Alzheimer's Family

A compelling historiography of Alzheimer's disease has been emerging, one that centers on Kraepelin's motives in naming an "eigenartige " 1906 finding of his student and colleague Alzheimer as a distinct disease.^[101]Eigenartige has been translated as characteristic or peculiar. The standard narrative of Alzheimer's assumes the former gloss, that Alzheimer was conscious of identifying a pattern of neural degeneration and plaque formation suggestive of a pathological syndrome distinct from the "normal" anatomical findings of senile dementia, and that Kraepelin was merely honoring his achievement in eponymously naming the syndrome Alzheimer's disease. G. E. Berrios has convincingly and rather elegantly suggested the latter gloss, that Alzheimer was struck by the peculiar characteristics of the symptomatology of the middle-aged housewife brought into his clinic by her husband and of the neuropathology of her sliced and silver-stained brain.

For Berrios, the critical and still-opaque moment is the decision of Kraepelin and his colleagues to in effect rewrite Alzheimer's case materials, stressing only cognitive symptoms rather than cognitive, affective, and delusional symptoms, only a degenerative etiology and not arteriosclerotic and degenerative etiologies, and only onset in middle age rather than a span encompassing middle and old age. Through this set of exclusions Kraepelin could construct a distinct disease category, whereas for Alzheimer and most of his contemporaries the case of the middle-aged housewife was peculiar precisely in its early onset and extreme presentation of an existing disease category. Berrios notes: "The most common interpretation by those living and writing during Alzheimer's period was that the 'new' disease simply named cases with early onset, marked severity and focal symptoms. As the cognitive paradigm consolidated, a clear move toward narrowing down the syndrome by, for example, dismissing the presence of delusions and hallucinations can be detected. Likewise, arteriosclerosis was quietly dropped, and became an exclusion criterion"^[102]

Kraepelin's motives remain a puzzle for Berrios, perhaps given his tendency to split Kraepelin's practice into distinct and fairly seamless "scientific" and "nonscientific" realms.^[103] His analysis, however, still helps clarify the central puzzle of the historiography of the disease, its disappearance and rebirth. As Berrios notes, the correlation of plaques and tangles with the symptoms of dementia preceded Alzheimer's 1907 report,^[104] and subsequent work demonstrated the same constellation of symptoms and pathology with clinical onset in old age.^[105] The classic narrative of the modern Alzheimer's movement—that the great pathologist was limited by the ageism of the time and could only see presenile dementia as pathological, awaiting the late 1960s for medicine to recognize that Alzheimer's was also an apt characterization for senile dementia and thus to inaugurate the separation of normal aging from pathological dementia—presumes Kraepelin's exclusions. Yet the disappearance of Alzheimer's disease, its failure to capture the language of senility treatment and research for half a century, suggests two alternative processes not adequately framed by "ageism," the first of which Berrios illuminates: Kraepelin's exclusionary construction of a presenile nosology ran against an emerging consensus and failed to provide a fruitful site for the laboratory or clinic.^[106]

The other critical process, of course, was the development of arteriosclerotic dementia, which far from being relegated to the sidelines by Kraepelin's exclusion, became the dominant concept in senile dementia research and clinical practice for much of the twentieth century. Unlike the degenerative changes of Alzheimer's, the vascular changes of arteriosclerosis were central sites of pharmaceutical research and intervention, and new classes of vasodilatory drugs emerged as senility treatments. Conceptual and commercial practices sustained one another well into the 1970s, in the United States, and later in much of Europe, Asia, and elsewhere.

There are multiple ways to think about the events of the 1960s through 1980s, chronicled at length by Fox, Gubrium, and Lyman: the emergence of a profes-

sional and later a popular Alzheimer's movement in the United States, its powerful and in some senses ironic medicalization of old age, and the various routes of its attempted globalization. The 1970s and 1980s movement chronicled by Fox and Gubrium emerges explicitly in terms of the anti-ageist critique—stressing the normalcy of old age—of geriatrics. But the ideology of geriatrics and Fox's careful micropolitical analysis beg the question of why Alzheimer's was rediscovered as senile pathology precisely when it was and why the popular culture of Alzheimer's hell spread so quickly.

