Tuesday, 19 August 2003
This presentation is part of : Alzheimer's Disease and MCI: Cultural and Ethical Issues

S040-003 Building a Disease: the Case of AD

Atwood D. Gaines, Anthropology, Bioethics, Psychiatry and Nursing, Anthropology, Bioethics, Psychiatry and Nursing, Case Western Reserve University, Cleveland, OH, USA

Objective: The present paper considers ‘advances’ in dementia study as a basis for questioning the categorical status of AD as a specific disease. Recent research suggestive of this point includes what amounts to a scientific ‘changing of the subject,’ as research “progresses” to focus on Mild Cognitive Impairment (MCI). As well, the impending decline of genetic explanations bodes ill for the construction of AD as “disease.” One now sees an increasing vagueness in etiological hypotheses rather than a narrowing and a retreat from beliefs that an “answer”, i.e., a genetic answer, will be found. The proliferation of drugs, the loss of confidence in genetic explanations and the move to proteomics all suggest AD is becoming less an identifiable disease than a cultural complex coupled to normal biological and neurological variations in aging. Design: This presentation employs retrospective and prospective views of scientific developments on AD and MCI in the literature and observational work with international scientists over the last 6 years. Materials and Methods: Three methods are used; historical, cross-cultural and ethnographic (participant observation). Each contributes to the overall goal of understanding the construction of AD as a disease and an understanding of the meaning of newer developments in research and thinking about AD and MCI. Results: Since the original findings by Alois Alzheimer at the beginning of the last century, Alzheimer Disease (AD), became a focal medical concern only in the last third of the 20th century. Spurred by popular demand for research into a condition that causes enormous suffering for individuals and their caregivers, and by the biologization of psychiatric theory, Biomedicine constructed AD as the primary cause. Pharmaceutical interests now also have arisen as important for the construction of disorders, sometimes before they are identified by medicine. MCI’s formulation, in part, appears motivated by pharmaceutical interests as well as a changing of the research subject from AD where progress at etiological clarification is increasingly problematic. Conclusion: The social concern and mobilization against AD as a tragic and devastating disease derives from its cultural construction as a threat to the self’s most valued attributes in the context of Northern European Protestant culture, that is, cognitive functioning/memory. This construction also now implicates increasingly narrow medical notions of normality and, hence, a widening range of behaviors that may require care (thereby increasing burdens) and pharmaceutical interventions (increasing profits). “Discoveries” about the cause(s) of AD continue to proliferate and to cloud understanding of the cause and nature of AD as a unified disease. A proliferation of drugs with different loci of action also reflects the growing lack of clarity about AD as a unitary disease. The paper concludes with a consideration of the ethical issues raised by these emerging trends, including the role of profit in disease construction and the problems of “early diagnosis” for conditions that are uncertain (e.g., MCI) and cannot be efficaciously treated.

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