Abstract
The aim of this article is to explore some of the ethical issues surrounding the assessment and determination of capacity of people with dementia in light of their meaning-making ability as shown through discourse. Discourse analysis, two illustrative cases, social construction theory and positioning are used to highlight some of the ethical dilemmas involved in basing a determination of capacity on the diagnosis of dementia and neuropsychological tests of cognitive function. Although neuropsychological tests have their place in assessing some aspects of cognitive function, aspects cognition such as meaning-making ability and selfhood cannot be assessed in a standard format. In dementia, there can be a differential impairment of recall memory while the personality, values and substantial long-term memory remain intact, as does implicit memory for recent events. People with dementia are vulnerable to being negatively positioned, thereby unfairly undermining their rights to make decisions about aspects of their lives. Assessing the capacity of a person with dementia to engage in decision-making is presently in need of examination so as to take into account the person's meaning-making ability and selfhood. Incorrect negative positioning, based on the diagnosis and defects in recall memory, can obscure intact cognitive abilities that allow a person to make decisions about aspects of living, creating the possibility of lasting harm being inflicted on the person with dementia.
By mid-century, barring development of a cure or preventive measures, the prevalence of Alzheimer's disease (AD) is predicted to triple in the US alone, affecting more than 14 million people and the international prevalence is likely to reach tens of millions. Increasingly, determinations of capacity will be required in order to avoid harm to the person with dementia and to others. I shall discuss some of the moral and ethical issues that arise given that many people with AD in the moderate to severe stages of the disease are semiotic subjects [1] whose selfhood may be intact despite deficits in certain cognitive abilities as revealed by standard neuropsychological tests [2], [3]. Although people with AD may have problems with: (i) aspects of language, such as organizing syntactically correct sentences; (ii) organizing sequences of movement; (iii) performing rudimentary calculations; and (iv) recalling recent events from memory, many retain their selfhood and act on the basis of the meaning that situations hold for them. What might suspending their right to make decisions mean to such people and on what basis would that suspension be determined?
Semiotic people and meaning
What does it mean to be a semiotic subject – that is, a person whose behaviour is driven by meaning? For present purposes, we understand ‘meaning’ in three different ways:
The meaning of a situation includes all possible interpretations or inferences that a person can make in light of what Shweder and Sullivan [1] call a ‘conceptual scheme’. Specific situations are understood in light of some overarching interpretive way of thinking (conceptual scheme). For example, the way in which dogs are viewed is quite different in Hindu culture as opposed to North American culture. In the former, dogs are considered to be polluted animals that are cursed to mate in public, whereas in the latter, they are loved and provided for with great economic resources and care. Thus, the same physical situation may be understood to have entirely different meanings depending upon the conceptual schemes of the observers.
Semiotic subjects act intentionally given their interpretations of the circumstances in which they find themselves and they evaluate their own behaviour and the behaviour of others in accordance with socially agreed standards of propriety and reason. As semiotic subjects, people with AD can be affected by how they are treated by others and their behaviour toward others can, thereby, be affected. Thus, their actions are affected by more than solely the neuropathology affecting their brains, because they can be affected by psychosocial circumstances as well [2],[4–7]. One question that should be addressed in any hearing or evaluation regarding the suspension of a person's right is: What is the meaning, to the person with AD, of the decision to label him or her as being incapacitated or incompetent with regard to a particular aspect of decision-making? Might the decision to suspend a person's right to choose where he or she lives, for example, result in depression, frustration, anger and might these sorts of reactions exacerbate the effects of the neuropathology already in existence, rendering the person even more debilitated? That is, would the result be ‘excess disability’ [8] and, thus, harmful to the person? The literature documents the existence and effects of excess disability [2], [9], [10] in which the person with AD is said by family caregivers to be incapable of doing particular tasks at home, yet is capable of doing those same tasks at a day centre.
