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Chapter 12 - The Scientific and Lay Narratives

Published online by Cambridge University Press:  29 June 2020

Alberto Espay
Affiliation:
University of Cincinnati
Benjamin Stecher
Affiliation:
Educational Consultant and Healthcare Advocate
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Summary

An editorial perfectly timed as we approached the final work on this book was published in the October 2019 issue of Lancet Neurology. With the title, “Re-aligning scientific and lay narratives of Alzheimer’s disease,” several Alzheimer’s investigators pointed out a discrepancy between the narratives circulated among Alzheimer’s patient advocates and those in academic circles. The advocates’ narrative centers around the belief that each case of Alzheimer’s is its own unique disease; the scientific narrative, while acknowledging the heterogeneity, is based on a “theory of everything,” the overarching path to Alzheimer’s that can be generally applied to all cases.

That second narrative, in part because of the esteemed researchers that tell it, attracts the lion’s share of funding. It portrays neuroscience as being on the brink of treatments to slow down Alzheimer’s. All that is needed is larger, more resource-intensive studies into what is being done to address everyone’s Alzheimer’s disease.

Type
Chapter
Information
Brain Fables
The Hidden History of Neurodegenerative Diseases and a Blueprint to Conquer Them
, pp. 111 - 124
Publisher: Cambridge University Press
Print publication year: 2020

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