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Living with Alzheimer'sManaging Memory Loss, Identity, and Illness$
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Renée L. Beard

Print publication date: 2016

Print ISBN-13: 9781479800117

Published to NYU Press Scholarship Online: January 2017

DOI: 10.18574/nyu/9781479800117.001.0001

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Advocating Alzheimer’s

Advocating Alzheimer’s

Biomedical Structures and Social Movements

(p.168) 7 Advocating Alzheimer’s
Living with Alzheimer's

Renée L. Beard

NYU Press

Based on observation at academic conferences and interviews with staff at the American Alzheimer’s Association, this chapter is an organizational analysis examining the inherent tensions of serving both patient and caregiver populations, the dilemma of encouraging philanthropy without exploiting constituents, and the one-sided portrayal of those with the condition. Focusing on organizational dynamics and what Erving Goffman called “framing contests,” the Association’s founding by bench scientists and caregivers is shown to place them in a tenuous position for incorporating the relatively new constituency of persons with early-stage Alzheimer’s into an organization based on biomedical principles too often assuming their incompetence. Tracing the steps leading to the appointment of the Association’s first board member with dementia and the establishment of Dementia Alliance International elucidates the challenge of trying to serve competing interests and the unique role of activism played by persons with young-onset AD and scholars within the academy itself.

Keywords:   organizational dynamics, Erving Goffman, Dementia Alliance International, activism, biomedical principles, early-stage Alzheimer’s, framing contests, organizational analysis, new constituency

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