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Gene Test Confirms Early Dementia Risk

Laura Sides waited until age 39 to learn she carries a mutation predicting symptoms by 46.

By Marta Gray ·

Illustration for: Gene Test Confirms Early Dementia Risk
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Laura Sides stood in a Melbourne clinic in 2019 and received a result that fixed her biological clock. Doctors confirmed she inherited a gene for early onset Alzheimer's disease. The specialist had told her in 2013 that the test would determine her fate with 99.999% certainty. If positive, her cognitive decline would likely begin between ages 46 and 48.

The uncertainty had haunted her since childhood. Her father, a general practitioner, was diagnosed with the London variant of the disease in his 40s. Laura dropped out of university to care for him, a period she describes as a time of deep connection. She remembers running baths for him and playing music while he relaxed. After his death in 2009, just a year after her mother passed, she felt an overwhelming urge to escape. She booked a solo trip around the world and settled in Australia.

For years, she avoided the medical question. She told a specialist in 2013 that she was not ready to know. As she entered her 30s, the pressure to know grew. She underwent six months of genetic counseling before taking the test. The process required a six-week wait for the results. On the day of the appointment, she felt extremely nervous. She went into the consultation room alone, skipping a planned lunch with a friend to face the news first.

"Let's cut straight to it," she said to the clinicians. They delivered the bad news. "We're really sorry, it's not good news, and you have inherited the gene." Sides describes the moment as a white blurry noise. She walked out to her waiting friend, who burst into tears. Sides remained calm. They ate lunch together, and she did not fully register the diagnosis until later.

The reaction shifted from numbness to anger. She felt the situation was unjust and confused about how to live with the knowledge. She considered returning to the United Kingdom when her sister became pregnant, feeling that living on the other side of the world was illogical while her sibling had a baby. Yet, she continued her travels and joined medical trials. She viewed her participation in research as a positive step emerging from a negative circumstance.

At 43, Sides is three years away from the predicted onset of symptoms. She waits for a sign but says the knowledge does not keep her awake at night. The diagnosis has complicated her social life. She struggles with when to tell new people about her condition. More often than not, relationships end after she shares the news. Yet, she has found reassurance in those who stay. She has been proven wrong about the limits of her love life.

Sides had always assumed she would become a mother. She now views that plan as unfair to a child who might inherit the gene. She has chosen not to have children. Her daily life focuses on small pleasures rather than grand aspirations. She spends time in nature and loves being submerged in water. She values the people who make her feel safe.

She hopes for a few years of drinking champagne and eating oysters. These are two of her favorite things. She finds joy in the simple moments that remain before the predicted decline begins. The diagnosis has reshaped her priorities, moving them from future goals to present connections.

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