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BOOK REVIEW |
Health and Medicine Policy Research Group Chicago, IL 60602
Self, Senility, and Alzheimer's Disease in Modern America, by Jesse Ballenger. The Johns Hopkins University Press, Baltimore, MD, 2006, 236 pp., $43.00 (cloth)
I write this review under a darkening cloud. My friend Essie (not her real name) was recently diagnosed with Alzheimer's disease (AD), the first friend in my generation. As I waited for the results of the comprehensive assessment she underwent, I felt burdened by an almost unbearable weight that was not entirely selfless. Haunted by images of how her life would change, what would be lost to her as time passed, I saw her a year from now, five years from now, imagining what it might feel like as ways of being, doing, and living gradually slipped away. And I saw myself in a similar position or, at least I tried to, until I came to feel quite overwhelmed with fear and anguish.
I am happy to report that Essie took the diagnosis with an equanimity that has left me in awe. Yet, perhaps I should not have been surprised given her positive approach to just about everything she encounters. For now, except for some confusion with locating what should be familiar places and occasional word-finding difficulties, she is doing very well. Following the diagnosis she called long-time friends to let them know, cancelled a planned trip, met with her attorney, told me that she would no longer be borrowing my car, and described to me, as her secondary proxy, exactly how she wanted to be cared for, especially when her condition deteriorated significantly. With her permission, I am documenting our conversations. For now, however, she feels appropriate indignation—to be followed up by action—when her doctor talks to her sister before talking to her. Like in a fencing duel, which admittedly I've never experienced, I'd like to be her "second" as she fights to retain her own voice as well-meaning family members and friends try to protect her from herself. A time may come when that is necessary. It is not now.
AD and the Self
My response to Essie's diagnosis is visceral proof of Jesse Ballenger's central arguments in Self, Senility, and Alzheimer's Disease in Modern America. As Ballenger makes so clear in his fine contextual account of how our contemporary understandings of and responses to Alzheimer's disease have evolved, these are inescapably linked to our notions of what it means to be a "self" and how we think about the meanings of aging and old age. Our modern sense of self, so tied to cognition, autonomy, and narrative unity is overwhelmed by a disease that seemingly destroys these elemental qualities of personhood. I suspect it also says something about class and social location. The sense of loss is further exacerbated by the ways in which the actions of others can so easily divest a person of her or his adult status.
Despite a deepening scholarly interest in redefining personhood (see Leibing & Cohen, 2006, Post, 1995, Sabat & Harre, 1992) as the "reflexive, immaterial, communicable essence of a person that is located deep within the body, but that is sometime veiled by symptoms" (Leibing, 2006, 243), dominant views still fuel the frightening notion that I—should I become a person with dementia—may be unable to exercise any control on how I live. I will be lost in a moral space that I once was able to define by an understanding of the good. In Ballenger's view, the inability to offer a narrative account of the self, encompassing horizons of meaning and bridging times, places, and people is the central and dreadful loss associated with dementia. By the nineteenth century, ideas about self-control and health as ends in themselves, (not radically different than today's "successful aging" model) gave strong impetus to drawing a fine line between the senile or the pathological and the normal. Good is what is young—whether it is the immune system or unlined skin. People with dementia are emphatically not young.
Ballenger, correctly, I believe, notes that the liberal attack on ageism "cannot shake the accusation that it simply demands old people to be young." As the result of this demand, people with AD are unintentionally victimized by our collective inability to acknowledge and respond to difference, in this case particular losses, without prejudice. Differences between old age and youth, with youth the norm, are rather transformed into pathologies and ceded to biomedicine. Thus, one by one, biomedicine putatively could chip away at the conditions that affect older people and label each condition a disease. "It's just old age" is an anathema in this world view.
Because people with AD can no longer enact the ideals represented by autonomy—self-control, independence, and living as one wishes—they also risk losing the respect of others, a further threat to self-regard. As Ballenger's work further shows, the selfhood of the person with AD is not only tacitly challenged as it is for many older people but it is actively and explicitly denied even by popular self-help books.
