study of Ontario’s Consent and Capacity Board’, 18 No. 1 Can. J.L. & Soc’y 131 (2003). The issue of interesectionlities is worthy of mention although an adequate exploration of this related issue is beyond the scope of this paper. For an exploration of the gender issue in assisted suicide see Lynne Marie Kohm and Britney N. Brigner, ‘Women and Assisted Suicide: Exploring the Vulnerability to Acquiescent Death’, 4 Cardozo Women’s L.J. 241 (1998).

9 See Public Health Agency of Canada, National Advisory Council on Aging (NACA) position paper No. 23 on Alzheimer disease and related dementia at
http://www.phac-aspc.gc.ca/seniors-aines/naca/position/23_alzheimer/alzheimer6_e.htm
(visited Feb 3rd 2005): “No current students pursuing doctoral studies in this area, no grants funded, and little academic emphasis on aging, Alzheimer Disease and ethics”. NACA recommends that provincial governments and provincial Alzheimer Societies collaborate with hospital, community and long-term care providers to educate health care providers and develop guidelines/regulations regarding the use of restraints on people with Alzheimer dementia and related dementia (ADRD).

10 See House Select Committee on Aging, 96th Congress., 1ST Session., Elder Abuse: The Hidden Problem (Comm. Print 1980) Elder/Dependent Adult Abuse: Hearings Before the Cal. Assembly Comm. on Aging and Long-Term Care (1985).

11 Welsh, A. et al (2003) ‘Big brother is watching you – the ethical implications of electronic surveillance measures in the elderly with dementia and in adults with learning difficulties’, Aging & Mental Health, September 2003; 7(5): 372-5: “Electronic surveillance has insidiously seeped into the fabric of society with little public debate about its moral implications”.

12 Susan Ashcroft-Simpson, ‘Nurses and the Use of Restraints’, Education & Ageing Vol 14(1) (1999) at
http://www.triangle.co.uk/eda/14-01/Ashcroft.pdf
p.80 (last visited February 3rd, 2005).

13 Brock DW. Life and death: Philosophical Essays in Biomedical Ethics (New York: Cambridge University Press, 1993:372).

14 See A. Michael Froomkin, ‘Symposium: Cyberspace and Privacy: A New Legal Paradigm? The Death of Privacy’ 52 Stan. L. Rev. 1461, 1503 (2000).

15 Indeed, personal locators’ popularity is on the rapid increase, and these devices are increasingly replacing traditional “Safe return” identification bracelets as the ideal means for tagging and tracking dementia sufferers. See
http://alzheimers.upmc.com/GPS.htm
(last consulted April 11, 2005). Also see Alzheimer’s association website: http://www.alz.org and its Canadian counterpart’s website:
http://www.alzheimer.ca/english/safelyhome/intro.htm
(visited February 3rd 2004). The technology is described infra. While GPS is not yet part of the programme (which instead simply involves registering the patient with the society, entering their information in a police database and fitting them with a tracking bracelet) interest in GPS is on the rise (indeed, this option is refered to in the organization’s resources list
(http://www.alz.org/resources/resources/rtrlwand.asp#AlzPubSR).
POSTSCRIPT: Since the original drafting of this article, Canada’s Alzheimer;s society has posted basic ethical guidelines for the use of new technologies (including GPS) for tagging and tracking patients on its website
(http://www.alzheimer.ca/english/care/ethics-tracking.htm)

16 See Alzheimer’s association website: http://www.alz.org (visited February 3rd 2004). The technology is described infra.

17 Id.

18 This is a nationwide programme developed by the Alzheimer Society of Canada in partnership with the Royal Canadian Mounted Police. Once a person is registered, vital information is stored confidentially on a police database. The information can be accessed by police anywhere in Canada and the United States.

19 The information can be accessed by police anywhere in Canada and the United States. See American Alzheimer’s Association website (http://www.alz.org).

20 “GPS is based on a network of at least 24 satellites that continuously send out radio signals transmitting their locations. A GPS receiver back on Earth can then triangulate its three-dimensional position using the information received from at least four of the satellites. [The system is accurate anywhere on Earth to within 100 feet. Using a technique called differential GPS, users can obtain accuracies of several feet”. See Aaron Renenger, ‘Satelite Tracking and the Right to Privacy’ 53 Hastings L.J. 549, 550 (2002).

21 Id.

22 See responses to groundbreaking article by British consultant in old age psychiatry Hughes J.C. and physician Louw S.J. (2002) ‘Electronic Tagging of People With Dementia Who Wander’ British Medical Journal, 325, 847-848: Desmond O’Neil, ‘Electronic Tagging in Dementia should be reserved for babies, convicted criminals and animals’ BMJ Nov 2003; 326: 281. (14 November 2002); Susan Cahill, ‘Enabling Technologies’ (16 November 2002) BMJ Nov 2003; 326: 281.

