Our Mum Succumbed to Young-Onset Cognitive Decline – I Had to Discover Whether I Will Too.

Liv Heeney

At the age of 28, Liv Heeney learned she carried a mutated gene that would probably lead to her to develop a uncommon type of dementia in her younger years.

Young-onset frontotemporal dementia (FTD) had already impacted 13 members in her family, including her mother Bernie, who succumbed to the disease when she was 54.

Liv, based in Birmingham, is living with the truth that she will probably develop the illness in her 40s and die in her fifties – but she's leveraging the knowledge to make certain any children she has are free from the gene.

It's also given her the chance to prepare for a future with children, but she stated: "It's a fine line to walk. I don't want to look too far into the future that I'm missing out on now."

Understanding Frontotemporal Dementia

FTD is a form of dementia that leads to problems with behaviour, language and recall, with most cases occurring in individuals aged 45 to 65.

Additionally, it is hereditary, with approximately 12.5% of those diagnosed with the condition having a familial connection.

Liv Heeney

Growing up, she was aware her grandfather and multiple siblings had lost their lives prematurely to the disease before she was born, and she was a young adult when she began observing her mother's unusual behavior.

"She no longer appeared like herself, she was skipping work which was highly out of character [as] she adored her job. She would [also] make inappropriate comments," she explained.

"I think the big initial indicator was when my grandfather, my father's dad died [in 2012] and she showed little an reaction to it."

"She kind of shared with people that she was worried that what was happening to her dad was taking place to her," she said.

A Gradual Deterioration

Bernie was found to have dementia shortly after her fiftieth birthday in 2013, with her husband becoming her primary carer.

Liv said her mum soon lost the ability for the ability to talk, as well as basic skills such as washing herself, walking, consuming food and taking fluids.

"When she was identified, I believe she was largely unaware what was going on."

In 2017, Bernie died at home while her daughter, who was just 21, was in a cab hurrying to catch a last-minute train home from college in London.

Liv Heeney

After years of deliberating, Liv decided to start the procedure of DNA analysis at the start of last year, hoping to discovering if she had inherited the identical gene that caused her mother's cognitive decline.

After an eight-month process from the initial conversation, confirmation was provided by a straightforward blood test which took about five minutes, she said.

"I've always assumed that I had the gene, that the same would occur to me... For some reason, it was simply a intuition," Liv, of her local area, continued.

That August that year, she learned she had tested positive for the faulty MAPT gene.

"Me and my partner her partner attended the appointment, and prior to sitting on the seat, she [the geneticist] immediately stated 'I'm really sorry, we didn't get the result we wanted'."

She added the confirmation was "difficult to put into words" but it "wasn't really a surprise."

Liv Heeney

In most cases in their 20s, the possibility of passing away prematurely is not an issue they typically consider.

However, for her, who now works as a designer in the city, the disease is a matter she contemplates daily.

The health of potential offspring was a primary motivator Liv – who is in a relationship of many years – desired to find out whether she carried the gene.

"I believed if I wanted to have a family, it was the responsible decision for me to take. That I needed to protect them from this," Liv explained.

Through IVF and genetic screening of embryos, she hopes to be able to guarantee future kids she has will be born without the faulty gene.

"If you find out you carry the gene, options exist to make sure that you don't pass it on now," she remarked.

Liv Heeney

'Unrelated to Aging'

She said a common misconception was that dementia primarily impacted older people.

"It's just not the case that [dementia] is a inevitable aspect of ageing, it's a disease, it's physical changes to your mind."

"It is an ailment similar to cancer and Aids, even like the pandemic – it's a physical thing in the human system," she affirmed.

She believes there ought to be more funding and research into frontotemporal dementia.

Despite her genetic result, Liv is resolved to live her life the way she has envisioned. Soon, she will be organizing a fundraising night in her hometown for a dementia research charity.

"Should I start a family today, I will have 15 years with them. If I become a parent in five years time, I will experience less time with them," she commented.

"I am aware of the truth of this, I understand what's coming."