If a person with AD can perform tasks consistently and adequately in one social setting but not in another: (i) the person cannot be said to be incapacitated with regard to that particular task; and (ii) the inability to perform the task in one setting cannot be assumed to be solely the effect of neuropathology, or reflective of random variability produced by the disease. This issue is of particular relevance in assessing capacity, for the primary caregiver is often an important source of information in legal determinations, along with information provided from the clinical assessments conducted by psychiatrists, geriatricians and neuropsychologists in what can be the threatening (to the person with AD) social setting of the hospital clinic or physician's office. Recently, Tor and Sales [11] pointed out that guardians are often appointed on the sole basis of the diagnosis provided by a family physician and that judges have relied on those opinions rather than on behavioural evidence even when legal statutes require specific evidence of incapacity. Although a diagnosis of probableADcannot be made without a battery of physical and neuropsychological evaluations, the effect of being elderly and diagnosed with dementia or probable AD can result in the person being positioned in advance as being incapacitated.
Discourse, meaning-driven behaviour and decision-making
Although no standard neuropsychological tests can determine that a person's behaviour is driven by meaning, the person's discourse, what he or she says and does in social situations, can reveal meaning-driven behaviour and the evaluative capacities that such behaviour requires. It would seem logical that the process of determining incapacity or incompetence would have to include observing the person inmore than one social setting as well as interviewing the person in a non-threatening, supportive way to understand the place of the issue in the larger context of the person's life. Such an interview would require the interviewer to: (i) gain the trust of that person; and (ii) facilitate conversation if the person with AD has wordfinding or syntactical problems. That is, an assessment of the ability to act meaningfully cannot occur in a relatively impersonal encounter in the clinic, although it is possible to infer, from the behaviour of the person in the clinic, that the ability to evaluate the meaning of the situation exists.
For example, when being tested, the person with AD may fail to answer correctly certain simple questions that would have posed no problem in previous decades. The personmay react with anger, might cry, possibly leave the room or insist on not continuing. Such reactions are often termed ‘catastrophic’ and the person may be described as being ‘emotionally labile’, both being symptomatic of the pathology of AD. Another way to interpret such behaviour would be to recognize that the person with AD has correctly judged that: (i) she was unable to answer a question thatwas quite simple; (ii) tremendously negative connotations are understood; and (iii) she wants to avoid further exposure to a humiliating situation. Reacting with anger or sadness to such a situation is quite appropriate and wanting to avoid experiences of this kind is a sign of self-respect.
A second important issue is that the legal focus is not on the particular decision that is made, but on the process of making the decision and the ability to carry it out. For example, a person does not want to live in an assisted living situation or with a particular relative. If the person with AD cannot manage particular aspects of living alone at home but does not now, and never did, want to live in a nursing home or assisted living situation or with a particular relative, what is a court to decide and on what basis? There are many elderly people who are not diagnosed with AD, but who cannot clean their homes or see well enough to read, pay the bills, nor can they bathe themselves or do their own food shopping, but who want to remain at home nonetheless. Clearly, they cannot ‘carry out’ many aspects of their decision, but do they, therefore, lose their right not only to make that decision but also to have it respected and supported? Friends, family and hired aides may carry out many of these tasks, but if they cannot and if a guardian is appointed, what powers does the guardian have? With plenary guardianship in the US, the guardian has all decision-making powers, the person in question has none, and the guardian can essentially force the person to leave his or her home. On what basis do we argue that a person in the aforementioned circumstances should lose the right to choose a place of residence? The person in the example we are imagining does not have a diagnosis of probable AD. What difference would it make (if at all) if the person in this example did have such a diagnosis?
Values
A third issue that is often part of an assessment procedure is whether or not the values involved with the decision are consistent with those held by the person during the decades of life before the diagnosis. There are, however, no standard tests that can show that the person's present values are consistent with those held in the past, nor can tests determine if the person's beliefs about the importance of living at home are incorrect. If the person is summarily moved against his or her will, and if the person understands the situation and agitates against it, the very act of disempowerment could result in harm in the form of, for example, depressive reactions that exacerbate the extant neuropathology or compromise the person's immune system. Some people with AD who score a 9 on themini-mental state (MMSE) [12], a score that indicates that the person is ‘severely’ afflicted, may still have [2]:
The capacity for experiencing shame and embarrassment; The capacity for experiencing pride and maintaining dignity; and The capacity for feeling concern for the wellbeing of self and others.
