In 2017, 23andMe began offering upcharged “Health Predisposition Reports,” including a test for the probability of late-onset Alzheimer’s. A lot of people, who maybe weren’t looking for anything more than to fact-check their family lineage, took that test and suddenly found out they carried two copies of the gene variant APOE4. As anybody who watched Chris Hemsworth in the National Geographic docuseries Limitless (in which he revealed he is a carrier) knows, this puts you at a very high risk for developing Alzheimer’s. But what do you do with that knowledge? It can feel more like being strapped to a ticking cognitive time bomb than something you can realistically mitigate, since there is no proven way to stave off Alzheimer’s. In Facebook groups and Reddit forums, APOE4/4’s, as they call themselves, share information (does exercise help? How about cutting out carbs? Fish oil, maybe?) and try to understand the limits of what they can control in their lives and their brains. In this story, Amelia Schonbek had humane, wide-ranging conversations with ten people who found out they’re very likely to experience mental decline and have had to learn to live with knowing that. |
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