Medical ideology as a double-edged sword: the politics of cure and care in the making of Alzheimer's disease

Abstract

This paper builds on our prior work concerning the emergence of Alzheimer's disease (AD) as a major social and health concern. Our study was conducted in two phases (1985-1987 and 2009-2011). We examined the historical evolution of the concept of AD and the emergence of the AD social movement in the U. S. Sources include interviews with movement leaders and scientists, historical documents of the Alzheimer's Association, Congressional records, and published literature. We identified recurrent themes and salient issues motivating those in the movement, its barriers and facilitators, and the roles of government and NGOs in the creation of an organizational structure to maintain it. The characterization of AD as a leading cause of death among the elderly was crucial to sustaining the movement, but also operated as a "double edged sword". By construing "senility" as a treatable, even curable biomedical entity, the movement substantively contributed to the notion of an impending "crisis" of the aging population to be avoided at all costs, compounding the effect of conservative federal policies that emphasized the treatment or cure of AD, and less so the long-term care service needs of sufferers and caregivers that had given rise to the movement. We also discuss how the continuing hegemony of the medical model establishes a race against the demographic clock, pitting advances in biomedical research against the needs of an aging population. We propose that alternative framings and sources of legitimization are critical to address the needs and preserve the humanity of people living with AD and their caregivers.