Being unable to use eating utensils, a stove or a laundry machine, to perform simple calculations, bathe, clean efficiently or recall the day of the week, the date and so on, may have little to no bearing on a person's ability to decide againstmoving and having to live with a particular relative, or on the ability to make other decisions that are consistent with long-held values and concerns.
Case example 1
A case described by Rosoff and Gottlieb [13] is instructive. The person with AD, Mrs F, made errors in serial seven subtractions from 100, could not name the hospital at which her evaluation was taking place, nor state the day of the week and date, nor could she recall the names of three objects 1 minute after having been presented with and repeating their names. These errors had little to no relationship to, or bearing upon, her ability to decide against having a colostomy – a decision which was consistent with her long-held desire to be ‘left in the same shape she started off in’ as well as with her long-term memories of an aunt who had herself undergone a colostomy. Mrs F ‘Stated categorically that she would prefer death to this potential deformity’. Owing to her daughters' prior concerns about Mrs F's ability to manage her finances, Plenary Guardianship (authority to make decisions and take actions on all matters affecting Mrs F) was granted to her long-time accountant who could have acted against her wishes and legally forced her to undergo the operation. In this situation, her diagnosis of probable AD and the related stigma, along with her inability to manage her finances, could have been used to force her, against her will, to have an operation. The problem of stigmatization based on her diagnosis was rather innocently revealed in the psychiatric evaluation.
Because Mrs F protested vigorously against undergoing a colostomy, her guardian asked a psychiatrist to evaluate her and to advise him about her ability to understand the nature and potential outcomes of her decision. The psychiatrist noted, ‘She stated perseveratively that she wanted help in proving to her daughters and her doctors that she “could decide for herself”.’ The use of the term, ‘perseveratively’ is itself an example of a conceptual scheme according to which her behaviour is interpreted as a symptom of illness. That is, the objective fact that she repeatedly expressed her desire to prove to her daughters that she was able to decide this healthrelated issue independently was presented in the psychiatrist's report as a symptom of pathology, as revealed by the use of the term, ‘perseveratively’. When there is already a diagnosis of probable AD on record, the tendency to pathologize the diagnosed person's subsequent (often normal) behaviour in a variety of situations can be exacerbated because the observer's expectations are affected by the diagnosis.
A different conceptual scheme such as Laing's existential phenomenology [14] yields a different interpretation because understanding the person's subjective experience of the situation is its goal. Mrs F had lost control over managing her finances, endured the weakening of some of her cognitive abilities, and was facing what, to her, was a personally abhorrent, and potentially terrifying, situation. Mrs F was extremely upset about the prospect of being forced to undergo an operation whose effects she did not want to endure. She deeply feared the possible loss of yet another form of control over her life, and this issuewas of far greater concern to her thanwas answering what were, from her point of view, irrelevant and meaningless questions about the date, month, year, her present location, calculation ability and the like. Most important to her was to convey her desire to prove her ability to make the decision about not having the operation. So, she said as much repeatedly.
Given her situation there would seem to be no reason, other than the stigmatizing fact of her diagnosis, to use the term, ‘perseveratively’, which connotes defective behaviour, as opposed to the word, ‘repeatedly’ which more accurately and objectively describes the behaviour in question. Her behaviour reflected what was important to her; she was evincing the rational, perhaps desperate, behaviour of a person who was logically experiencing great anxiety and feeling threatened by the spectre of being forced to undergo an operation that she categorically wanted to avoid, for she was a semiotic person.
The following case illustrates how a person with AD can easily be positioned as being oblivious to the meaning of a situation. Herein, the combination of a lack of understanding of memory functions and the influence of negative positioning based on stereotypes coalesce to create a situation in which the capacity of the person with AD to be harmed is doubted.
