A 43-Year-Old Woman Shares Her Life After Learning She Inherited a Dementia Gene

Laura Sides recently shared her personal story with Dr Sian Williams, host of the BBC Radio 4 podcast Life Changing. Sides is living with the knowledge that she inherited a rare genetic form of early onset dementia, a condition that affected her father in his 40s. Her experience highlights the complex emotional and practical decisions faced by those who choose to undergo predictive genetic testing for hereditary illnesses.

Sides grew up feeling a strong connection to her father, whom she described as a devoted general practitioner. When his Alzheimer's symptoms worsened, she left university to provide care for him. She recalled spending quality time together, including trips to a lighthouse and simple pleasures like playing music while bathing him. It was during a hospital visit for her father that a doctor informed Sides she had a 50 percent chance of developing the same condition, known as the London variant.

At the time, Sides felt the news was like a toss of a coin and pushed the information deep down as she focused on her father's care. He passed away in 2009, one year after her mother died. Following these losses, Sides felt an overwhelming urge to leave her home in the UK. She booked a solo trip around the world and eventually settled in Melbourne, Australia. It was not until 2013, while living abroad, that the thought of inheriting her father's condition began to weigh heavily on her mind, prompting her to see a specialist.

The specialist explained that a test could determine with 99.999 percent certainty whether she would inherit the early onset dementia. If positive, her expected age of decline was between 46 and 48. Initially, Sides felt she was not ready for such definitive knowledge. However, as she entered her 30s, the desire to know grew stronger. She underwent six months of genetic counselling, a process designed to help patients process the potential impact of their fate.

After waiting six weeks for the results, Sides went into the appointment alone, having booked lunch with a friend for afterward. She requested a direct answer and was told the news was not good. She had inherited the gene. Sides described the moment as a white blurry noise, and while her friend burst into tears upon meeting her outside, Sides remained calm. They enjoyed their lunch, and she did not fully realize the weight of the diagnosis until later.

In the weeks that followed, Sides felt angry and confused about how to live with the knowledge. The situation prompted her to consider moving back to the UK, especially after her sister became pregnant. Despite this, she continued her travels and participated in medical trials both before and after her diagnosis. She found the involvement to be a positive aspect of navigating a negative situation.

Now 43 years old, Sides is three years away from the age doctors predicted she might begin to notice symptoms. She notes that while she waits for the decline to start, it does not keep her awake at night. She is grateful for the people in her life, though she admits that meeting new people can be challenging. She often questions when and how much to share her diagnosis with others, noting that relationships sometimes end after she reveals the news.

Sides has been proven wrong in her assumption that the diagnosis would make her unlovable. She finds reassurance and joy in the relationships that have endured. She also reflects on her previous belief that she would become a mother. While she had always assumed she would be good at parenting, she now feels it would not be fair to have children with this condition. This realization has been difficult but necessary.

Her approach to life has shifted toward appreciating simple pleasures. She is no longer focused on huge aspirations like visiting distant landmarks. Instead, she values time with the people she adores and enjoys being in nature, particularly submerged in water. She believes that the little things are the big things. Sides hopes for a wonderful few years ahead, which she plans to spend enjoying her favorite things, such as drinking champagne and eating oysters.

For those affected by dementia, the BBC Action Line offers support resources. Sides' story serves as a poignant reminder of the profound impact that genetic knowledge can have on an individual's perspective on time, relationships, and happiness.