In part, Alzheimer's reemerges in the United States at an interesting time: the middle- and upper-class "young old" were appropriating the mantle of the elderly in the creation of a social movement, and popular and official concern in wealthier industrialized countries was increasingly taking up the imminent burdensomeness of a growing gray wave. On the one hand, groups like the American Association of Retired Persons (AARP) formed powerful and well-heeled lobbies, promoters of pedophobic Sun Cities created planned gerontopoli where children and not the elderly were marginal, and resistance to ageist economic practice such as forced retirement spawned an "aging and work" subfield of social work and fairly class-specific senior employment agencies like the American group Operation ABLE. The normalcy of decline—central to Nascher's physiology despite the ideology of the new field—was increasingly resisted, and normal aging came to signify the wealthy retirees having fun pictured on the pages of Modern Maturity , the AARP's magazine. Normal aging signified an extension of the ideology of the American Dream and of its dominant mood of fun.^[107]

On the other hand, rejecting the burdensomeness of the dependent elderly and preserving society's collective ability to leave home and roam America's byways—like Frank in his fantasy of authentic pre-Alzheimer's personhood—was legitimated through a redefinition of the most needy elderly as encompassed by the nonpersonhood of their disease. The thematic of Macfarlane's analysis of village communities in Tudor and Stuart Essex is repeated: as the legitimacy of the gift—no longer the giving of food to widows by individual householders but the guaranteed provision of income to all elders by the state—becomes contestable, so the mind of old people—no longer marginalized older women but the so-called frail elderly—becomes the object of unambiguous pathology, here not the subterranean associations of witchcraft but the earthly hell of Alzheimer's disease.

Given their rough class logic, the two turns—gerontocratic and gerontophobic—are not usually in opposition to one another. When an old American named John Kingery was abandoned, apparently by his daughter to avoid the costs of maintaining him at a nursing home, at a dog track in Idaho hundreds of miles from his family, a spokesperson for the AARP lamented that such an action had to happen but sympathized with the daughter:

"granny dumping, as it's called, was unheard of 15 years ago but now the anecdotal evidence tells us it has become somewhat of a trend," said John Meyers, a

spokesman for the American Association of Retired Persons, which has 33 million members. "Not a day goes by when a hospital emergency room somewhere in America doesn't have a case where some elderly person has been abandoned, usually by the children".... "The fact that children abandon their parents, as horrible as it is, is indicative of the terrible balancing act that care-givers are stuck with."^[108]

Meyers advocates federal support to families for adult day care centers, giving beleaguered children a break. AARP members are at least as likely to be givers as recipients of care; one can join and begin receiving various senior citizen discounts at age fifty. Meyer's response, like the Newsweek articles, reminds us that being a caregiver is experienced as the hell of the tabloids by older as well as younger children, that the desire behind the hegemony of Alzheimer's pathology and its denial of subjectivity to certain old bodies is located less in the politics of age per se than of generation. His response again underlines the critical role of gender in the structuring of pathology. Mr. Kingery is granny-dumped; his expendability is reinforced through the figure of the pathetic old woman. The Murphy bed reappears as a generational collective fantasy.

The language of legitimate pathology reflects not only the view under the microscope but the social construction of the person identified with the slice of tissue. The vascular damage and necrosis of multi-infarct dementia and the plaques and tangles of Alzheimer's continue to share the etiologic limelight, but it is plaques and tangles that become the key signs of the demented brain, and "Alzheimer's" that becomes a medical idiom for dementia and lay idiom for senility. The power of Alzheimer's over other medicalizations lies in part, as Gubrium and Lyman have pointed out, in its clear drawing of the line between normality and pathology and its legitimation of control as therapy. Beyond this, Alzheimer's is structured as an embodiment of excess. Its "gold standard" remains the plaques and tangles that appear in most aging brains but in excess in Alzheimer's.^[109] Plaques are real, demonstrable, and countable. Given the emphasis within the Alzheimer's movement on the continual reiteration of the disease's pathology—one of the two "enumerative obsessions" present at Zagreb—plaques and tangles become the enumerable source of proof. Old parents place demands on their children; these demands do not make Frank's dream of freedom any more realizable. The behavior that has come to be called dementia makes particularly enormous demands on children; these are far from the only demands, but contribute critically to a moral economy in which the oldest old demand too much. Daughter Regan says to Lear, "I pray you, father, being weak, seem so."^[110] The legitimacy of the claims of old persons on their children is inevitably contested. Excess plaques and tangles are demonstrable signs of a condition of this existential excess of the old. They come to stand for the person with dementia not because of their universality—vascular or multi-infarct and other types of dementia do not necessarily present with the pathology of Alzheimer's—but because of their semantic potential, as conveyers of what the patient means to others. The neuropathology of Alzheimer's—an unambiguous disease that can be counted, excess that can be re-

vealed for all to see—proves the logic of senility. The interpersonal and existential crises of aging—its excessive demands—can be reduced to the disturbance of excessive mind. As the contest to define a person's old age is increasingly appropriated by children, Alzheimer's becomes the quantification of excess.