From Senility to Alzheimer's Disease
The dominant understanding of Alzheimer's disease for the last 40 or so years reinforces the conviction that it is a disease and not an extreme version of normal aging. Based on Alois Alzheimer's brief report on the case of Frau Auguste D., a 56 year-old woman, the great German nosologist Emil Kraepelin gave this condition its eponymous name in 1910, thereby separating it from familiar cases of senile dementia. Why Kraepelin did this and the research that followed in its wake constitutes a significant and fascinating part of Ballenger's book. Did this new disease differ from senility and, if so, how did it differ? Was it a pre-senile condition as Kraepelin's nosology suggested? Alzheimer himself seemed to doubt that it was a new disease.
Unlike a medical diagnosis such as gallstones, AD is peculiarly open to being perceived and understood contextually. As Ballenger so carefully delineates, the medical profession spoke in many different voices in the first 40–50 years after Kraepelin named AD. We don't know why he made this decision but there seems to be little doubt that the reasons went far beyond the visible and identifiable pathology. It is no surprise to our postmodern consciousness that the conceptual worlds of the investigators filtered their interpretation of the evidence before them. Rooted in disciplines and their characteristic ways of thinking, in background conditions, in the existing fund of knowledge and the belief systems that nurture knowledge production, conceptualizations of pathology and behavior made some observations and interpretive possibilities more likely that others.
The medical community interpreted and re-interpreted AD against backdrops that included the social condition of the profession at different times, the seeming intractability of the condition to interventions and the problems this created for state mental hospitals, confusion over the lack of clear correlations between behavior and neuropathology, and later, the improvement in technology, especially the electron microscope. Based on my own work (Holstein, 1996), I found the power of age norms to be particularly significant in the way biomedicine viewed AD. Conventional conceptions about disease and health, based on these norms, and the belief that mental decline in old age was an expected part of an overall pattern of decline, meant that what was clearly "abnormal" at 50 might be quite normal at 70. As with a Rorschach test, we are predisposed to see difference when we are looking for difference and vice versa. Thus, the way that any issue is framed is a choice; it can be framed otherwise.
By the 1960s, the conceptual worlds of neuroscientists were ripe for a coup de grace—the definitive, at least according to biomedicine—assertion that Alzheimer's was a disease. This assertion was based on fairly specific pathologies. Therefore, the condition was decidedly not an extreme version of normal aging, and age was irrelevant in diagnosis. Although its behavioral manifestations varied, memory loss became the central defining feature of the new AD. Robert Katzman, the American neurologist, who wrote one of the seminal papers that collapsed senile dementia and AD into a single diagnostic category, suggested in a 1994 interview with this reviewer, that his team's decision to focus on AD was almost a chance event. The team's interest was neurodegenerative diseases. Changes in the lab, especially the loss of their neurochemist, made AD and not some other disease the logical choice for research. Undoubtedly the research would have occurred anyway although perhaps not at Albert Einstein in New York City. It was "in the air," with labs in the United Kingdom and the United States turning their attention to it. But I find intriguing the role of chance in what we choose to study and why.
Certainly by the 1970s the dominant mode of responding to AD was in place—cure above care, if allocation of resources is the measure, pathology and disease not personhood and families. This strategy fit the faith in science, served as the path toward research dollars, and indeed has led to a far better understanding of AD at the molecular level. With few exceptions this regnant view was unchallenged.
The ramifications of this change were very significant. In particular, AD was transformed from being a very rare pre-senile condition into one that affected significant numbers of people, so many in fact that lurking behind the disease consensus the wonderment about its links to the normal processes of aging never quite disappeared. The immediate sequels were the birthing of the AD movement, the creation of a public consciousness about AD, and the embracing of a unitary definition despite anomalies in pathology and behavioral manifestations. Robert Butler, the first director of the National Institutes on Aging, selected it as one of the Institute's primary foci. But to this day, despite all the publicity, what is familiar to those of us reading this journal is less familiar to others. Even Essie, a well-educated professional, said "but it's not senility."
