Living with Alzheimer's

Managing Memory Loss, Identity, and Illness

Renée L. Beard

• Éditeur: NYU Press
• Année: 2016
• ISBN:
  9781479849253
• Sujet: Social Sciences
• Sous-sujet: Sociology

News of Alzheimer’s disease is constantly in the headlines. Every day we hear heart-wrenching stories of people caring for a loved one who has become a shell of their former self, of projections about rising incidence rates, and of cures that are just around the corner. However, we don't see or hear from the people who actually have the disease. In Living with Alzheimer’s, Renée L. Beard argues that the exclusively negative portrayals of Alzheimer’s are grossly inaccurate. To understand what life with memory loss is really like, Beard draws on intensive observations of nearly 100 seniors undergoing cognitive evaluation, as well as post-diagnosis interviews with individuals experiencing late-in-life forgetfulness. Since we all forget sometimes, seniors with an Alzheimer’s diagnosis ultimately need to be socialized into medicalized interpretations of their forgetfulness. In daily life, people with the disease are forced to manage stigma and the presumption of incompetence on top of the actual symptoms of their ailment. The well-meaning public, and not their dementia, becomes the major barrier to a happy life for those affected. Beard also examines how these perceptions affect treatment for Alzheimer’s. Interviews with clinicians and staff from the Alzheimer’s Association reveal that despite the best of intentions, pejorative framings of life with dementia fuel both clinical practice and advocacy efforts. These professionals perpetuate narratives about “self-loss,” “impending cures,” and the economic and emotional “burden” to families and society even if they do not personally believe them. Yet, Beard also concludes that in spite of these trends, most of the diagnosed individuals in her study achieve a graceful balance between accepting the medical label and resisting the social stigma that accompanies it. In stark contrast to the messages we receive, this book provides an unprecedented view into the ways that people with early Alzheimer’s actively and deliberately navigate their lives.

1

The Meaning of Memory Loss

Illness, Identity, and Biography

The first case of Alzheimer’s disease (AD) was observed by German psychiatrist Alois Alzheimer in 1906. Alzheimer’s is a progressive brain disease that affects memory and other functions of daily living. The leading cause of dementia, AD is currently constructed as a problem of epidemic proportion. Historically, such perceptions were not the case. Scientific debate about the qualitative difference between age-related memory loss and Alzheimer’s persists,1 as does skepticism regarding the efficacy of treatment alternatives.2 Yet the overwhelming majority of research efforts and monies remain narrowly focused on cause and cure. Together with the related focus on prevention, while laudable for its potential long-term benefits, the everyday lived experiences of AD are erased for those currently diagnosed and their family members alike. Contemporary epidemiological projections engender a crisis rhetoric, or “apocalyptic demography,”3 that may contribute to mis-/overdiagnoses of Alzheimer’s and its potential precursor,4 and/or the conflation of memory loss and AD, as suggested in the prologue.

It’s hard to believe that in the 1980s, when I had my first job in a nursing home, people with memory loss were said to have “Oldtimers”; something so common that while certainly undesirable, it was a far cry from the death sentence it is today. Most people that I have talked to about my research over the past two decades have either known someone with Alzheimer’s or vehemently declared that they themselves had it. Why the relatively recent preoccupation with a condition that was discovered over a hundred years ago? And why do Americans assume that people with AD and their families warrant such pity? How did we get to a place where Alzheimer’s is assumed to render meaningful interactions and moments impossible? Who tells us this and why?

While Alzheimer’s is seemingly ubiquitous in contemporary American society, it unfortunately reveals itself far less through the life stories of real people with the condition than the rapidly escalating appearances in the public media, Hollywood movies, or on television programs and best-selling book lists that reinforce an almost universally pejorative view of the condition. Where are the real-life stories of people with Alzheimer’s? And what can they add to the cultural dialogue that so influences their experiences? This chapter addresses what it means to be ill in a general sense in a health-obsessed society, what it feels like to be seen as old in a youth culture, how social perceptions of dementia shape notions of self-worth in what bioethicist Stephen Post calls a hypercognitive society, and how the story we tell about ourselves is threatened if we are presumed incompetent by others.