23 Unfortunately, only the absence of literature on point can be cited as support for this assertion.

24 I am of course referring to patients registered by their families – who often protest the procedure – as section “how to convince…” attests to, rather than those who themselves chose to register.

25 Alzheimer’s association website (http://www.alz.org).

26 These rights are briefly discussed below. A more in-depth discussion, however, exceeds the parameters of this present Endeavour, whose purpose is exclusively to spark discussion by highlighting the issues.

27 inter alia as shall be discussed i.e. lack of adequate resources; unbearable burden on carers.

28 See infra.

29 When the opposite should hold true: “where rights conflict with individual or societal interests, rights generally will trump those interests and be respected and enforced by liberal democracies” Angela Campbell, ‘Stretching the Limits of “Rights Talk”: Securing Health Care Entitlements for Children’, 27 Vt. L. Rev. 399 (2003 ) citing Martha Minow, Making all the Difference: Inclusion, Exclusion and American Law 296 (1990) (discussing the concept of rights as “trumps”).

30 Difference with UK discussed infra.

31 Were it to involve anyone other than the aged, as evidenced by the heated discussion surrounding its application to convicted criminals or sexual predators infra.

32 A recent groundbreaking editorial by Julian C. Hughes, PhD, MRCPsych, of the Centre for the Health of the Elderly in the UK highlighted. See Hughes, JC and Louw, SJ (2002) ‘Electronic tagging of people with dementia who wander’ British Medical Journal 325: 847-8.

33 I.e. medical malpractice or torts as discussed briefly referred to below.

34 While it is beyond the scope of this present endeavour to furnish a thorough analysis of the insurance considerations related to routine tagging of the elderly afflicted with dementia,. The issue is certainly one of relevance which must first be raised in order to spark further debate.

35 Language used by the Supreme Court of Canada in developing its “proportionality test” in R. v Oakes [1986] 1 S.C.R. 103, 26 DLR (4th) 200 (1986).

36 David A. Schumann, ‘Tracking Evidence with GPS Technology’, 77-MAY Wis. Law. 9 (2004). See also David Cole, ‘Electronic Monitoring in Canada: Has the Time Come to take some Fundamental Decisions?’ 6 Can. Crim. L. Rev. 301 (2001) in the Canadian context.

37 Patricia A. Powers, ‘Making a Spectacle of Panopticism: A Theoretical Evaluation of Sex Offender Registration and Notification’ 38 New Eng. L. Rev. 1049 (2004).

38 Some justified others thoroughly paternalistic. See Welsh et al supra.

39 As shall be discussed, certain recourses are obstructed by law (i.e. absence of state action or government involvement), interpretation of the ‘best interests’ standard infra and others simply by circumstance (i.e. unwillingness – unwillingness or inability to pursue one’s well-intentioned (often overwhelmed) caregivers.

40 So far, only cooperation detected has been a suspect one- that between the caregiver community and law enforcement characterizing self return supra.

41 Otherwise known as “Safe Return”.

42 The author lacks the expertise to reach such a conclusion.

43 Term coined by Irwin Cotler, Address at Osgoode Hall Law School, Toronto Ontario, Canada, Raoul Wallenberg Day International Human Rights Symposium, January 17th, 2005.

44 Not a jurist Mr. Jennings teaches at the Yale University School of Medicine in the Department of Epidemiology and Public health, specializing in bioethics.(See
http://www.thehastingscenter.org/people/profiles/jennings.asp
last consulted February 20th, 2005).

45 Bruce Jennings, ‘Symposium Articles Joint Conference on Legal/Ethical Issues in the Progression of Dementia Freedom Fading: On Dementia, Best Interests and Public Safety’, 35 Ga. L. Rev. 593 (2001).

46 Medical technology now makes it possible to prolong the dying process of severely debilitated elderly patients. The majority of the aged die in hospitals or long-term care institutions, and many are sustained by artificial life-support systems throughout their final days or years of life. See Tracy L. Merritt, ‘Equality for the Elderly Incompetent: A Proposal for A Dignified Death’, 39 Stan. L. Rev. 689 (1987).

47 Canadian Press, ‘Health Advocates Call for Alzheimer’s Strategy’ (CTV Report Oct 23, 2004). See
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/1098554337074_21
(last visited February 20th, 2005).

48 North American- as both the United States and Canada’s respective Alzheimer’s associations (in contrast to Britain’s) have promoted tagging and tracking as a means for “safely returning” wandering dementia patients to their homes and alleviating the burden on caregivers- be it directly through conventional non-GPS programmes or indirectly by referring to private GPS resources.

49 See “last word” discussion, offering a brief overview of the potential financial considerations arising from routine electronic monitoring of dementia patients, including higher malpractice insurance premiums and risks of liability for those caregivers who refuse to avail themselves of such devices, particularly if this refusal is deemed unreasonable in light of general practices.

