Liv Heeney’s Struggle with Genetic Risk of Dementia

At just 28, Liv Heeney learned she carries a gene that may lead to early onset frontotemporal dementia (FTD), a rare but devastating condition. It’s not just a personal fear; the disease has already impacted 13 family members, including her mother, Bernie, who passed away at 54 due to the illness.

Liv, hailing from Birmingham, is faced with the unsettling knowledge that she might confront dementia in her 40s, potentially leading to her death in her 50s. Yet, she’s using this awareness proactively to shape her family’s future, ensuring any children she may have won’t inherit the faulty gene.

“I try to find a balance,” she reflects. “I don’t want to get so wrapped up in the future that I miss enjoying life right now.”

FTD generally presents as difficulties with behavior and language and is primarily diagnosed in individuals aged 45 to 65. It can be inherited, with one in eight cases having a genetic link.

From a young age, Liv was aware of her family’s struggle with dementia. Her grandfather and numerous siblings had succumbed to the illness before she was born, and during her teenage years, she began noticing significant changes in her mother’s behavior. “She seemed off—missing work and making odd comments,” Liv recalled during a talk with BBC Radio WM. The turning point, for Liv, was when her grandfather died in 2012, and her mother exhibited little emotional response.

A Slow Decline

Bernie was diagnosed with dementia just after turning 50 in 2013, with Liv’s father stepping in as her main caregiver. Unfortunately, Bernie quickly lost essential abilities — speaking, self-care, mobility — and by the time she received her diagnosis, she was largely unaware of her condition. 2017 brought tragedy for Liv, who was only 21 when her mother passed away at home while she was trying to reach her.

After much consideration, Liv began genetic testing at Birmingham Women’s Hospital in early 2024, aiming to learn whether she had inherited the gene linked to her mother’s condition. Following an eight-month process including a brief blood test, the result came back. On August 2 of that year, she was confirmed to carry the faulty MAPT gene. “Before I even sat down, the geneticist told me, ‘I’m really sorry, it’s not the result we wanted,’” Liv recounted, admitting the news wasn’t a complete shock to her.

Unlike many in their 20s, pondering life and mortality is a daily reality for Liv, now a designer in London. She felt compelled to understand her genetic risk, especially with her hopes of having children in the future. “I felt that if I wanted kids, I needed to be responsible,” she explained. With IVF and embryo testing, she hopes to have children free from this genetic burden. “There are options now to make sure you don’t pass it on,” she added.

Not Just an Aging Issue

Liv emphasizes that dementia is often misunderstood as just a part of aging—“it’s not; it’s a disease with tangible changes in the brain,” she insists. It is a serious condition that merits more attention and research, particularly FTD. Despite the hurdles posed by her diagnosis, Liv remains committed to enjoying her life. This weekend, she plans to hold a fundraising event in Birmingham for Alzheimer’s Research UK, motivated by her desire to make the most of the time she has.

“If I have kids now, I’ll have 15 years with them. Waiting five more years will mean less time,” she states with a blunt awareness of her reality. “I know what’s ahead.”