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Dementia is a global problem. It is an increasing concern as populations age, especially in the low and middle-income countries where the prevalence will rise the most. But it is a conceptually complex notion. The push for earlier diagnosis can be seen as a move to medicalize normal aging. The hypercognitive bias of society tends to undervalue those who are cognitively impaired and poses a threat to their standing as persons. This is seen in some narrow understandings of competence. This leads to an ethical imperative in favor of a broader notion of personhood in dementia. But beyond these large conceptual concerns, there is also a host of other ethical issues which arise in connection with dementia: consent, taking over tasks, sexuality, wandering, assistive technology, driving, therapeutic lying, stigma, and so on. A variety of ethical approaches might be taken toward individual problems, but the need is to see the differences between the particular issues for the people involved and to treat persons individually. The importance of personhood (the need for person centered care), therefore, runs through any discussion of ethical issues in dementia, but so too – on a global scale – does the need for solidarity.
Dementia is a global issue. In the analysis carried out by Alzheimer’s Disease International (ADI) (2009), it was estimated that 35.6 million people worldwide would have dementia in 2010 and that this prevalence would increase to 65.7 million in 2030 and to 115.4 million by 2050. The prevalence of dementia goes up as populations age, and most of the increase in the number of people living with dementia over the next 40 years is likely to come from low-and middle-income countries.
Being a chronic and usually progressive condition, dementia elicits a number of ethical issues common to such conditions. For instance, there will often be questions about the relevance of particular treatments during the course of the disease. But beyond this there is a host of other ethical and legal questions that lurk around the issue of decision-making capacity or competence. It is typical in dementia that the person’s decision-making abilities fade, which is often regarded as the key feature of dementia from an ethical and legal point of view. But the issues that arise in connection with dementia are much broader than the narrowness suggested by legal concepts. These very concepts intersect with deeper issues to do with the person and the nature of personhood. Indeed, it is quite plausible to consider that the ethical issues that arise in connection with dementia are mostly issues to do with the nature of personhood or selfhood. Certainly, dementia, as a disease, places personhood – or at least respect for personhood – in jeopardy.
Background History And Development Of Thought
Before looking at particular issues in bioethics in connection with dementia, however, it is now possible to look back at how the ﬁeld of thought has developed. Of course, dementia is an ancient concept, and it appeared in vernacular use in Europe after the seventeenth century (Berrios 2010). But scientiﬁc understanding of dementia is relatively recent. Aloïs Alzheimer (1864–1915) described the pathology of Alzheimer’s disease in 1907. Serious study of the dementias only really got going after the Second World War. For a long while the dementias continued to be regarded as conditions for which nothing could be done. In Western developed countries, until late in the twentieth century, people with dementia were often to be found in the backwards of old-style asylums with little active management. This attitude is still to be found in some parts of the world and poses an ethical challenge.
A variety of scientiﬁc and social factors came together to bring about change. In the 1990s the ﬁrst drugs for the treatment of Alzheimer’s disease emerged. All of this is to the good: people with dementia, their carers, and professionals working in the ﬁeld attest to the beneﬁts of these advances. But three points arise. First, the beneﬁts of treatment are not equally distributed. The ADI Report on the beneﬁts of early diagnosis and intervention (ADI 2011) suggests that 60 % of people with dementia living in high-income countries and 90 % living in low and middle-income countries have not received a diagnosis. Therefore, they suggest, up to 28 million of the 36 million people in the world with dementia do not receive evidence-based treatment and care. The authors of the report call this “gross neglect, and a tragic missed opportunity to secure outcomes for people with dementia, their families, and society” (ADI 2011, p. 26). And, of course, by their own reckoning, if it is gross neglect, it is neglect mostly in low and middle-income countries where healthcare resources and social attitudes, along with economic conditions, mean that the poorest people in the world with dementia are the least likely to receive treatment. On a global scale, therefore, there exists an ethical issue about resource allocation. A similar bioethical concern exists within high-income countries between the rich and poor.