50 See Ronald Dworkin’s discussion of advance directives in ‘Lecture in Jurisprudence and Public Policy: Justice in the Distribution of Healthcare’, 38 McGill L.J. 883 (1993) (He cites Descartes referring to healthcare as the first right (at 885).

51 David A. Schumann, ‘Tracking Evidence with GPS Technology’, 77-MAY Wis. Law. 9 (2004) for a thorough explanation of GPS functioning.

52 See, e.g. State v Jackson 150 Wash. 2d 251, 259-60, 76 P.3d 217, 222 (2003) [a state case] holding that police installation of Global Positioning System (GPS Tracking Device) device on murder suspect’s vehicle infringes upon Washington state constitutional right to privacy and therefore requires a search warrant); A thorough discussion (that exceeds the scope of this article) may be found in David A. Schumann, ‘Tracking Evidence with GPS Technology’, 77-MAY Wis. Law. 9 (2004).

53 Whether that includes employees – through the use of employer property is not definitely settled. Id.

54 See note 58 supra.

55 Id. E.g.: “stalking statutes”- 2003 Assembly Bill 738 (introduced Jan. 7, 2004 and signed into law by Gov. Doyle on April 12, 2004) changes Wis. Stat. section 940.32 to include monitoring a victim by electronic means as part of a stalking “course of conduct” that an actor “knows or should have known” would cause the victim fear of bodily injury or serious emotional distress.

56 See discussion of US Model Anti-Stalking Code; See on stalking Laurence M. Friedman, ‘The One Way Mirror: Law Privacy and the Media’, 82 Wash. U. L.Q. 319 (2004); Nga B. Tran, ‘A Comparative Look at Anti-Stalking Legislation in the United States and Japan’, 26 Hastings Int’l & Comp. L. Rev. 445; Model Anti-Stalking Code, Nat’l Inst. Of Justice, U.S. Dep’t of Justice, Project To Develop a Model Anti-Stalking Code for States 12 (1993) See B. Benjamin Haas, Comment, ‘The Formation and Viability of Anti-Stalking Laws’, 39 Vill. L. Rev. 1387 & n.2 (1994). In Canada, there is a requirement for “reasonable fear” s. 264 Criminal Code R.S.C. 1985, c. C-46, s. 264 (known as the offence of “criminal harassment”).

57 The US Model Penal Code (1962) defines stalking as: (Section 2). “Any person who:
purposefully engages in a course of conduct directed at a specific person that would cause a reasonable person to fear bodily injury to himself or herself or a member of his or her immediate family or to fear the death of himself or herself or a member of his or her immediate family; and
has knowledge or should have knowledge that the specific person will be placed in reasonable fear of bodily injury to himself or herself or a member of his or her immediate family or will be placed in reasonable fear of death of himself or herself or a member of his or her immediate family; and
whose acts induce fear in the specific person of bodily injury to himself or herself or a member of his or her immediate family or induce fear in the specific person of the death of himself or herself or a member of his or her immediate family; is guilty of stalking”.

Florida law defines a stalker as any person who “willfully, maliciously, and repeatedly follows or harasses another person. Fla. Stats. Ann. §784.048(2) (West 2000).

In Canada, Section 264 of the Criminal Code supra. provides:
264.(1) No person shall, without lawful authority and knowing that another person is harassed or recklessly as to whether the other person is harassed, engage in conduct referred to in subsection (2) that causes that other person reasonably, in all the circumstances, to fear for their safety or the safety of anyone known to them.
(2) The conduct mentioned in subsection (1) consists of
(a) repeatedly following from place to place the other person or anyone known to them;
(b) repeatedly communicating with, either directly or indirectly, the other person or anyone known to them;
(c) besetting or watching the dwelling-house, or place where the other person, or anyone known to them, resides, works, carries on business or happens to be; or
(d) engaging in threatening conduct directed at the other person or any member of their family.
(3) Every person who contravenes this section is guilty of
(a) an indictable offence and is liable to imprisonment for a term not exceeding five years; or
(b) an offence punishable on summary conviction.

58 Id.

59 Waseem Karim, ‘The Privacy Implications of Personal Locators: Why You Should Think Twice Before Voluntarily Availing Yourself to GPS Monitoring’, 14 Wash. U. J.L. & Pol’y 485, 511 (2004) ‘You get What You Pay for and so does the Government… How law Enforcement Can use Personal Locators to Track your Every Move’, 6 N.C. J. L. & Tech. 165 (2004).

60 The tort of invasion of privacy for instance (unclear in the Canadian Common Law provinces), Quebec Charter.

61 See Recommendations of the Joint Conference supra. 35 Ga. L. Rev. 423 (2001).

62 Inter alia, as the Alzheimer’s society recently lamented, supra.

63 As noted above, ties into general issue of health care rights, which exceeds to specific parameters of this present discussion.