Although Alzheimer’s disease was discovered well over a century ago, only since the 1980s has it been a topic of global health interest. In large part, the relatively recent surge of attention has been the result of clinical expansions—initiated by the National Institute on Aging (NIA) and the U.S. Alzheimer’s Association in the late 1970s—to include what was previously called senile dementia (colloquially known as Oldtimers) under the rubric of Alzheimer’s. This historical shift in the biomedical conceptualization of AD transformed senility, formerly viewed as a common component of aging, into dementia. The processes through which AD became identified as a distinct entity and attempts were made to categorize it as dementia generated both the widespread popularization of AD and a subsequently massive increase in research monies (including the notable 1974 establishment of a National Institute (on Aging) devoted—at least initially—to its cause). Labeling senile dementia as a specific disease category reversed the notion of cognitive decline as an inevitable part of aging and brought both aging and memory loss more squarely under the purview of medicine.

Since this redefinition significantly increased the numbers of individuals reported to have AD, back in the 1980s Alzheimer’s became the fourth or fifth leading cause of death in America—5 seemingly overnight. The U.S. Alzheimer’s Association currently purports that 5.4 million Americans have a diagnosis of AD and their annual report claims, “Over the coming decades, the aging of the baby boom generation is projected to result in an additional 10 million people with AD. Today, someone in America develops AD every 68 seconds. By 2050, there is expected to be one new case of AD every 33 seconds, or nearly a million new cases per year, and AD prevalence is projected to be 11 million to 16 million.”6 Global projections suggest that the estimated 46.8 million people living with dementia in 2015 will nearly double every twenty years to 74.7 million in 2030 and 131.5 million cases by 2050.7 The problem with these estimates, it should be noted, is that they are taken directly from AD societies, and critical scholars suggest, “It is evident that these figures are designed to incite political action and increase funding for AD research.”8 Furthermore, “While projections are useful in highlighting the scale of the problem were risk factors to remain stable over time, this is clearly an untenable assumption.”9 AD incidence and prevalence rates cited in medical journals and by governments are nonetheless drawn from sources with such potential conflicts of interest. In fact, there is reason to believe that dementia prevalence has remained stable or even declined in the past twenty years.10

Since age is the only known risk factor for Alzheimer’s, prevalence and incidence rates have been predicted to double roughly every five years after the age of 60 and claims at the turn of the century stated that 50 percent of people over 85 were affected.11 A more recent framing by the Alzheimer’s Association reports that 32 percent of Americans over 85 currently have AD.12 If one out of every three of us in that age group has it, can it be based solely in biology? Despite what anthropologist Margaret Lock refers to as “Entanglements of Dementia and Aging,” Alzheimer’s has been effectively presented as a global public health issue. Perhaps as a result, even minimally efficacious medications have been championed despite the current lack of a cure or even moderate symptom reversal. A major effect of this biomedical shift, however, has been the steadfast effort to detect Alzheimer’s as early as possible, ideally in its presumed preclinical period. The medical impetus to diagnose people with memory loss as soon in the disease trajectory as conceivable generates enthusiasm for classifying preclinical AD, or what is called mild cognitive impairment. As a classic case of “diagnostic expansion,”13 this emphasis on early diagnosis designates AD as a “spectrum disorder.” Drawing on seminal medical sociology, in this book Alzheimer’s is shown to be a social artifact and an extension of the medical gaze that relies heavily on the technologies of self14 commonly accompanying the rise of surveillance medicine.15

Significant dissent regarding the conceptual basis, the diagnostic algorithms, and the relationship between MCI and similar terms has existed since Alzheimer’s was coined over a century ago, and current practitioners vary widely in their disclosure of MCI to so-called patients. Notwithstanding disputes over terminology, however, a phase of observable cognitive impairment is believed to exist prior to a person exhibiting signs meeting clinical criteria for dementia. Importantly, this potential precursory period is seen as the best time to target pharmacological interventions. This also means, of course, that clinical trials and illness narratives alike can commence much earlier in the course of cognitive decline than ever before, offering both hope and hype of delaying if not preventing Alzheimer’s and understanding the earliest points of transition in first-person experiences of the illness.