Secondly, the whole business of making a diagnosis is not uncontroversial. The pressure to make an earlier diagnosis is, accordingly, more controversial still. The ADI Report (2011) highlights the evidence in favor of making an early diagnosis but also demonstrates just how thin that evidence seems to be. This suggests that there is an ethical requirement for more research. Just as some have questioned the value of early diagnosis in real terms, so too there is at least the suggestion that much of the research in this area reﬂects the interests of those involved. Thus, drug companies would beneﬁt hugely if it were shown that a drug given in the earliest (or even pre-dementia) stage of the condition could cure or signiﬁcantly ameliorate the effects of dementia. Nevertheless, drug companies seem to have pulled out of research looking at the basic science of dementia because it has become increasingly apparent that the biology is so complex that the likelihood of a major therapeutic breakthrough seems remote. Because of these global demographic pressures, however, in December 2013 the G8 countries pledged to increase efforts to ﬁnd a cure or disease modifying agent for dementia by 2025. From the global bioethical perspective, there are opposing intuitions in response to these political developments. On the one hand, given the extent of the problem worldwide, it seems appropriate and laudable that the richer nations should be pushing forward and investing in research that might help to decrease the suffering associated with dementia. On the other hand, it may be that the fruits of this labor, both in terms of immediate proﬁts and in terms of availability, will go to the richer nations to the detriment of the poorer nations.
Thirdly, the advances that were seen at the end of the twentieth century in terms of the understanding and treatment of dementia established the focus ﬁrmly on the cognitive features of dementia, in particular on loss of memory. In the current century the noncognitive features of dementia, which were well recognized even when dementia was ﬁrst characterized, have increasingly become the focus of attention. In part this reﬂects the recognition that many of the really difﬁcult problems associated with dementia, certainly as far as family carers are concerned, but also for people with dementia, stem from noncognitive features of the condition. Agitation, frustration, poor sleep, anger, shouting, hallucinations and illusions, depression, anxiety, and “wandering” are all potentially signiﬁcant problems. Further, physical conditions associated with dementia, particularly in its later stages, but earlier too, are increasingly recognized: pain, constipation, weight loss, difﬁculty swallowing, falls and immobility, consequent pressure sores, repeated fevers, infections, and so on. All of these problems are often more of a worry for those involved than the relatively straightforward problems associated with memory loss. Nevertheless, cognitive problems in themselves can be devastating, for example, when the mother with dementia no longer recognizes her daughter, and (of course) cognitive and noncognitive problems go together. The noncognitive frustration and depression may well reﬂect an awareness of the loss of cognitive skills, not solely the loss of memory but problems of praxis (difﬁculties executing actions) and visuospatial difﬁculties too.
People with dementia have been thought of in cognitive terms. Meanwhile, the notion of a person has often been given a narrow deﬁnition using ideas associated with consciousness and memory. It was John Locke (1632–1704) who deﬁned the person in this way:
… a thinking intelligent being, that has reason and reﬂection, and can consider itself as itself, the same thinking thing, in different times and places; which it does by that consciousness which is inseparable from thinking, and .. . essential to it (Locke 1690, II.xxvii.9).
But this poses a distinct threat to people with dementia who cannot recall things, particularly about themselves. Thus Locke writes: “as far as this consciousness can be extended backwards to any past action or thought, so far reaches the identity of that person” (Locke 1690, II.xxvii.9). Hence, it can reasonably be argued, according to this Lockean view, that the person with dementia is not the same person that he or she once was. At issue here are distinctions between quantitative and qualitative understandings of what it is to be the same person. Meanwhile, the Lockean view has been ﬁrmly picked up by the contemporary philosopher Derek Parﬁt in his book Reasons and Persons (Parﬁt 1984). Parﬁt speaks of “psychological continuity” and “psychological connectedness.” An individual is thought of as the same person inasmuch as the individual demonstrates these phenomena: psychological states, including memories, must show the requisite connections to allow the continuity which constitutes personal identity. And it is precisely on these grounds that it can be argued that people with dementia have lost personhood.
Some ethicists have reached the conclusion that the person with dementia now is not the same person as he or she once was. This has led to concerns about how an advance directive could be valid for this person now if it were made by a different person in the past. Others have taken an extreme view and suggested that the person with severe dementia does not exist at all because he or she lacks the required psychological continuity and connectedness.