64 Bruce Jennings, ‘Freedom Fading: On Dementia, Best Interests and Public Safety’, 35 Ga. L. Rev. 423 (2001).

65 “Although not officially subject to the Canadian Charter of Rights and Freedoms (Part I of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (U.K.). 1982, c. 11), even matters of “private” ilk must be decided respecting the spirit of the Charter. See Justice Dickson (as he then was) in Hunter v Southam Inc, [1984] 2 SCR 145, 11 D.L.R. (4th) 641, holding that Section 8 seeks to supply “a broader protection of the individual’s right to privacy than could be found in traditional Common Law doctrines”.

66 As noted the criminal law would of course be inappropriate, thus leaving us in a legal vacuum.

67 Compare the situation in the U.S. with that in Britain, as discussed infra.

68 “Safely home” (http://www.alzheimers.ca) and “Safe return” (http://www.alz.org) respectively.

69 See brief discussion of whether tagging and tracking constitutes “restraints” infra.

70 This proverbial idiom probably derives from a similar statement by St. Bernard of Clairvaux about 1150, L’enfer est plein de bonnes volontés ou désirs (“Hell is full of good intentions or wishes”).

71 In Canada, under the various provincial Human Rights Charters, a third party or interest group may have standing whereas a private action (under either provincial human rights documents or tort law is unlikely to be brought by the elder with dementia, or her representative, who is generally the one either requesting that the elder be tracked or consenting to her surveillance.

72 Id.

73 Cited by Angela Campbell, ‘Stretching the Limits of “Rights Talk”: Securing Health Care Entitlements for Children’, 27 Vt. L. Rev. 399 (2003 ) at fn 135: “Rather than portraying rights-bearers as autonomous individuals with competing interests, they constructed a framework that reflects our needs and capacities and entwines these factors through a network of social relations (citing Carol Gillian, ‘In a Different Voice: Psychological Theory and Women’s Development’ 19, 147 (1982); Martha Minow, supra. and Jennifer Nedelsky, ‘Reconceiving Rights as Relationship’, 1 Rev. Const. Stud. 1-2 (1993), at 11-13 (asserting that the notion of individual is flawed, since humanity is comprised of a network of relationships, and individuals are shaped and influenced in their choices by those relationships); and Schneider, Elizabeth M. Schneider, ‘The Dialectic of Rights and Politics: Perspectives from the Women’s Movement’, 61 N.Y.U. L. Rev. 589, 597-98 (1986) (arguing that feminist rights critique, which is based on patriarchy, fails to consider the “relationship between the assertion of rights and political struggle in social movement practice”), at 619-25 (discussing how feminist thought evolved to center around the notion of “interdependent” rights).

74 Id. in context of children (as there are many important parallels between children and the aged in terms of vulnerability, dependence and the use of similar legal standards): As Campbell correctly observes (Ibid at 400) “the traditional understanding of rights presumes an autonomous rights-holder, who is able to independently recognize and exercise her legal claims”.

75 Id.

76 35 Ga. L. Rev. 621, 622 (2001).

77 Angela Camplbell, ‘Stretching the Limits of “Rights Talk”: Securing Health Care Entitlements for Children’, 27 /Vt. L. Rev./ 399 399, 400, 400 (2003).

78 For more specific parallels on point with (older) children, see also Devanshi P. Patel, ‘Should Teenagers Get Lojacked Against their Will? Fascinating parallels’ 47 How. L.J. 429 (2004); For an actual discussion of the parallels between elder’s and children’s rights see Nina A. Kohn, ‘Second Childhood: What Child Protection Systems can Teach Elder Protection Systems’, 14 Stan. L. & Pol’y Rev. 175 (2003): “Looking to systems designed to address child maltreatment to reduce elder mistreatment is not new. Health care workers and policy makers have long considered elder mistreatment to be analogous to child maltreatment. When arguing that more attention should be paid to elder abuse, both groups have cited America’s approach to child maltreatment as superior. This has had a significant effect on elder care policies. For example, elder protective services are frequently patterned on child protective services”.

79 See that Israel Doron’s discussion supra.

80 Much ink has been spilled respecting the difficulties associated with the “best interests” standard, particularly in the family law context (though lacks profound exam in its application to elders…). See, for instance, Shauna Van Praagh, ‘Faith Belonging and the Protection of “Our” Children’, 17 Windsor Y.B. Access to Just. 154 (1999); S. Van Praagh, ‘Religion, Custody and a Child’s Identities’ 35 Osgoode Hall L.J. 309 (1997); C. Bernard, R. Ward & B. Knoppers, ‘Best Interests of the Child’ Exposed: A Portrait of Quebec Custody and Protection Law’, 11 Can. J. Fam. L. 57 (1992).

81 See the Supreme Court of Canada’s decision in Janzen v Janzen (2002), 44 E.T.R. (2d) 217 (Ont. S.C.J.), in which the “the concept of “well-being” [is considered to be] a very broad concept which Encompasses many considerations, including quality of life”.

