This chapter explores the entangled histories of Down syndrome and
Alzheimer’s disease, advocacy endeavors, parental experimentation with cognitive
therapies, and uneasy relationships between parents, medicine, and science. The goal is
to raise questions to elicit discussion for parent advocates, who may find themselves at
the crossroads of new possibilities for people with Down syndrome. It is drawn from
anthropological ethnographic research centered on social advocacy for both Down
syndrome and Alzheimer’s disease, conducted from 2006-2010. The author also utilizes
historical analysis to enhance understanding of contemporary concerns, and to
illuminate the unique position of parents in the treatment of their young and adult
children with Down syndrome.
Keywords: Advocacy, Alzheimer’s disease, Down syndrome, medicalization,
social history.