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.