82 Nancy B. v L’Hôtel-Dieu de Québec (1992), 86 R.J.Q (4ème)385 (Qué.SC); Malette v Shulman (1990), 72 O.R. (2d) 417, 67 D.L.R. (4th) 321 (C.A.) Human dignity has therefore been held to outweigh even life saving treatments (such as blood transfusions), as illustrated by the above case (involving a Jehovah’s Witness’ refusal to be transfused and in Astaforoff (British Columbia (A.G.) v Astaforoff (1983), [1984] 6 W.W.R. 385, 6 C.C.C. (3d) 498 (B.C.C.A.). In these cases, the Court rejected a “life at any cost” approach to health policy. See Bernard M. Dickens, ‘Case Comment: Medically Assisted Death Nancy B. v. Hotel-Dieu Hospital’, 38 McGill L.J. 1053 (1993). In the U.K, see Airedale NHS Trust v Bland, [1993] 1 All ER (HL) 821, the landmark case in which the court allowed the removal of a feeding tube from a patient in a permanent vegetative state. In the Schiavo case in the U.S., a Florida Court ordered a feeding tube removed from a woman in a vegetative state and then struck down legislation ordering the tube reinserted. See Press Release, Voice of America, U.S. State Court Strikes Down Law Keeping Brain-Dead Woman Alive (Sept. 24, 2004), available at 2004 WL 92188293. For more information about Terri Schiavo generally, see Terri Schindler-Schiavo Foundation, at http://www.terrisfight.org (last updated Oct. 5, 2004).

83 As noted above, some interesting parallels with children’s rights are worthy of further exploration. Thus, for instance dementia and old age has been referred to as a “second childhood”. See Barney Sneiderman, Book Review Sheila A.M. McLean, ‘Contemporary Issues in Law and Medecine’, 26 Queen’s L.J. 603 (2001). Also see Jane Spencer, Tracking the Kids by Satellite, Wall St. J., Feb. 18, 2003, at D1.

84 Not to mention its capacity to alleviate caregivers’ worry.

85 I.e. in Germany. See Judgment of the Bundesverfassungsgericht (Federal Constitutional Court), 28.5. 1993, BVerfGE 88, 203, upholding the criminalization of abortion on the basis of the State’s constitutional duty to protect life.

86 Particularly with respect to assisted suicide.

87 The Canadian Charter of Rights and Freedoms relevant sections 15 (equality, which subsumes dignity), 7 (security of the person), 8 (privacy); these rights are similarly found in provincial human rights code. While not directly applicable, several provisions of the U.S. the Fourth and Fourteenth Amendment’s respective due process equal protection, in addition to privacy – gleaned from the First Amendment through the “penumbra” concept (see Griswold v Connecticut, 381 U.S. 479, 484 (1965)) – may be relevant.

88 Tom Kitwood, Dementia reconsidered: The Person Comes First (Open University Press: Buckingham, 1997), revisits the psychological needs of people with dementia i.e. love, dignity, which are not simply physical.

89 S. Dodds, ‘Exercising restraint: autonomy, welfare and elderly patients’, 22 J Med Ethics 160-163 (1996).

90 With respect to driving, Edward P. Richards notes: “it would be difficult to justify blanket rules that prohibit all persons diagnosed with Alzheimer’s disease from driving because such rules would improperly limit the lives of a large number of persons who do not yet pose any threat to others”. 35 Ga. L. Rev. 621, 625 (2001).

91 See Jennings id.

92 Ram N Valle, ‘Ethics, Ethnicity and Dementia: A “Culture Fair” Approach to Bioethical Advocacy in Dementing Illness’, 35 Ga. L. Rev. 465 (2001) (citing Post et al Linda Farber Post et al., Pain: Ethics, Culture, and Informed Consent to Relief, 24 J. L. Med. & Ethics 348, 355 (1996).

93 Ram N Valle, ‘Ethics, Ethnicity and Dementia: A “Culture Fair” Approach to Bioethical Advocacy in Dementing Illness’, 35 Ga. L. Rev. 465 (2001).

94 Citing (Moss & LaPuma 1991, in Ashcroft-Simpson supra. The degree to which the psychiatric patient’s bodily integrity is protected by the right to refuse treatment turns on whether the patient is found to have the capacity to make such a decision. Most jurisdictions prefer what is known as a “Functional” approach to capacity. Thus, for instance, in Quebec law, “the determination of capacity to consent to treatment is a question of fact and is based on the patient’s ability to make the decision at hand-Delisle J.A, “Il peut fort bien arriver qu’une personne soit incapable d’ administrer ses biens, tout en étant parfaitement consciente de ses besoins de santé.” (It can very well be the case that a person who is incapable of administering their property would otherwise be fully aware of their health needs” [1994] R.J.Q. 2523 at 2529 (C.A.).

95 Bruce Jennings, ‘A Life Greater Than the Sum of Its Sensations: Ethics, Dementia, and the Quality of Life’, in Assessing Quality of Life in Alzheimer’s Disease 165 (Steven M. Albert & Rebecca G. Logsdon eds., 2000).