The cognitive focus inﬂuenced much of the earlier literature on bioethical issues in dementia. At the forefront of thinking about bioethics and dementia has been Stephen Post, whose book The Moral Challenge of Alzheimer’s Disease was ﬁrst published in 1995 but reﬂected work published throughout the 1990s. The second edition appeared in 2000 (Post 2000). This work covers a variety of biomedical issues: end-of-life care, including arguments against assisted suicide and euthanasia, is given some prominence; but so too are arguments around diagnosis, conﬁdentiality, genetics, feeding, advance directions, truth telling, wandering, and so on. A very distinct and much-needed contribution, however, has been Post’s concerns about hypercognitive society. There has been a tendency to think of people with dementia in a hypercognitive manner reﬂecting the scientiﬁc preoccupation with cognitive function. In turn, this opens up the threat to personhood in people with dementia who are seen as less than other persons without dementia. Post exposed the degree to which hypercognitivism has inﬁltrated thought and added to the stigma of dementia. People with dementia, seen through a hypercognitive lens, are simply disvalued. The antidote to this form of infected thinking is to have a broader view of personhood.
Such a view emerged in the late 1980s and early 1990s in the work of Tom Kitwood (1937–1998), who established the Bradford Dementia Group and invented the observational tool of Dementia Care Mapping in order to encourage good quality care in the hope that this would lead to better quality of life for people with dementia (Kitwood 1997). Kitwood spoke of a “malignant social psychology,” which frequently exists in such a way as to worsen the effects of the person’s brain pathology. Subsequently, Steven Sabat has used the term “malignant positioning” to describe how those around the person with dementia might position him or her as in some regard useless, or incompetent, or of less value, or as less worthy of respect (Sabat 2001). On the contrary, Sabat’s conversations with people with dementia demonstrated their retained capacities and ability to make or construct meaning. What Kitwood ﬁrmly established was the possibility that those who inhabit the psychosocial environment of people with dementia can either enhance or detract from their standing precisely as persons.
The paradigm by which we approach people with dementia will obviously affect how we wish to characterize their personhood. A narrow focus on cognitive function favors the Locke-Parﬁt view, whereas a broader view of persons as situated embodied agents, which allows room for the inﬂuence of culture, society, and spiritual beliefs, for instance, is more in keeping with the views of Post and Sabat (Hughes 2011a). The question is which of these views is more in keeping with our actual experience of meeting real people in the world as human beings with or without dementia?
The tendency to regard people as cognitive or hypercognitive persons is relevant to two further discourses. First, there have been debates about the then-self and the now-self. If the former person, prior to dementia, is different from the present person, who has dementia, to which person should attention be paid? Ronald Dworkin (1931–2013) tackled problems of this nature in connection with advance planning by talk of experiential and critical interests (Dworkin 1993). Critical interests are those which shape people’s lives as a whole. These are the interests that give lives meaning. They link to a person’s sense of dignity in that, if human lives are devoid of meaning, they also lack dignity: they are not the lives people would have wished to live. Alternatively, experiential interests are the interests people have in what is happening, their experiences, right now. Dworkin argued that critical interests should be given priority over experiential interests and, therefore, that “precedent autonomy” should overrule any currently indicated autonomous wishes. Others objected and insisted that the person’s interests in what was happening now, their experiential interests, should be honored because people with dementia, even into the severer stages, can still demonstrate what they value and what is of value to them. The point to note is that the dichotomy between the then-self with critical interests and the now-self with experiential interests, once established, sets up the ethical dilemma of choosing between the two. But the dichotomy stems from the ﬁrst step, which allowed that there might be different selves or persons.
The second persisting conversation, which results from the tendency to view persons from a hypercognitive framework, is to do with the legal notion of decision-making capacity or competence. These words are used interchangeably and reﬂect different jurisdictions. In the Introduction it was suggested that the narrow legal focus on capacity or competence requires some form of augmentation. It is easy to see why competence might be regarded as central to ethical debates in dementia. The loss of competence affects the person’s autonomy. Autonomy is sometimes regarded as the central principle of liberal democracy and Western biomedical ethics. The threat to autonomy posed by dementia, therefore, is crucial. Having or not having the mental ability to decide for yourself becomes, as a consequence, of central importance in discussions about bioethics in connection with dementia.
As an example, when issues arise around the expression of sexuality or intimacy in care homes for people with dementia, the question of competence quickly arises. If one of the partners is said to lack the competence to consent to the sexual activity, then the behavior of the partner looks like sexual assault and might even, very reasonably, be regarded in legal terms as rape. From a different perspective, however, where human interaction and intimacy are not purely regarded in terms of cognitive competencies, even if in legalistic terms competent decision-making is absent, it might yet be that a degree of intimacy is not only permissible, but also ethical as a means to enhance a person’s quality of life.
