Scientists react to the news that their genes put them at high risk for Alzheimer’s disease: NPR
People who inherit two copies of a variant of common genes are very likely to develop Alzheimer’s disease. Learn that you are one of those people can be difficult. Three scientists are in this situation.
Mary Louise Kelly, host:
People who inherit two copies of a variant of common genes are very likely to develop Alzheimer’s disease. Jon Hamilton of NPR spoke to three scientists who were tested and who are struggling with the results.
Jon Hamilton, byline: The variant of the gene is called APOE4. Inheriting a single copy can triple your risk for Alzheimer’s disease. Inherited two copies – one of each parent – means that you will probably have symptoms before the age of 85. This very high risk status applies to less than 3% of people in the United States, one of them is in June, a doctoral biochemist who discovered an online genetic test service.
June: I was so in distress and I – I never felt so frightened in my life.
Hamilton: June asked to use only her first name. She fears that making her public genetic status can affect her job or health insurance. At the beginning, June spent hours online reading university articles on Alzheimer’s disease and genetics. She then discovered online communities made up of people like her.
June: I have not only found useful information, but I knotted deep friendships.
Hamilton: June learned the brain advantages of a Mediterranean diet, exercise, sleep and stress reduction. And his online communities led him to a research project at the University of California San Diego. June signed up for a four -month study that made him play an intense virtual reality game.
June: you are cycling and you go through unknown land where you have to make turns. So you really have to use your entire cognitive reserve.
Hamilton: June says that the study also involved a series of MRI scans and cognitive tests.
June: I was not only able to look at my brain in action, but I was able to develop really effective learning and conservation strategies of my memory.
Hamilton: Many mental and physical activities could delay the symptoms of Alzheimer’s symptoms, but David Watson, a neuropsychologist who heads the Alzheimer’s research and treatment center in Florida, says that it is not enough for people with the APOE4 variant.
David Watson: All these things that we can do preventively, they will be useful. But will they replace genetics? No, they are not unfortunately.
Hamilton: Watson, who was in the mid -1950s, learned that he was carrying two copies of the Apoe4 gene about 25 years ago. He started directing clinical Alzheimer’s drug trials in the hope of finding one that could protect his brain. This work helped obtain two drugs on the market. Unfortunately, Watson is not a good candidate for one or the other. The drugs are both monoclonal antibodies that eliminate sticky brain amyloid plates. Watson says in people with his genetic profile, which often swells or bleeds the brain.
Watson: If someone is APOE4 / 4, he should probably not make a monoclonal antibody targeting the amyloid or certainly, you know, very cautiously with additional advice.
Hamilton: So Watson focused on an experimental medication which is specifically for people who are APOE4 / 4 – or homozygous. He says that the pill that has been tested at its center is designed to interrupt the process that leads to amyloid plates.
Watson: And this particular compound, which has been targeted and designed and sought only on 4/4 homozygous patients, has actually shown remarkable results.
Hamilton: The drug, manufactured by Alzheon, did not cause swelling or bleeding, and he prevented the brain areas associated with memory from shrinking the way they usually do in Alzheimer’s. But the drug has not clearly shown that it could slow down cognitive decline in people who already had symptoms of Alzheimer’s. Despite this, researchers think it could still help a person without symptoms. Someone like Wendy Nelson.
Wendy Nelson: I would absolutely take the Alzheon pill tomorrow if I could have access.
Hamilton: Nelson is a doctoral student in the biotechnological industry which carries two copies of the APOE4 variant.
Nelson: I am a triathlete. I just made the PEMI loop in the white mountains this weekend. I eat healthy.
Hamilton: Nelson is 54 years old and has three daughters who wear a single copy of the APOE4 gene. She therefore jumped at the opportunity to meet officials of the FDA who supervise the Alzheimer’s drug.
Nelson: A few weeks ago, I provided my seven minutes of testimony to the FDA, which was my plea for more options because I don’t feel like I have something there right now.
Hamilton: June, the biochemist, also testified. She says experience was stimulating.
June: I realize that being homozygous apoe4 / 4 is not the end of the world. There are so many things we can do.
Hamilton: like making lifestyle changes, finding the community and pushing the government to continue to finance the search for Alzheimer’s.
Jon Hamilton, NPR News.
(Soundbite of Tim Cappello Song, “I Believe Still”)
Copyright © 2025 NPR. All rights reserved. Visit the pages of use of the conditions of use of our website on www.npr.org for more information.
The accuracy and availability of NPR transcriptions may vary. The transcription text can be revised to correct errors or match audio updates. Audio on npr.org can be published after its original broadcast or publication. The file authorizing the NPR programming is the audio recording.