96 Ageism & stigmatization (Proctor 2001).

97 See Ashcrtoft-Simpson supra regarding stigma at
http://www.triangle.co.uk/eda/14-01/Ashcroft.pdf p. 80.

98 http://www.mentalhealth.org/suicideprevention/elderly.asp
he highest suicide rates of any age group. occur among persons aged 65 years and older. See also
http://www.ioaging.org/programs/cesp/sfacts.html.

99 Often frozen to death or dehydrated.

100 U.K. Alzheimer’s Society position paper at
http://www.alzheimers.org.uk/News_and_Campaigns/Policy_Watch/electronictagging.htm
(February 15th, 2005).

101 BMJ 2002;325:847-848 ( 19 October 2003).

102 John Hughes citing McShane R, Gelding K, Kenward B, Kenward R, Hope T, Jacoby R. The feasibility of electronic tracking devices in dementia: a telephone survey and case series. Int J. Geriatric Psychiatry 1998; 13: 556-563.

103 See discussion on identity of interests regarding liability supra.

104 As noted by the UK position paper, discussed infra: a balance needs to be struck between the benefits to the individual concerned and the infringement of a person’s civil liberties.

105 See Dennis E. Cichon, ‘The Right to “Just Say No”: A History and Analysis of the Right to Refuse Antipsychotic Drugs,’ 53 L.A. L. Rev. 283 n.4 (1992). That’s why input of other professions is so essential.

106 Penney Lewis, ‘Procedures that are Against the Medical Interests of Incompetent Adults’, 22 Oxford J. Legal Stud. 575 (2002) Health professional in a better position to assess these.

107 R. Dresser, ‘Missing Persons: Legal Perceptions of Incompetent Patients’, 46 Rutgers L. Rev. 609, 635 (1994).

108 “They cite increased opportunity for abuse through, for example, the withdrawal of staff and financial resources from the care of people with complex needs. Implementing these technologies, therefore, has ethical implications for human rights and civil liberties” Welsh, A et al (2003) ‘Big brother is watching you – the ethical implications of electronic surveillance measures in the elderly with dementia and in adults with learning difficulties’. Aging and Mental Health 7(5): 372-5.

109 Blackburn P., ‘Freedom to Wander’, Nursing Times 1988; 84: 54-55.

110 The feasibility of electronic tracking devices in dementia: a telephone survey and case series. McShane R, Gedling K, Kenward B, Kenward R, Hope T, Jacoby RInt J Geriatr Psychiatry 1998 Aug;13(8):556-63.

111 See “A Final word” for additional discussion. Although it exceeds the parameters of this paper to go into the details of a caregiver’s potential liability arising from harm caused by an Alzheimer’s patient, an interesting discussion on one aspect can be found by Edward P. Richards in ‘Public Policy Implications of Liability Regimes for Injuries Caused by Persons with Alzheimer’s Disease’, 35 Ga. L. Rev. 621 (2001).

112 See Nicholas P, Terry, ‘An EHealth Diptych: The Impact of Privacy Regulation on Medical Error and Malpractice Litigation’, 27 Am. J.L. & Med. 361 (2001).

113 I. Berlin ‘Equality as an Ideal’ in F.A. Olafson (ed.) Justice and Social Policy (Englewood Cliffs, N.J.: Prentice-Hall 1961) 137 cited in David M. Beatty, ‘The Canadian Concept of Equality’, 46 U. Toronto L.J. 349 (1996).

114 Susan Ashcroft Simpson, ‘Nurses & the use of restraints’, Education & Ageing vol 14(1) 1999 H,T. Brower 1992 p. 50 (Journal of Elder Abuse & Neglect 4(4)).

115 “Post et al. term a cultural lens to bioethical decision-making processes in dementing illness.” Linda Farber Post et al., ‘Pain: Ethics, Culture, and Informed Consent to Relief’, 24 J. L. Med. & Ethics 348, 355 (1996).

116 Ram N. N Valle ‘Ethics, Ethnicity and Dementia: A “Culture Fair” Approach to Bioethical Advocacy in Dementing Illness’, 35 Ga. L. Rev. 465 (2001) (citing Post et al Linda Farber Post et al., Pain: Ethics, Culture, and Informed Consent to Relief, 24 J. L. Med. & Ethics 348, 355 (1996).

117 Instead, it is imperative to examine a particular patient’s ability to contribute to the decision making regarding health-related decision (irrespective of their legal incompetence to manage their own affairs).

118 Of course this is more along a spectrum than any didactic dichotomy.

119 Although Canada would consider itself more akin to UK model in principle, in practice it has gone the way of US, implementing GPS monitoring for Alzheimer’s patients (see http://www.Alzheimers.ca/).