Of course, in societies where the notion of autonomy is not given such preeminence, the individual’s standing as a person will not be so affected by apparent loss of autonomy. In any case, it is not apparent that anyone (at any age) can be said to be autonomous pure and simple without a good deal of dependence on others for a variety of things. Thus, we ﬁnd Agich (2003) setting out the ways in which autonomy must be thought of as the opposite side of the same coin as dependence: we achieve autonomy through our dependence. In this more situated or embedded view of the person, it makes more sense to speak of someone’s personhood being maintained by the actions and attitudes of those around, especially by close friends and family (Hughes 2011a).
Definitions In Dementia
So far the term “dementia” has been used as if it were unproblematic. It is controversial. A number of experts in the ﬁeld have suggested that it should be jettisoned. First, it is imprecise; secondly, it is stigmatizing. “Dementia” is, after all, an umbrella term. It deﬁnes a syndrome characterized by global cognitive impairment, with variable changes in personality, affect, and behavior and a variety of physical manifestations. It is an acquired syndrome; in other words it is not present at birth. It is normally progressive and incurable. There is a huge number of speciﬁc diseases that cause dementia, perhaps over one hundred, but the four most common conditions are Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, and front temporal degeneration. This is not the place to set out the details of these conditions (Hughes 2011b). The point is, however, that saying someone has dementia does not really tell anyone much about them. It could be that the person will present with profound memory problems (as in Alzheimer’s disease), or she might present with visual hallucinations (dementia with Lewy bodies), or he may simply appear to have a subtle change in his personality (as in front temporal degeneration). So the term “dementia” is imprecise.
Some might argue that this is not, in fact, a practical difﬁculty and that the brand name “dementia” is useful because it has attracted global recognition. At least if it is said someone has dementia, then it is immediately known what sort of condition is being spoken of. Still, in the general population (even in high-income countries), it cannot be said that everyone is clear about what dementia means. But even if it were a precise term, it is still stigmatizing. No one would wish to be labeled as out of mind, which is what the Latin etymology suggests. To be called “demented” is to be insulted. It is not possible to avoid the charge that the word “dementia” is stigmatizing. So, too, is the condition. But the language linked to the condition adds to and suggests the stigma. It does nothing to convey the nature of the condition in a precise clinical fashion. The problems around “dementia,” as a conceptually confused term, have led to calls that it should be replaced (Hughes 2011a). Indeed, in the ﬁfth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the “dementias” have been replaced by “major neurocognitive disorders.” This has the merit of being descriptive. For instance, the term “neurocognitive” stresses that these are neurological conditions not just cognitive disorders. Still, there are elements of the nomenclature which might still be stigmatizing: the assertion, for instance, that someone has a “major” disorder and a neurocognitive one at that! But there is a new concern around deﬁnition which has arisen in connection with DSM-5.
In addition to major neurocognitive disorder, DSM-5 also deﬁnes a lesser disorder called “mild neurocognitive disorder.” The terminology is noteworthy. The opposite of “major” is normally “minor,” and the initial drafts of DSM-5 used these terms. Only later did the terminology change from “minor” to “mild.” Why? Well, one reason might be that there previously existed the term “mild cognitive impairment,” known as MCI, and it may be the framers of DSM-5 wished to keep the connection between MCI and the new nomenclature. Given the amount of research associated with MCI, this was understandable. But it is not without ethical importance.
MCI is deﬁned as a pre-dementia state. The orthodox view is that if it were possible to pin down the pre-dementia state and ﬁnd a treatment for it, which is redolent of the push for earlier diagnosis, then dementia could be beaten or cured. Of course, this in itself seems unlikely given that “dementia” is not one thing but many. Nevertheless, the proponents of MCI have combated this by deﬁning MCI ever more closely to increase the chances that speciﬁcally, e.g., the amnestic form of MCI will convert to Alzheimer’s disease. Even so, not every case of MCI will necessarily convert to dementia; and yet people have been told that they have MCI as if it were a certain diagnosis, ignoring the uncertain prognosis and ignoring the possibility that the person will never have any form of dementia. This then is an ethical issue: should MCI be used as if it were a diagnosis and, if so, how? But it intersects with a variety of sociological questions to do with the relationship between clinicians, scientists, the pharmaceutical industry, and potential patients. The drivers behind the emergence of MCI seem not to be solely clinical, however laudable these might be, and hence the wish to retain the terminology of “mild” in connection with neurocognitive disorder is not value neutral.