The Self, AD, and Moral Obligation
Discussions about the self and personhood are important not only because they help to explain the dread that AD elicits but also because they guide our thinking about our obligations to people with AD. Never an easy question to answer, the question of obligation has recently become even more complicated. Ballenger notes that caregiver narratives, which describe "some essential element of a person's identity" that remained intact "no matter how much brain deterioration he or she suffered" (p. 163), see what Post (1995) asked us to see some years ago—to be a person is more than about cognition. While Ballenger describes caregiver views as embodying a "romantic notion of the self," these views resonate with scholarly reflections about the self and AD over the past 20 years (Sabat & Harre, 1992; Post, 1995; Herskovitz, 1995; Kontos, 2006. They also parallel the observations of Benjamin Rush, a great eighteenth century American physician. Rush argued that the most serious loss of memory or understanding did not impair the truly human qualities—the moral and religious faculties, the possibility for receptivity to human kindness and affection. When people with AD, their caregivers, professionals, and others see a person, albeit limited in important ways, rather than the shell of a person, our moral obligations change.
At a minimum, we must start from a commitment to fundamental decency, the demand not to humiliate. Yet, we unconsciously humiliate often when we denigrate simple acts of kindness as "just" remnants of a once capable social self or when we inadvertently correct a "wrong" memory. A commitment to honor the strengths individuals retain, notice and reflect their feelings, and involve them in decision-making about their lives for as long as possible are also key. Our obligations then extend to family and other caregivers. It must be possible for families, and others to continue doing what they are already doing—sustaining memory, and socially creating identity—by easing their instrumental care giving responsibilities which leave little time for these enhancing roles.
Feminist scholars help us think about these obligations as they make what should be an obvious point—since dependency is part of the human condition, a just society is obligated to guarantee competent and affectionate care, resting on moral claims but calling for political responses (Tronto, 1993, Clement, 1996). Feminist philosopher Eva Kittay (1997) answers this way: "To each according to his or her need for care, from each according to his or her capacity for care, and such support from social institutions as to make available resources and opportunities to those providing care, so that all will be adequately attended in relations that are sustaining" (p. 252). This response is non-negotiable if we are to consider ourselves a just society. Protecting dignity as we give care is more than a rhetorical aim. Dignity is rooted in relationships with others. Hence, care, especially in community, is one way to overcome the dreadful isolation that people with dementia and their caregivers so often feel. We need communities that can cope with the profound and long-term suffering that is central to the experience of AD (Smith, 1992).
A Way Forward
Ballenger assesses where our focus on biomedicine has taken us and finds this path wanting. Like Ballenger, I believe that much has been done and much more can be done to mitigate losses, to preserve the strengths and capacities that are left rather than forever noticing what is gone. Ballenger argues a point that is often forgotten—that interactions between patient and those around him or her can have important psychological effects. Quoting Sandor Gilman (1988), he observes, that the way in which the patient is perceived "structures the patient's treatment, the patient's status, the patient's self-understanding, as well as the patient's response to the complex interaction of social and biological factors that we call ‘disease’" (p. 35).
Deeply influenced by the work of the late Tom Kitwood and his colleagues (e.g., Kitwood & Bredin, 1992), I believe that how we are treated matters greatly in how we act. Hence, I watch with chagrin as Essie's sisters, whom she keeps assuring me are only concerned about her welfare, treat her as if she is already incompetent. Watching for signs of change, Essie's sisters, of course, saw them. She crossed the line, as Ballenger discusses, between the normal and the demented. She was no longer a vibrant, attractive, bright 68 year-old woman with the beginnings of a condition that gradually would transform much of her life but, rather, a walking, talking diagnosis that required solicitous care and protection.