Case example 2
Post [15] provided an example of a defense attorney negatively positioning a woman, Ms H, who was diagnosed with probable AD and raped in a nursing home. The woman, a widow, had been married faithfully for many years and followed the dictates of Islam. In accordance with her religion, in the 10 years after the death of her husband, she neither dated nor had any sexually intimate relations. After being diagnosed with probable AD, she moved to a nursing home where she would walk about at night. One night, she walked into the bedroom of a younger resident who was described as being mildly retarded and who had a history of sexual aggression. A night nurse who checked on Ms H every 15 minutes discovered the two naked in his bed, and Ms H weeping. Some days later, Ms H told her daughter-in-law about the incident although fearful that mentioning it to her son would bring dishonour to the family. The son learned about the incident and sued the nursing home on the grounds of negligence.
The attorney defending the nursing home: (i) argued that though Ms H was upset about the incident, she soon forgot about it and, therefore, had not experienced any ‘lasting harm’, thus, making the case frivolous; and (ii) cast doubt about Ms H having any genuine religious commitments at her stage of dementia. Principally, on the basis of the diagnosis of probable AD and on what is understood from the results of standard neuropsychological tests and other definitions of the stage of the disease at which she was assessed, Ms H was positioned as incapable of: (i) any genuine religious commitments; (ii) any lastingmemory of the incident; and (iii) experiencing any enduring harm as a result of having been raped. Post commented that the defense attorney's arguments were essentially that someone deemed to be demented cannot experience harm to her self-identity or affect in any significantly lasting way. Let us explore these allegations in detail.
It was clear, however, from her discourse (what she said and did) that Ms H did occasionally engage in moments of prayer and that she behaved in a protective way toward some sacred objects that were in her room. One could, therefore, conclude that she had the capacity to pray and to act intentionally to make certain that nothing untoward would befall the religious objects in her possession. There is no universal definition of what constitutes evidence of a ‘genuine’ commitment to one's religion, nor of howMs H's behaviour fell short of such a definition. Thus, it was her diagnosis of probable AD and its stereotypic connotations that were being used to position her as incapable of any religious beliefs and practices.
The argument that Ms H could not experience any lasting harm from being raped is based on a striking lack of understanding of memory functions. Specifically, the argument is that without the ability to recall explicitly having been raped, Ms H could not have a memory of that experience and its meaning and could not, therefore, suffer any lasting harm. It is the case, however, that recall is only one of a number of ways of retrieving information frommemory and the existence of other forms of retrieval functions is of signal importance.
The burgeoning literature regarding implicit memory shows that people with severely defective ability to recall recent events and experiences still have the ability to be affected by those events and experiences over the longterm [16–20]. It is quite possible for people with AD to have new experiences, store them in long-term memory, and act on the basis of those experiences even though they may not be able to recall having them. Thus, people with AD, such as Ms H, can indeed be affected in a ‘lasting’ manner by experiences that they may not be able consciously to recall having had.
Aquilina and Hughes [21] describe a woman diagnosed with dementia with Lewy bodies. She had deteriorated to the point at which she was mute, ‘crawled on the floor to remove imaginary objects’, was incapacitated in most ways, and was not able to interact with her physician or her primary caregiver. After she began receiving an antidementia drug (one of the cholinesterase inhibitors), she spoke about matters that occurred during the time she had been mute and non-interactive. Thus, when according to all outward signs, the woman was oblivious and unresponsive, she was still able to acquire and store new information that she retrieved months later when given the antidementia drug. Thus, she had the ability to be ‘affected’ in a ‘lasting way’ by those events, showing again that the inability to show recall of events at a particular time does not mean that those events are not encoded and stored in long-term memory systems that can affect people for long periods of time.
The defense attorney's argument seemed based not on scientific facts, but rather on erroneous stereotypic thinking about peoplewithADalong with their defective recall abilities. The argument that a person with dementia cannot experience harm with regard to self-identity remains and, in the following section, I shall attempt to address this argument.
Selfhood and the person with Alzheimer's disease
Relatively, recent contributions in the area of social construction theory [1],[22–24] help us to understand what AD does and does not do to selfhood. According to this approach, there are three aspects to selfhood: Self 1, Self 2 and Self 3.
