Name: Losing a Loved One to Early Onset Alzheimer's
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This woman was 59 years old when she lost her battle with Alzheimer’s. Watch her husband and son share her story.

See how Alzheimer's develops and spreads throughout the brain.

This woman was 59 years old when she lost her battle with Alzheimer’s. Watch her husband and son share her story.

Losing a Loved One to Early Onset Alzheimer's

See how Alzheimer's develops and spreads throughout the brain.

Body & Brain

Losing a Loved One to Early Onset Alzheimer'sPublished: September 2, 2020AJ Fillo: Her name was Heidi—I just called her mom. She was talkative, brilliant, creative… I don’t think I’m ever going to forget how special she could make you feel, just by talking to you. We started noticing more and more Mom would have trouble remembering names. She’d lose the thread of a conversation. When you see someone that’s able to exercise and take care of their family, and they’re not even 50, you don’t think “Alzheimer’s.”Onscreen: At age 51, Heidi was diagnosed with early onset Alzheimer’s… an uncommon form of the disease causing catastrophic loss of cognitive ability before age 65.Kevin Fillo: People call it the long goodbye. I don't know how much of a goodbye it is. All of the hopes and dreams of the future just kind of get destroyed, evaporate. It is a long, gradual, painful descent into nothingness. I was not prepared for that.Onscreen: Early onset Alzheimer’s makes up about 5% of diagnoses. Regardless of age, Alzheimer’s is characterized by the buildup of two proteins in the brain.Reisa Sperling: Alzheimer’s disease requires both the presence of amyloid plaques and tangles which are made of tau. What we can see is once there’s a lot of amyloid that tau really begins to spread, like wildfire.Onscreen: In healthy brain cells, tau is an important protein, helping maintain structure and function. Years or even decades before symptoms appear in Alzheimer’s patients, amyloid plaques and tau tangles build up in the brain. Tau tangles kill neurons from within, triggering neuroinflammation and, as a result, widespread neuron destruction. It’s at this stage that patients begin to exhibit recognizable symptoms, such as memory loss.Sperling: These tau tangles spread faster in younger people, and that may be because they have more working nerve cells.Onscreen: Alzheimer’s destroys the network in the brain that governs your sense of self. The plaques and tangles build up over time, with the tangles first appearing in the entorhinal cortex and the hippocampus… which affects spatial learning and short-term memory.AJ Fillo: As mom’s Alzheimer’s progressed, at first she forgot names and she forgot how to get around…Onscreen: Over time, plaques and tangles spread throughout the brain and eventually reach the frontal cortex, affecting long-term memory.Kevin Fillo: If you started humming a song or put something recognizable on the radio, you could see that it was reaching some core part of her. She was always empowered by music. The Alzheimer's center singing group had Heidi singing operatic solos when she couldn't add or subtract or even write her own name.Onscreen: Eventually, brain cells in many parts of the cortex are seriously damaged, and the brain shrinks dramatically.AJ Fillo: As it got worse, she forgot how to talk, she forgot how to sing, she forgot how to feed herself, and to walk. She forgot how to smile, and then… and then she forgot how to survive.Onscreen: Heidi died in her sleep on June 12, 2019 at the age of 58. After her death, her family donated her brain for research. Scientists study brain tissue to try to understand how plaques and tangles form… and how to identify them in living patients.Rudolph Tanzi: Right now we have brain imaging that allows you to see if you have plaques that are at an alarmingly high level. Beyond brain imaging, which is quite expensive, a blood test for whether you have plaque in your brain is around the corner.Onscreen: The next step is for the FDA to approve such a test for general use. In early 2021, Tanzi and his colleagues hope to launch clinical trials of a new drug that fights Alzheimer’s in its initial stages.As for Heidi, her family recently received the results of her autopsy. Alzheimer’s was indeed the culprit, but what caused the disease remains unclear.AJ Fillo: She was always adamant that you should sing the song the way you want to. And she did.

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Losing a Loved One to Early Onset Alzheimer's

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