Reflections
I envision a woman I knew in a nursing home. A petite woman, flinging her dress above her head, greeted me with these questions as I got off the elevator, "Do you know who I am? Who am I? Do you know who you are?" I fear being her and losing the ability to take a stand, to recognize the "horizon within which I am capable of taking a stand" (Taylor, 1984, p. 27). But then I remember the couple, in an adult day services center, who held hands and looked at each other so longingly that I had to turn away. That image, I think, taps into Post's criticism of hyper-cognition. Yet, it does not ease my fears. I seek deliberate, conscious awareness of my horizons of meaning. Even in what might be a momentary loss, I fear drift. Who is to say, however, that this couple, who leave the adult day center with their respective families at the end of the day, did not have something as vitally important as the books I wait to read or the words I am now writing that I so fear losing. This is the lesson I—and others who share the fears and dread that Ballenger so effectively analyzes—must learn.
I want to affirm the importance of the work that Ballenger has done in this book. He covers a large territory that includes notions of the self and their cultural importance, to the complex untangling of almost a 100 years of situated biomedical explorations of this malady we now almost universally think of as a disease. He reminds us that this position was not always so. Whether the malady is a disease or an extreme version of normal aging, is interpretive as well as scientific and so not free of ideology and perspective. Once it was affirmed as a disease that was explicitly not about normal aging, a vigorous campaign to get it on the public agenda followed. This led to the formation of the AD movement and the focus on "cure" and the tragic dimensions of "lost lives"—especially for the movement, the loss of middle-class lives of achievement. Yet, in the past decade, in partial reaction to the dominance of biomedicine, but also as the result of earlier diagnosis, we have witnessed the emergence of alternative perspectives on the self, on personhood, and on moral obligation. These perspectives come from persons with AD, from family members, and from qualitative research. As a result, we, who are still on the outside looking in, can begin to glimpse how it may be possible to live more fully than we had ever imagined.
Ballenger both informs and provokes thought. One caveat, of which he is aware, is that this book is about the white, middle class, the formerly capable who are now sadly losing some of their former capacities and about devoted family members who see (or sometimes don't see) the real person behind the dementia. To further these efforts by family-members—and by growing numbers of professionals -- to reclaim the person whom the diagnosis often obscures, matters not only for the person with AD but as grounding for richer social and moral responsiveness.
If the self is socially and historically situated, as many feminists claim, rather than detached, individualistic and unitary, then we are able to broaden our conceptions of what it means to be a self. I am not certain that this broadening will be able to end or even mitigate the fear associated with AD but it might inform our language—perhaps from "loss of self" to a changed self—and the policy responses we then feel obliged to develop. Language is, after all, one of the only ways we have to communicate meaning. What if we found ways to help people with AD "imagine themselves otherwise," to borrow an apt phrase from a feminist scholar (MacKenzie, 2000), that is, different from the common tropes that focus primarily on loss of memory as the experience that somehow captures everything else? One end might be a broader recognition of the possibilities for maintaining self-respect for as long into the condition as possible.
Many families try to jointly re-connect fragments of the person's former and current self, but any sense of wholeness will be fleeting. Perhaps this is true for all of us, that we have only momentary glimpses of wholeness but we can preserve the hope that such moments will come again. Will we, however, be able to overcome the deep anxiety when the horizons by which we have lived our lives, often in flux and uncertain but still a vision about which we are conscious, become harder and harder to frame?
My fears as I described them are captured in the image of the petite, gray-haired women in the nursing home and her profound longing for a sense of self. It is less influenced by the warmth and smiles so beautifully captured in Alive with Alzheimer's (Greenblatt, 2004). I know that I will always fear loss of cognitive functioning. It has been part of my "horizon of meaning" for all of my adult life but it has never been all. Like the value of community in America, generally submerged by the dominant motif of individualism, I think rescuing the non-cognitive as Post advises, combined with a richer imagery of how people with AD can and often do live, might mitigate the almost visceral fear that continues to infuse a condition that, if we live long enough, many of us will experience.
References
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