Unlike the language of climacteric excess, the modern concept of Alzheimer's resists the deployment of gendered pathology, in naturalizing its claims to speak of age. Whereas Charcot and Nascher locate the conditions of possibility for a science of the old body with the institutionalized body of the old woman, Alzheimer's first patients are defined by him not as a priori institutional material for a science but persons from the outside whose reason for entry into the institution is in itself the critical fact anchoring a reading of their cellular pathology. The patient of the 1906 report had been "a woman, 51 years of age," who

presented as the first most striking mental symptom, ideas of jealousy concerning her husband. Soon after, a rapidly developing mental weakening was noticed; she would lose her way about in her own home, throw things around and hide herself for fear of being killed.... In hospital she seemed perplexed, was disoriented for time and place, occasionally complained that she understood nothing.... The patient finally was completely demented; confined to bed with contractures of the lower extremities; and passed urine and feces involuntarily. In spite of greatest care decubitus developed. Death after a duration of 4 1/2 years.

Subsequently, "after the Bielschowsky silver impregnation method" Alzheimer noticed two features on slides of her cortical brain tissue: "tangled bundle[s] of fibrils" and "a deposition of peculiar stuffs."^[111]

The second case of what had already become known as Alzheimer's disease, published in 1911, was of Johann F., a fifty-six-year-old day laborer and "moderate drinker" sent in 1907 to the Munich psychiatric clinic "by the overseers of the poor." For the previous six months he had "been forgetful; lost his way easily; could either not perform simple tasks or executed them awkwardly; stood about in an aimless manner ... and no longer bathed." Over the course of the next three years Alzheimer documented Johann F.'s "manifest deterioration," efforts to pack his clothing and leave the institution, increased incontinence, continual weight loss, and eventual death "from symptoms of pneumonia."^[112]

The fact that pathology is first searched for and discovered in a jealous and initially hysterical woman and then in an unproductive day laborer does not allow one to reduce either the materiality of dementia or Alzheimer's reasoning as a scientist to the equally material subalterity of these first "Alzheimer's patients." Yet behind the inquiry of the scientist wait the concerns of the husband and the overseer; Alzheimer's at its moment of origination is rooted in a specific need to explain the progressively more demented minds of the already dependent. Its indelible pathology—its incontrovertible plaques and tangles—demonstrates a pathology that is rooted in far more than the very real changes Alzheimer recognizes and reconstructs as clinical signs. The possibility of the neuropathological sign as stigmata draws on the social dependency of the person being redefined

through it as unambiguously pathological. From its very first two cases, Alzheimer's has been situated at the moment of institutionalization and the conditions of its possibility.

This moment and these conditions are overdetermined. Social artifacts of shifting categories of dependency and technobiological artifacts of new drugs, new mice, and new clinical tests will affect and transform each other. Alzheimer's may take hold as clinical reality in India even in the absence of a so-called health transition. The impact of these new technobiological artifacts upon the local construction and negotiation of dependency across age, gender and class might well be studied as an ongoing process. At the moment and site of this research, such technobiological artifacts were of limited relevance to questions of local biology or local politics, and the following chapter turns to a narrative and set of practices of greater immediacy, those of the Bad Family.

Yet at this moment of enchantment, in which globalizing agents like the missionary physicians of Alzheimer's Disease International and multinational marketers of senility drugs proffer Alzheimer's as the answer to India's inevitably backward treatment of old people, the body of Alzheimer himself takes on unexpected and perhaps local forms. The Bangalore-based journal of the Indian Academy of Sciences, Current Science , devoted a 1992 issue to Alzheimer's disease, billing it as "an emerging issue for the developing countries."^[113] The articles included were a mix of review articles, clinical overviews, and recent research and in their relative comprehensiveness suggested that a different kind of Alzheimer's practice had replaced the "better brain" project. On the cover of the special issue was a photograph of Alzheimer, but not the usual head shot accompanying books and articles on the topic in the United States and Europe.^[114] The usual narrative of Alzheimer's life is one of tragedy, the template generated by Kraepelin's own essay on his junior colleague's various family losses and his own premature death. But the Alzheimer who may be coming to matter in Indian science and whose invocation promises to restore aging in India is envisioned differently here. In his inaugural appearance in India, the great pathologist is pictured en famille , holding his son on his lap, seated next to his wife and daughter, and gazing through his ubiquitous monocle at their newborn baby.