Matters of the Heart and Mind: Negotiating and Assessing Personhood and Dignity Among Elderly Canadians with Dementia

by Steven Sabat

The maintenance of dignity and personhood in people who have experienced cognitive decline due to dementia is a process which is, by its nature, social and interactive. In other words, one cannot maintain one's dignity and personhood to the fullest extent possible without the cooperation and support of others. The cooperation and support given by others can be enhanced or limited by the ways in which others view the person who is afflicted. It would seem that in order to provide the optimum level of cooperation, healthy others must be willing and able to assess those aspects of cognitive ability which have declined as well as those aspects which have remained relatively intact. In order to accomplish both of these tasks, healthy others must have at their command the tools and methods of assessment which can detect functional as well as dysfunctional abilities and behavior.

It is my purpose in this paper to explore some of these issues in terms of where we stand now and avenues we might pursue in order that we may improve the quality of life experienced by, and the care of, people with dementia. Thus, I should like to begin by discussing briefly (1) the limitations of what I will call traditional methods of clinical assessment, (2) how the aforementioned limitations can be compensated for through the use of more recent approaches to assessing cognitive function, and (3) how the fruits of such recent approaches can be employed to enhance the dignity and personhood of people with dementia.Traditional methods of clinical assessment, going back to the 19th Century, have been dominated by an approach borrowed from medicine combined with the use of psychometric measures. For example, a perspective borrowed from medicine is that in which a disease is understood primarily in terms of the pattern of defects which follows in its wake. Far less emphasized is the person's reaction to the effects of the disease and to the behavior of others. In a hospital clinic, the patient is given a battery of standardized neuropsychological tests (psychometric measures) in order to assess his or her level of cognitive function. In such tests, cognitive functions such as language, memory, calculation, orientation, and the like are measured by objective questions, all of which are removed from the everyday social context in which those same functions are most often called into play. In addition, each of the cognitive functions is measured by a specific test, so that such functions are tested one at a time, in isolation. Failure to achieve normal levels of functioning on such tests is assumed to portray the patient's cognitive ability, despite the fact that (1) in the everyday social world, cognitive functions are called into play simultaneously rather than in isolation from one another, and (2) the social context of the testing situation is remarkably different from that of the everyday social world.If healthy others assume that the cognitive functioning of persons with dementia is accurately portrayed by results of such tests, and if the behavior of healthy others toward the person with dementia is guided by such assumptions, a grievous error may be in the making. There is still another source of error in making such an assumption and that is that the realm of cognitive function is being tapped completely, or nearly completely, or enough to make a judgment, by standard tests when, in fact, that is not the case at all. Which aspects of cognitive ability are not tapped by such tests, and how would those same abilities be critical in improving the care and maintaining dignity of the person with dementia?The more recent use of Social Construction Theory (SCT) as an approach to understanding aspects of selfhood can be seen to tap into aspects of cognitive function which are not assessed through the use of neuropsychological tests. According to SCT, there are three aspects of Selfhood, called Self 1, Self 2, and Self 3. Self 1 is the self of personal identity--the continuous experience of being one and the same person, and this aspect is expressed through the use of personal pronouns such as I, Me, My, Mine, Myself. Through the use of these pronouns, the individual is locating as his or her own, a variety of experiences and beliefs. In principle, one might not recall one's name, date of birth, and the like, but still have an intact Self 1 as seen in the use of personal pronouns. Self 2 is comprised of one's physical and mental attributes, the latter including one's mental abilities as well as one's beliefs and beliefs about one's attributes. One may have, at the present time, dysfunctional attributes such as not being able to dress oneself and one may believe that he or she is burdensome to others as a result, but in both cases, the person has an intact Self 2, for example. Self 3 is quite different from the other aspects of the self, for Self 3 is the plethora of social personae which we construct with the cooperation of others. So, one particular person may be a dedicated teacher, a devoted parent, a serious researcher, a deferential child, a loving spouse, and all of these personae may be displayed in very different patterns of behavior. However, in order to bring any of these personae into being, one must enjoy the cooperation of others: one may not manifest the persona of teacher if one's students do not recognize him or her as teacher, one may not manifest the persona of loving spouse if one's spouse does not cooperate. Thus, the ability to manifest a variety of Self 3 personae is extremely vulnerable in that one needs, by definition, the cooperation of others.

I employed quotation marks around the noun, patient in earlier paragraphs for a specific reason: If one assumes that the cognitive ability of a person with dementia is understood on the basis of standard tests, and if one sees that person as being defective as a result, and if one views the person with dementia principally as a patient as a result of the diagnosis, one will not give that person the cooperation he or she requires in order to construct healthy, valued, worthy, social personae. Indeed, the only social persona which will be able to be manifested by the person with dementia is the only persona which will receive the cooperation of healthy others in constructing- that of the demented patient -and that is the very persona which the person with dementia finds embarrassing and unworthy and which emphasizes nothing but his or her defects. In this manner, the dignity and care and indeed, the personhood, of the individual with dementia can come under unremitting assault.The overarching point here is that although aspects of selfhood are not tapped at all by traditional methods of cognitive assessment, those same aspects of selfhood can be illuminated through the use of SCT and the discourse of the afflicted person. Studying that discourse, the conversation and behavior of the person with dementia, can reveal yet other aspects of intact cognitive function such as the existence of pride, the need to maintain feelings of self-worth, the need to avoid embarrassment and humiliation, the ability to be concerned about others, the ability to enjoy and express humor, to name a few. However, when we study language via the use of standard tests, we avoid studying conversation in that there are no truly standard conversations which can be employed and scored through the use of numbers. It is entirely possible, for example, that an afflicted person's speech may be syntactically poor but that the illocutionary force and perlocutionary force of what is being said are intact. The illocutionary force of a speech act is understood as what is achieved in saying something--such as a promise, an apology, a command; the perlocutionary force is what is achieved by saying something. For example, congratulating someone would be the illocutionary force of a comment, while pleasing the recipient would be the perlocutionary force. If we were to limit our understanding of the afflicted person's linguistic ability to what we learn from his or her performance on a standard language battery, we would miss these aspects of language function completely. Thus, in order to tap into such aspects of language function, one must have natural conversations with the afflicted person--and thereby treat that person as a person in the first place.All this is not to say that the person with dementia is devoid of cognitive difficulties, but rather that the process of maintaining personhood and dignity requires the cooperation of others who, in addition to noting the cognitive problems that exist, are able to identify and pay sustained attention to those cognitive abilities which remain intact, including aspects of the personhood of the individual with dementia.