Despite this scientific uncertainty and dispute involved in diagnosing the potential precursor to Alzheimer’s in theory, in practice MCI is routinely diagnosed in American specialty clinics. This has resulted in the identification of individuals who have minor memory loss and thus are quite cognizant of and able to articulate their experiences. In the case of Alzheimer’s, and any condition thought to have preclinical stages, individuals who seek medical attention for memory loss—even in an effort to get what is referred to as a baseline, as the prologue demonstrates—are immediately suspect.16 In practice, most seniors seeking cognitive evaluation at specialty clinics are in fact diagnosed with AD, and the older one is, the greater one’s potential for becoming an Alzheimer’s patient.

Disparities between so-called lay and expert knowledges have long been of interest to the social sciences. Medical sociologists have historically conceived of the interface between doctors and patients as what Monica Casper and Michael Berg referred to as a molding process through which a person and his/her situation are constructed or reconstructed to render them manageable.17 Such processes engage larger debates about expert and lay knowledges, and the boundaries delineating and defining them. The data I present in this book highlight the mechanisms through which such molding transpires. Molding is even at times perceived by patients as advantageous in the medical evaluation and subsequent encounters surrounding AD. Yet various points of patient resistance were also discovered.

The U.S.-based Alzheimer’s Association estimates that half of those with AD are in the early stage.18 Through the quest for earlier diagnoses, biomedicine generates patients who can and do advance different views and experiences of medical encounters and everyday life with Alzheimer’s. In this way, patient subjectivity has the potential to shape clinical practice and social discourse (and vice versa). To examine this dynamic, I gathered expert testimonials from both the clinical and advocacy realms. The primary goal of this book is to investigate the diagnosis of memory loss and subsequent receipt, that is, the managing of memory, as an emergent sociocultural phenomenon with economic, medical, political, and historical rationalities operating. My research uncovers the social processes through which forgetful older members of society are transformed into Alzheimer’s patients. That is, how seniors are socialized by medical structures and the mass media into seeing their forgetfulness as symptoms of a disease, and the costs as well as benefits of this process for those most deeply affected.

Within the long tradition of illness narratives, illnesses are seen to influence biographies and identities to instill meaning and give voice to suffering. Anthropologist Arthur Kleinman is often said to have been a seminal advocate for exploring narrative structures of illness. Kleinman and others have examined folk illness beliefs and behaviors, or explanatory models of meaning-making. Sociologists Anselm Strauss and Barney Glaser pioneered the use of grounded theory to understand the meaning and experience of chronic illnesses from the perspectives of both diagnosed individuals and their family members. These methods and an emphasis on the relationship between illness and identity within context inform the analysis presented in this book. The findings revealed here further sociological theorizing on identity and biography by arguing that illness may be both chronic and terminal, demonstrating that illness can be experienced as disruptive to and reinforcing of identities, insisting that identity be seen as fluctuating rather than a fixed, linear process, and revealing that even individuals with conditions that theoretically compromise their storytelling capacity can narrate their illness experiences. Since recovery identities are unattainable for those with AD, constructing Alzheimer’s as the quintessential postmodern threat to self risks assailing both personal and social worth, which sociologists have long claimed threatens a social death for affected individuals.

The Study

As evident from the prologue, the future painted in medical encounters for memory loss is often one of a demented individual whose complete incapacitation is imminent. The clinical delivery of the information to Mr. and Mrs. R was not qualitatively different from the roughly fifty textbook cases of late onset (or typical) early-stage Alzheimer’s disease19 I observed at the two specialty clinics during my eighteen-month study. When I looked up the official diagnosis at the memory clinic, Mr. R’s chart read: “Cognitive Impairment not meeting criteria for dementia; mild neurocognitive disorder with undetermined etiology. Causal factors: somewhat likely AD.” Officially, this gentleman had no diagnosis. Yet when I read the information I found myself uncertain about what, exactly, was going on. If it wasn’t dementia, how could it be that Alzheimer’s was “somewhat likely” to be causing it? How certain could the doctors be about knowing this? And, perhaps most pointedly, how helpful was it for Mr. and Mrs. R to have this information?