In turn, this reﬂects the underlying biological debate about dementia and normal aging. It seems important – for instance, to encourage diagnosis – to state that dementia is not part of normal aging. So it is wrong, from this perspective, for older people presenting to their family doctor to be told that their concerns about forgetfulness can be dismissed because “It’s just age!”. Most older people do not develop dementia, even though the prevalence increases with age; so it is not normal to have dementia. But at a biological level, there is no cutoff between what is normal and what is not, albeit for practical purposes criteria have been developed for this purpose. But, at the margins, what counts are evaluative decisions (Hughes 2011a). Inasmuch as MCI and now mild neurocognitive disorder extend these boundaries, they involve value judgments. Such diagnoses threaten (and at least have the potential) to medicalize normal aging by calling it a “disorder.” It might be agreed that dementia is not normal aging, but a degree of forgetfulness might well be regarded as normal in the context of aging. So issues of diagnosis and deﬁnition dig deep.
And at a global level, the question arises, should the evaluative judgments that have driven the formation of nomenclature in a prosperous, high-income country be used to shape the demand and provision of healthcare in low to middle-income countries? To put this question more starkly: if in a village in a poor country the older person with dementia has been looked after by the community as if his or her changes in behavior were just a matter of getting old, where old people are nonetheless supported and accorded a degree of respect consequent upon their age, what is to be gained by insisting that a diagnosis of dementia should be made? If in that village the priorities are that there should be clean water, protection from malaria, and education about HIV/AIDS, should the lack of a diagnosis of dementia be regarded as “gross neglect” (ADI 2011)?
Behavioral And Psychological Symptoms Of Dementia
It is not only in connection with diagnosis that deﬁnition is important. The noncognitive symptoms and signs of dementia (e.g., agitation, vocalization, hallucinations, depression, and the like) are now often lumped together and described as the behavioral and psychological symptoms of dementia (BPSD). This has encouraged greater critical and scientiﬁc thought about these features of dementia. For both scientiﬁc and humanistic reasons, it is increasingly stressed that BPSD must be thought about in detail. It is simply not going to be the case that someone with severe dementia who repeatedly shouts is going to be treated appropriately if treated in the same way as the person who is hallucinating. Of course, the person who shouts out might be hallucinating, but he or she might equally be in pain. What is required for ethical care is an individualized and personal approach to understand the behavior in this particular person at this time. For one thing, these behaviors can make the person vulnerable and in so doing raise ethical questions about how societies protect their vulnerable citizens.
BPSD has also sometimes been called “challenging behavior.” This gives the impression that the person with dementia is deliberately being challenging, as if the behavior is his or her fault. A more acceptable description, therefore, is to refer to this as “behavior that challenges” to show that it is the people around who are challenged. The mantra that behavior that challenges is always a reﬂection of unmet need should be globally proclaimed as an ethical imperative. If the person’s needs can be understood, then the behavior might be amenable to treatment, where this is likely to be psychosocial but might be pharmacological. In keeping with this way of thinking, in some parts of the world (but not in others), attempts have been made to decrease the blanket use of sedating or antipsychotic drugs for BPSD. An antipsychotic might be useful for hallucinations (although they can be dangerous in any form of dementia but particularly in dementia with Lewy bodies) but is not the right treatment for “wandering.”
“Wandering” is, in fact, a good example of the new approach to the management of the symptoms and signs lumped together as BPSD. Above, when ﬁrst used and in the last two sentences, “wandering” has been used with scare quotes to denote a potential problem. It is now well established and accepted that wandering is not one phenomenon but many. A person described as “wandering” may simply be keen to have more exercise. Another person may be trying to ﬁnd something or trying to ﬁnd a remembered place, such as a former home. Someone else, whose “wandering” takes the form of always seeking a familiar carer, may just be seeking reassurance. Attention to the context and history will help to determine the unmet need. In this way, Kitwood’s (1997) person-centered care is put into effect by attention to the psychosocial environment as well as to the biological features of the dementia. That care should be person-centered would seem to be an ethical imperative, but of course this requires that the characterization of “person” is broad enough to encourage the full view of what might constitute potential ways to help the individual.