120 See respective websites advocating such a programme i.e. http://www.alz.ca FAQ 5. What if the person takes off the bracelet and won’t wear it?: “One strategy you might try is to present the bracelet as a gift. This may help the person accept it more easily. You’ll also find three identification cards in the back sleeve of the Caregiver Handbook that you’ll receive. Be sure to fill these out and put one in the person’s purse or wallet”.

121 http://www.alzheimers.org.uk/News_and_Campaigns/Policy_Watch/electronictagging.htm

122 http://www.triangle.co.uk/eda/14-01/Ashcroft.pdf p80.

123 See UK Alzheimer’s society position paper:
http://www.alzheimers.org.uk/News_and_Campaigns/Policy_Watch/electronictagging.htm
(consulted February 14th 2005).

124 “Electronic tagging has the potential to ease the concern and worry that carers may have about the person they care for… The Society is keen to point out that what is perceived to be ‘wandering’ is often not a problem for the person with dementia” Position paper:
http://www.alzheimers.org.uk/News_and_Campaigns/Policy_Watch/electronictagging.htm
(consulted February 14th 2005).

125 i.e. “life-saving technology”.

126 Welsh, A et al (2003) ‘Big brother is watching you – the ethical implications of electronic surveillance measures in the elderly with dementia and in adults with learning difficulties’. Aging and Mental Health 7(5): 372-5. Hughes, J.C. and Louw, S.J. supra (2002) ‘Electronic tagging of people with dementia who wander’. British Medical Journal 325: 847-8; Bewley, C (1998) Tagging: a technology for care services? Values into Action, London.

127 Bruce Jennings, supra.

128 As evidenced by our acceptance and indeed promotion of the safely home.

129 See William G. Staples, The Culture of Surveillance: Discipline and Social Control in the United States 28 (1997).

130 Id.

131 Jennings supra.

132 Poirier supra.

133 For a discussion of cost and insurance considerations in the American context see Mark A. Rothstein, ‘Predictive Genetic Testing for Alzheimer’s Disease in Long Term Care Insurance’, 35 Ga. L. Rev. 707 (2001); Christine R. Kovach, ‘Alzheimer’s Disease: Long-Term Care Issues’, 12 Issues L. & Med. 47 (1996).

134 Cynthia Kuhn PhD and Wilkie Wison PhD, ‘Tagging’ Alzheimer’s Patients: Electronic Devices Deter Wandering Off, but at What Cost?’ WEB MD
http://aolsvc.health.webmd.aol.com/content/Article/52/50224.htm
(last visited February 20th 2005).

135 Particularly with respect to for-profit managed care.

136 Susan Cahill Susan Cahill, ‘Enabling Technologies’ (16 November 2002) BMJ Nov 2003; 326: 281.

137 Peter V. Rabins ‘Joint Conference on Legal/Ethical Issues in the Progression of Dementia: Dementia and Alzheimer’s Disease- An Overview’, 35 Ga. L. Rev. 451(2001).

138 Agnieszka Jaworska, ‘Respecting the Margins of Agency: Alzheimer’s Patients and the Capacity to Value’, 28 Phil. & Pub. Aff. 105 (1999). For a discussion of Alzheimer’s, see generally Tom Kitwood, Dementia Reconsidered (1997); Tom Kitwood, Towards a Theory of Dementia Care: The Interpersonal Process, 13 Ageing & Soc’y 51 (1993); Tom Kitwood & Kathleen Bredin, Towards a Theory of Dementia Care: Personhood and Well-being, 12 Ageing & Soc’y 269 (1992); Steven R. Sabat & Rom Harre, The Construction and Deconstruction of Self in Alzheimer’s Disease, 12 Ageing & Soc’y 443 (1992).

139 “It is grounded on an ethic of care and on a hermeneutic understanding of the dynamics of self-identity and self-transformation in dementia and of the dynamics of the caregiving relationship in dementia”.

140 Echoed in A U.K. “Patients’ Charter”, first introduced in 1992, now replaced by a NHS “Guide”,-
http:// www.doh.gov.uk/newsdesk/ archive/jan2001/4-naa-26012001.html,
with the aim of improving the quality of health service delivery. The Charter published standards of service that people should expect.

141 Steven R. Sabat, Voices of Alzheimer’s Disease Sufferers: A Call for Treatment Based on Personhood, 9 J. Clinical Ethics 46 (1998).

142 Id.

143 As indicated above.

144 Margaret A. Somerville, ‘Preface: Dealth Talk in Canada: The Rodriguez Case’, 39 McGill L.J. 602 (1994).

145 “[A]s diagnostic tests are developed that allow Alzheimer’s disease to be diagnosed long before it affects behavior” see Edward P. Richards 35 Ga. L. Rev. 621, 624 supra.

146 The wishes of the patient are to be considered by the substitute decision-maker at two stages under the Act: 1) in acting in accordance with a prior capable wish applicable to the circumstances pursuant to section 21(1)1; and 2) In determining the incapable person’s best interests pursuant to section 21(2) where there is no capable wish applicable to the circumstances.

