A Different Way to Think About Medicine’s Most Stubborn Enigma

Rethinking dementia

Excerpt: "It took 14 men to restrain José Arcadio Buendía at the height of his delirium, and 20 more to drag and tie him to a chestnut tree. The patriarch of Gabriel García Márquez’s One Hundred Years of Solitude would remain tethered there until his death, “discolored by sun and rain” as he sank into an “abyss of unawareness.”

Decades after the publication of the classic Colombian novel, Francisco Piedrahita came across similar scenes while growing up in the country’s mountainous Antioquia region. Walking through his native hamlet of Canoas, he glimpsed neighbors who seemed disoriented or couldn’t leave their beds. Once, he saw a man tied to furniture with a rope around his waist. “It’s an illness that people get,” Piedrahita’s mother explained, “and you’ll come to understand it one day.”

She was right. Piedrahita watched his grandmother die of it. Other grandparents, aunts, and uncles followed. Piedrahita eventually became a neurology nurse, caring for families, including his own, who were marked by a rare genetic mutation linked to early-onset Alzheimer’s disease.

His story—part clinical, part familial—forms the core of Valley of Forgetting, Jennie Erin Smith’s book on memory, medicine, and hereditary fate in rural Colombia. She follows researchers who, over four decades, have studied the paisa mutation—a gene passed down from a single common ancestor—which causes the illness in nearly everyone who inherits it. In Antioquia, scientists have identified between 1,000 and 1,800 carriers of this particular gene, constituting one of the largest known clusters of familial cases on Earth.

Smith, a science journalist, also tells the stories of some members of the 6,000-person clan who participate in research trials, donate loved ones’ brains, and care for one another while bracing for their turn.

Dementia is one of the modern world’s most dreaded maladies—only in part because we see it more as people live longer. In an era when individual identity and self-expression are often held paramount, the condition threatens to erase the self entirely. Smith’s book is a detailed chronicle of the families and scientists who are drawn together by one mutation, but it isn’t just a grim catalogue of familial illness.

Through the characters she speaks with over six years, Smith suggests that forgetting might be more than just an existential loss; it might also be a chance to explore other forms of humanity that are grounded in feeling, presence, or touch.