Finally, while still thinking of deﬁnitions, it is worth lingering over the notion of competence, which was discussed above in its legal context. The alternative to “competence” is “capacity” and (somewhat glibly) it was stated above that the two words can be used interchangeably. This is largely true; they are used alternatively in different jurisdictions. A closer interest, however, in their etymology links “capacity” more ﬁrmly to the cognitive act of deciding, whereas “competence” links more obviously to the evaluative and volitional components of decision-making. In connection with dementia, a broader view is often required. Certainly a man may lack the cognitive capacity to decide why he should be allowed home from hospital, but he may still have the competence to evaluate at an emotional level his desire to get home, and he might have the volitional competence to try hard to survive at home. Respect for him as a person (i.e., person-centered care) suggests that he should be seen in a surround that is not circumscribed by the law, but is broader. In this context, rather than saying “he cannot do it” (namely, make a decision), people who wish to show respect might be more inclined to ask “What can be done to support him in his attempts to live well the life that he would choose?” Of course, if in a particular society autonomy is not such an important issue, then these points may not seem to apply. Yet how the individual’s standing as a person is honored will remain an issue; and if it is not by supporting persons to make decisions for themselves, it might still be by involving them in decision-making processes, perhaps as an elder of the society.
Specific Ethical Issues
In an important piece of research, Strech et al. (2013) have carried out a qualitative systematic review to set out the full spectrum of ethical issues that arise in clinical dementia care. It is not sensible to try to consider each ethical issue here. But three broad areas can be considered chronologically.
From what has already been said, it should be apparent that giving the diagnosis of a dementia itself raises ethical concerns. Whitehouse and George (2008), for instance, suggest that phrases such as “Alzheimer’s disease” should be abandoned altogether and instead talk should be of brain aging. But there are also issues about when to make the diagnosis. The push for early diagnosis, apparent in developed countries, has been contested, and there is increasing acceptance of the idea that what is required is a “timely” diagnosis, where the correct timing is established by the person with dementia and his or her family carers. This will usually be where difﬁculties are starting to emerge and help is required (Nufﬁeld Council on Bioethics 2009). Some people may never wish to learn the diagnosis, although the literature suggests that most do, but nevertheless it may become imperative for a diagnosis to be made if those around the person trying to cope with increasing difﬁculties are to be helped in a timely fashion. This highlights developing thoughts about the notion of autonomy, which is increasingly seen in relational terms. None is fully autonomous and dependence increases in dementia. Indeed, autonomy and dependence may be seen as different sides of the same coin (Agich 2003). So ethical issues in dementia often involve consideration of how to weigh up the interests of one person (with dementia) against another (the family or close carer). These sorts of consideration will vary between different communities, depending on the extent to which they do or do not see the person with dementia as an autonomous individual where respect for autonomy is given great weight. In some cultures, for instance, it may seem more acceptable not to involve the person concerned in the diagnosis. Whenever the diagnosis is made, however, when it is given to the person with dementia or to his or her carers, it needs to be conveyed in an appropriate manner.
Again, there will be cultural inﬂuences at work, but recognition of the importance and place of empathy would seem to be widespread.
As the condition progresses more care will be required. This in itself can raise ethical tensions if, for instance, the person does not recognize either that there is a problem or the extent of it. Again, how this might be handled will vary between communities, but the issue of taking over tasks can be emotive. In some communities, often in low nd middle-income countries, where there is greater veneration of older people, pragmatic solutions can be found. The elder person might still be consulted about important decisions – when to sow seed – but (in the face of cognitive impairment) others might make the actual decision. In higher-income countries, similar dilemmas are now being discussed in terms of “therapeutic” lying. It may seem appropriate, if it would decrease distress, that the person should not be told that she is going to the day center, but told that she is going for a ride in the car. It may seem appropriate not to tell the man that his wife has died if this information continually upsets him. Another person may require medication to be given covertly if this is found to be helpful. Some relatives are inclined to hide the car keys if the person’s driving has become erratic or dangerous. But all of these (and similar) scenarios are contentious. Whereas they may seem justiﬁable on utilitarian grounds, a deontologist or virtue ethicist may well ﬁnd the thought of lying to people with dementia, or deceiving them in any way, as repugnant.
People with dementia will not always be able to consent, often because they will lack the capacity or competence to do so. Decisions are made in different ways in different countries for people who lack decision-making powers. Substituted judgments are where the decisions that are made attempt to match the decision that the person him or herself would have made if able to do so. Proxy decisions are where someone else, usually a close family member, but potentially a lawyer or other ofﬁcial, makes the decision for the person. Decisions are often made in the person’s best interests, but again this notion can be understood differently in different countries and is sometimes speciﬁed in law in particular ways.