147 R. Dresser refers to this as a “quick fix” (see R. Dresser, ‘Missing Persons: Legal Perceptions of Incompetent Patients’, 46 Rutgers L. Rev. 609, 635 (1994); See also Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge: Cambridge University Press, 1989), 422 PP.

148 Ronald Dworkin, ‘Autonomy and the Demented Self’, 64 Milbank Q. 4, 10 (Supp. 2 1986).

149 Ronald Dworkin, ‘Autonomy and the Demented Self’, 64 Milbank Q. 4, 10 (Supp. 2 1986).

150 For a more detailed discussion of living wills and pre-commitment (or advance directives), see Leslie Pickering Francis, ‘Decision Making at the End of Life: Patients with Alzheimer’s or Other Dementias’, 35 Ga. L. Rev. 539 (2001); For a critique see Rebecca Dresser, ‘Precommittment: A Misguided Strategy for Securing Death with Dignity’, 81 Tex. L. Rev. 1823 (2003).

151 Although not foolproof.

152 Nancy Neveloff Dubler, ‘Creating and Supporting the Proxy Decision-Maker: The Lawyer Proxy Relationship’, 35 Ga. L. Rev. 517, 535 (2001): “I would suggest that there is a powerful lesson here for attorneys counseling patients who face the prospect of increasing dementia. The first lesson is that, if the patient has a trusted and loved person who can be appointed as a health care proxy agent that is the much preferred sort of advance directive for the patient to execute. Especially in dementia, where cognitive decline can proceed far more quickly than physical deterioration, the existence of a proxy to weigh possible interventions against past wishes and present situation is critical”.

153 Penney Lewis, ‘Procedures that are Against the Medical Interests of Incompetent Adults’, 22 Oxford J. Legal Stud. 575 (2002).

154 Of care institutions and health care professionals, as discussed supra. An in-depth analysis of these issues is beyond the scope of this article.

155 Given the convenience this technology allots family members and caregivers generally, as discussed . supra

156 As discussed supra.

157 Call was for the UK.

158 Patrik S. Florencio, ‘Genetics, Parenting, and Children’s Rights in the Twenty-First Century’, 45 /McGill L J /527, at 557 (2000); this assertation is made in the context of genetic testing.

159 Paul M. Schwartz, ‘Property, Privacy and Personal Data’, 117 Harv. L. Rev. 2055 (2004). See also Radin cited by Schwartz who objects to any “waiver of all personal privacy rights” and calls on policymakers to exclude such a decision “on autonomy grounds”. Margaret Jane Radin, ‘Humans, Computers, and Binding Commitment’, 75 Ind. L.J. 1125, 1159, 1161 (2000).

160 Id.

161 BMJ, February 1, 2003; 326(7383): 281.

162 On the right to health care in Canada generally see Douglas E. Angus, ‘Some Thoughts on Rights and Responsibilities in Healthcare’, 11 Nat. J. Const. L. 261 (1999-2000); Sharon Sholzberg-Gray, ‘Accessible Healthcare as a Human Right’ 11 Nat’l J. Const. L. 273 (1999-2000) and Colleen M. Flood, Tracey Epps, ‘Waiting for Health Care: What Role for a Patients’ Bill of Rights?’ 49 McGill L.J. 515 (2004).

163 See R. Dworkin citing Descartes supra.

164 Exceeds parameters of this discussion see Louis Henkin, Gerald Neuman, Diane F. Orentlicher and David Leebron, Human Rights (New York: Foundation Press, 1999) for more detailed analysis on point. “An additional difficulty with basing legal claims on rights is that rights impose a correlated obligation on other individuals, institutions, or the state. Even if a right is recognized, it has little value unless it can be enforced”.

165 For discussion of accessible healthcare as a Charter right and the erosion thereof see Marco Laverdière, ‘Le cadre juridique canadien et québécois relatif au développement parallèle de services privés de santé et l’article 7 de la Charte canadienne des droits et libertés’, 29 R.D.U.S. 117 (1998-1999).

166 ‘Joint Conference on Legal/Ethical Issues in the Progression of Dementia: Foreword’, 35 Ga. L. Rev. 391(2001).

167 inter alia. See Professor Ball: “One of the interesting aspects of the tagging trend is the relative nonchalance with which it treats the question of the offender’s body. This most personal of possessions is treated as if it were fairly insignificant property of which the authorities can make pragmatic use under the circumstances. As for the tagged offender, he or she is expected to feel no significant sense of intrusion with respect to the tagging of this most personal property, without which all other property would be not only useless but meaningless.45 R.A. Ball, ‘Legal Issues in Electronic Tagging of Offenders in the Home: Examples from the United States’ (1989) 4 Yearbook of Law Computers and Technology 143 at 155-6.

168 Joint Conference on Legal/Ethical Issues in the ‘Progression of Dementia: Recommendations’, 35 Ga. L. Rev. 423, 427 ff. (2001).

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