Concepts of Alzheimer Disease: Biological, Clinical, and Cultural Perspectives

9. Aging, Culture, and the Framing of Alzheimer Disease

9 Aging, Culture, and the Framing of Alzheimer Disease Martha Holstein Alzheimer disease (AD) has assumed almost mythic proportions in American society. This disease affects over four million people and has stimulated the expenditure of substantial public and private resources in the search for the key to its complex and probably multiple etiologies, its threat to fundamental sources of human identity, and its affect on others in addition to the patient. In spite of these expenditures, AD is a refractory disorder that is unlikely to be ‘‘cured’’ any time in the near future. Instead, scientific investigators now have a more modest goal—to delay the onset of symptoms by five years. Sociologists, anthropologists, psychologists , and others are interested in how this disorder (or disorders) is perceived, how different perceptions shape responses to the patient, and how psychological factors contribute to symptom formation. This vast research enterprise and the enormous public consciousness about AD’s devastation are surprisingly recent. Senile Dementia of the Alzheimer type (SDAT) or Dementia of the Alzheimer Type (DAT), terms commonly employed to distinguish an Alzheimer-type dementia from other dementias, became firmly established as a disease category approximately twenty years ago. Before the mid-70s, most physicians considered AD, a disease that affected individuals in their forties and fifties and occasionally even younger, to be quite rare. Older people with symptoms and brain pathologies comparable to those of younger patients were diagnosed with senile dementia, senility, senile psychoses, or Aging, Culture, and Framing Alzheimer Disease 159 organic brain syndrome. This mixture of diagnostic labels revealed how poorly developed the science (or art) of differential diagnosis was with respect to mental conditions that affect older people. It also reflected the customary view that mental decline in old age is common and essentially untreatable. Today, neither senility as a diagnostic label nor the idea that mental decline may be an inevitable feature of growing old is acceptable. The dominant discourse about AD holds that dementia of the Alzheimer type (DAT) is a disease without age boundaries that is qualitatively and quantitatively different from ‘‘normal’’ aging—except that age represents the single most important risk factor for its onset. It seeks, in Gubrium’s (1986) words, ‘‘unity in diversity.’’ The causes of AD are located deep within our DNA. These transitions in the concept of AD graphically illustrate how negotiation processes establish that certain physical and/or mental conditions deserve the disease label—a decision that often cannot be singularly explained by scientific discovery. For example, while most physicians in the United States accepted AD as a diagnostic label by 1920, the relatively few recognized cases of AD lacked definitive neuropathological signs and commonly accepted behavioral symptoms. The familiar plaques and tangles appeared in other diseases and conditions; postmortem neuropathologic examination could rarely separate younger from older patients, although the brains of younger patients seemed to be more severely diseased. While this lack of specificity necessarily limited the definitiveness of conclusions about the exact nature of AD, it did not preclude investigators from deciding that AD was not senile dementia (SD). The few dissenting voices (Newton 1948; Neumann and Cohn 1953)—including that of Dr. Alzheimer in a 1911 paper—had no audience for many years. Thus, Drs. Fuller, Southard, and their contemporaries adopted the diagnostic label ‘‘Alzheimer disease,’’ tentatively proposed by the famed nosologist Emil Kraepelin to differentiate it from the familiar condition known as senile dementia. SD was too encumbered to meet the needs of the time. Its very name announced that it was a condition of old age. Conventional conceptions about disease and health were based on age norms. The belief that mental decline in old age is an expected part of an overall pattern of decline meant that what was clearly ‘‘abnormal’’ at 50 might be quite ‘‘normal’’ at 70. Thus, physicians were uncertain if SD was a disease or ‘‘normal,’’ though perhaps extreme, physiological aging. Assumptions, beliefs, and uncertainties about involutionary processes and the accompanying mental and physical changes were cap- 160 Martha Holstein tured in nosology and created a relatively closed conceptual account. This system left little room for younger patients like Frau Auguste D., Dr. Alzheimer’s 51-year-old patient, whose age and condition initiated the flurry of attention. Rarely requiring articulation, these views were embedded in medical history, education, and popular attitudes. They filtered perceptions and influenced even the most careful...