The aim of providing care is to enable the person with dementia to live as well and as independently as possible. One possible way to achieve this is to use various forms of assistive technology. These can vary, from appliances to make it easier to use a toilet to gadgets that turn the gas off if it is left on in the kitchen. Electronic tracking and tagging mechanisms have probably been the most discussed in the ethics literature; and, more recently, there has been increasing interest in the use of various types of robot. There will frequently be grounds to argue that assistive technology is a good thing inasmuch as it is able to improve the lives of people with dementia: it allows them to go out and walk with more security; it allows them to live independently; it allows them to stay in touch with other people; it increases their safety. Against these beneﬁts there are various alternative ethical concerns. Assistive technology may represent an infringement of the person’s liberty. It may also decrease the apparent necessity for real human contact if everything can be monitored and controlled from a distance. The answer must be that assistive technology should be assessed with respect to an individual person: what are the potential beneﬁts and harms for this person now under these particular circumstances (Nufﬁeld Council on Bioethics 2009)? There is a further point of global signiﬁcance, however, because this sort of technology will not be available in poorer countries. Still, it has the potential to improve conditions for some people even in poorer countries if the beneﬁts of improved technology could be appropriately harnessed. Moreover, there remains the possibility that local innovation might ﬁnd ways to use community resources to engage people with dementia in ways that are meaningful and socially sustainable.
End Of Life
Over the last 20 years, there has been increasing interest in palliative care for people with dementia. Studies have shown that there are signiﬁcant differences between countries concerning what constitutes appropriate end-of-life care for people with advanced dementia. Some countries are more hesitant about withdrawing and withholding treatments, including cardiopulmonary resuscitation, than others. The judgments required are often nuanced. Antibiotics for fevers, for instance, can be used with curative intent but can also be used palliative, or they can be withheld. Depending on the severity and nature of the person’s infection, it may be that an antibiotic will make no difference at all and might make matters worse (e.g., by inducing diarrhea). There again, pneumonia, which has been called “the old man’s friend,” is not a benign condition and can be associated with a good deal of distress, so antibiotics might be of value even if they do not alter the outcome. On the whole, the aggressive treatment of terminal conditions in dementia, sometimes seen in more developed countries, is not regarded as appropriate from the perspective of palliative care. A focus on basic issues around care would seem to be better. For instance, instead of feeding tubes of various sorts when the person is having problems with swallowing, one-to-one contact between the person and a career during careful oral feeding can be regarded as more humane, even if there remains a risk of aspiration of food into the lungs. Double effect and ordinary and extraordinary means are ethical doctrines that seem apt in the context of end-of-life clinical care in dementia.
Many of the speciﬁc ethical issues in dementia are well covered in the report by the Nufﬁeld Council on Bioethics (2009). The report also sets out an ethical framework. This consisted of six components. The ﬁrst commended the approach of casuistry. The second emphasized that dementia was a harmful brain disease, but the third, nonetheless, suggested that it was possible to live well with dementia. The fourth component stated that the interests, both of people with dementia and of those who care for them, should be promoted in terms of relational autonomy and of well-being.
The ﬁfth component was solidarity. It noted that everyone is dependent on one another but also encouraged the idea that people with dementia should be regarded as citizens. This means that everyone has responsibilities to support people with dementia, within families, communities, and within society as a whole. But it suggests that the responsibilities are global too. The ﬁnal component concerns, again, the notion of personhood: individuals with dementia remain persons of equal value, and they should be treated in ways that preserve their dignity and humanity. If personhood is regarded broadly, such that persons are characterized as situated embodied agents, then it becomes imperative to treat them broadly too as biopsychosocial and spiritual beings embedded in a personal and cultural history, which incorporates the past and the present (Hughes 2011a). The ethical challenges here are global because there exists the real risk, with the increasing prevalence of dementia affecting low-and middle-income countries especially, that this vulnerable group of citizens will be neglected and that lower standards of care, which undermine personhood, will be tolerated.
Dementia is not one thing. It is a feature of aging even if it is not normal. Its complex status as a concept raises concerns about the medicalization of normal aging. It raises a raft of ethical concerns, which mirror concerns around many chronic and degenerative diseases. It also raises ethical dilemmas that are particular. These reﬂect issues to do with competence but also deeper issues to do with the nature of personhood. Worldwide, the aging of the population makes dementia a global issue and one which will continue to require commitment, compassion, and solidarity.
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