Self 1 is the self of personal identity. It is the experience of being a singularity and having one and the same point of view from time to time, as opposed to the pathological multiple personality disorder. The Self 1 is expressed through the use of indexical pronouns such as ‘I’, ‘me’, ‘myself’, ‘our’ (yours and mine), ‘us’, ‘we’ (you and I). The use of such pronouns indexes, or locates in psychosocial space, the source of promises, obligations, responsibilities and the ownership of experiences. A person can be globally amnesic and still retain an intact Self 1 simply by saying, ‘I feel sad …’.
Self 2 is the self of mental and physical attributes, past and present. One's height, eye colour, possession of high school, college, advanced degrees, one's health, are all part of the Self 2. Among the mental attributes that are part of Self 2 are one's sense of humour, one's facility with words, one's beliefs (religious, political) and one's beliefs about one's attributes. The diagnosis of probable AD is part of one's Self 2 just as is one's sadness or anger about the diagnosis, the related embarrassment, depression and frustration regarding the losses in certain cognitive abilities, and one's desire to maintain one's dignity based on one's positive Self 2 attributes. Neuropathology does not destroy Self 2 even in the moderate to severe stages of the disease [2], [3]. Problematic to the person with AD, however, is that others often focus increasingly on defective Self 2 attributes and less on positive attributes. The person is, thereby, affected negatively – as would be any person if viewed principally in terms of negative attributes about which the person is embarrassed or ashamed – indicating again that the person with AD is a semiotic subject.
Self 3 is the multiplicity of social identities that the person constructs with the necessary cooperation of others. One can be a loving spouse, a loyal friend, a loving, supportive parent, a respected professional. Each entails a unique pattern of behaviour; behaviour entailed in being a loving spouse is different from that associated with being a respected professional. One cannot construct a particular social identity without the cooperation of at least one other person; one cannot construct the identity of a loving spouse if one's husband or wife does not recognize one as being his or her spouse. Too often, the social identity of the person with AD becomes increasingly restricted to the ‘dysfunctional patient’ (an identity that is anathema to the person with AD) because others do not cooperate in the construction of other, more valued, social identities. The vulnerability of the social identity of the person with AD does not inhere solely in the neuropathology of the disease, but in the social interactions the person has with others. If others refuse to cooperate with the person with AD in the construction of a valued social identity, the person is restricted to the identity of ‘dysfunctional patient’ and so any ‘loss of social self’ has its roots in the social world, rather than in the brain, of the person in question [25–27].
Contrary to the defense attorney's argument in the case described earlier, the self-identity of Ms H, including Self 2 attributes of her religious beliefs and values and howher having been raped constituted an assault on those life-long beliefs and values, most certainly could have been harmed. The capacity to experience lasting harm to their self-identity can indeed remain intact in people with AD, and is, therefore, of great importance in discussions of whether or not the law protects their right not to be harmed and of the potential effects of curtailing their rights to make decisions regarding aspects of living their lives.
Conclusion
It cannot be assumed tacitly, even in the moderate to severe stages of probable AD, that a person lacks meaningmaking ability; for doing so may well be incorrect and result in the infliction of further harm. We must, therefore, be extremely careful about: (i) how we determine that a person with AD lacks one or another capacity; and (ii) if a clear lack of capacity is indicated, how we approach the person in question. There may be some activities, such as driving, that the person with AD can be shown to lack the capacity for carrying out safely, so that it may, indeed, be in the best interests of the person with AD as well others that the person with AD not be permitted to drive. It should not be assumed, however, that curtailing permission to drive does not have an effect on the person with AD. Thus, the person should be approached and treated as one who has incurred a loss of significant meaning. Whereas driving may lend itself to valid methods of assessment, other capacities may not lend themselves to the same level of ecologically valid, objective evaluation and it is extremely important that such capacities be defined and examined clearly, perhaps through discourse analysis, given the semiotic nature of many people with AD.