PIEDAD’S HOUSE sits above the cemetery in Girardota, Colombia, just north of Medellín. From her front porch, the view gives way to green hills, each home to hamlets with sugarcane plots and tile-roofed houses tucked in among the trees. One of these hillside hamlets is where Piedad and her 11 siblings grew up. Their father, Horacio, worked in cane fields and sugar mills, and their mother sold fruit from her orchard; their grandmother made pots from clay she dug across the river. When earthquakes destroyed their home in 1979, the family moved into town and left rural life behind.

Horacio showed the first symptoms of dementia soon afterward. He ignored the food he was served and got lost returning from church. He grew aggressive and delusional, and Piedad would return from her job at a sugar-packing plant to help bathe him, holding back tears as he kicked and punched. Horacio died in 1984 from what his doctors called senile dementia, the same disease that killed his father and three of his siblings.

By the early 2000s, four of Piedad’s own siblings, then in their 40s and 50s, were showing signs of dementia. A local doctor referred them to a group of investigators in Medellín who studied families with a unique genetic mutation that causes early-onset Alzheimer’s disease. Nicknamed the Paisa mutation after the people of Colombia’s Antioquia region, who call themselves paisas, it occurred on a gene, called presenilin-1, implicated in familial Alzheimer’s. The families affected tended to be white farmers living in remote mountain towns that felt untouched by time.

…continue reading ‘In a Colombian Family’s Dementia, a Journey Through Race and History’

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