Mr. R’s story highlights some important issues that will be taken up in this book. The medical efforts to diagnose Alzheimer’s as early in the assumed trajectory as possible—in an attempt to intervene and stop decline—generate unintentional consequences that are germane to medical sociology and have very real potential costs to individuals who are so labeled. Most centrally, the medical or scientific consensus on the etiology, the protocol for treatment options, or the ethics of diagnosing MCI20 remains lacking. Claims made by at least one leading neurologist about “The Myth of Alzheimer’s” demonstrate that contestation over Alzheimer’s itself is noteworthy. Accordingly, Lock argues, “the assumed ‘factness’ of Alzheimer’s as a disease that inevitably causes people to become demented is being questioned by a growing minority of experts.”21 Although the concept of mild cognitive impairment is relatively easy to grasp, the development of precise diagnostic criteria has been slow to emerge despite neurologist Ronald Petersen’s coining the term in the mid-1990s. In part, this is related to the dispute within the scientific community regarding the exact nature of the state and whether or not it constitutes pathology. Since the transition between normal aging and dementia is largely thought to occur insidiously over many years, scientists have recently begun purporting that this period of slow cognitive decline preceding the diagnosis of Alzheimer’s can be identified and quantified via clinical guidelines. In 2011, after I conducted my study, new diagnostic criteria were put forth jointly by the National Institute on Aging and the U.S. Alzheimer’s Association that officially identify MCI as the stage preceding AD.

While it is far too early to understand the implications of these new criteria, MCI was initially introduced in the 1990s as a diagnostic syndrome that coincided with very early Alzheimer’s pathology. Despite the lack of clinical consensus on causation, many scientists claim that MCI should be considered a cognitive syndrome that implies a likely predementia neurodegenerative process. Longitudinal studies report vast differences in conversion rates from MCI to AD, and some even reveal a full return of memory functioning; thus, the legitimacy of mild cognitive impairment as a precursor to Alzheimer’s remains debatable. Consequently, there are also disagreements about treatment protocol and serious ethical considerations when employing MCI as a clinical diagnosis. In fact, a major difference between the two sites I studied in this research was the fact that one (the psychiatrically based center) did not recommend medications at all for MCI and the other (the neurology based clinic) routinely did so. The lack of consensus regarding the efficacy of treatment options led clinicians to place more or less emphasis on medications even within sites. Disparities between specialty clinics and general practitioners can be assumed to be even greater. The ethical matters involved in this debate relate to the psychosocial consequences of diagnosing individuals with mild cognitive impairment in the absence of scientific or clinical consensus regarding etiology and treatment options. The magnitude of this potential threat of a preclinical diagnosis is evident in the opening story. Earlier diagnoses extend and arguably intensify both the medical gaze and the phenomenological experiences of memory loss. The potential effect of diagnosing someone with an unknown, untreatable condition has yet to be studied, and consequently social scientists, medical practitioners, and medical ethicists alike caution against too readily diagnosing the earliest stages or identifying biomarkers of memory loss.22 Given the conflation of terms such as dementia, memory loss, mild cognitive impairment, and Alzheimer’s disease portrayed in Mr. R’s story, the ethical implications are evident.

Another problematic of interest to medical sociology highlighted by the opening story is that this lack of consensus provides clinicians with a good deal of discretion in diagnosing and treating mild cognitive impairment.23 This high level of clinical judgment in the diagnostic process generates wide variability among practitioners as well as between specialty clinicians (neurologists, neuropsychiatrists, and psychiatrists) and general practitioners. Without knowledge of the scientific debates within which MCI exists, Mr. and Mrs. R clearly thought that Mr. R had Alzheimer’s and was on the doomed trajectory of someone with a progressive, degenerative illness. The fact that Mrs. R’s mother had lived with Alzheimer’s for fifteen years led them to have a very specific perception of what their future would look like. After his general practitioner assured him that his current memory loss was age-related, Mr. R proudly showed me the letter to that end from his physician. Mr. R’s doctor held a view common among general practitioners. In one survey of general practitioners, 34 percent saw no benefit to an early diagnosis and 66 percent said they in fact foresaw negative consequences from making an early diagnosis.24

This leads to a related problem of concern to medical sociology. In some cases there is an inconsistency between the way memory specialists and general practitioners define pathological memory loss. The lack of clarity regarding the existence of MCI and subsequent ethical considerations significantly confounds the experiences of people seeking medical care; particularly when, neve...