Gene test reveals early dementia risk

Laura Sides inherited the gene for a rare form of early onset dementia.

Her father, a general practitioner, was diagnosed with the condition in his 40s. The specific type is known as the London variant. When a doctor told Laura she had a 50 percent chance of developing the same illness, she described the odds as a toss of a coin. She pushed the worry aside while she cared for her father during his final years.

Her father died in 2009, one year after her mother passed away. The loss prompted Laura to leave the United Kingdom. She booked a solo trip around the world and eventually settled in Melbourne, Australia. In 2013, she saw a specialist there who discussed a genetic test. The specialist explained that the test could determine inheritance with 99.999 percent certainty. If positive, the expected age of decline would be between 46 and 48.

Laura underwent six months of genetic counseling before taking the test. She waited six weeks for the results. When the day arrived, she went into the appointment alone. She asked the doctors to cut straight to the point. They told her she had inherited the gene. Laura described the moment as a white blurry noise. She left the room, where a friend burst into tears, but Laura felt no immediate reaction. They went to lunch together. The reality of the diagnosis hit her later, bringing feelings of anger and confusion about how to live with the knowledge.

Life continues with adjustments. Laura is now 43, three years away from the predicted start of symptoms. She participates in medical trials, which she finds positive. She returns to the UK when her sister is pregnant. She says it does not make sense to live on the other side of the world when a sibling is having a baby. Meeting new people remains difficult because she must decide when to share her diagnosis. She has found that some relationships end after she tells them, but she has also been loved despite the condition.

Sides says she always assumed she would be a mother. She now believes it would not be fair to have children. She focuses on things that make her happy, such as nature and water. She wants time with the people she adores. She hopes to enjoy her remaining years drinking champagne and eating oysters.