If you could find out if you had a gene that would cut your life short, would you?
This is the dilemma Laura Sides faced when she was offered a test for the rare form of early onset dementia that her dad was diagnosed with in his 40s.
Laura spoke to Dr Sian Williams, host of BBC Radio 4’s Life Changing podcast, about her decision to take the test and how it has shaped the rest of her life.
Growing up, Laura says she always felt close to her dad as they had a “similar nature”. He was a GP and “the most amazing doting father,” she says. When his Alzheimer’s symptoms became more severe, Laura dropped out of university to care for him.
“We did have a really lovely time,” she says, remembering trips to a lighthouse and collecting coasters. “I’d run him baths and just play music and pour jugs of hot water over his head and he loved it.”
It was at a hospital appointment with her dad when a doctor told Laura she had a 50/50 chance of developing the same type of early onset Alzheimer’s known as the “London variant”.
“All I could think was, that’s a toss of a coin,” she says. “I was still so involved with what was going on with him [her dad]. I just pushed it really, really deep down.”
Laura’s dad died in 2009, just a year after her mum had died.
“All of a sudden I got such an overwhelming urge to leave,” she says. So she booked a solo around-the-world trip, eventually settling in Melbourne, Australia.
It was there that thoughts of inheriting her dad’s condition “started creeping in” and she went to see a specialist in 2013.
He told her a test could determine with 99.999% certainty if she would inherit early onset dementia. If she had the gene, her expected age of decline would be 46 to 48, he said.
“I just thought, I’m not there yet. I don’t want to do that.”
As Laura entered her 30s she found herself thinking about the test more and more and decided she wanted to know. But first, she had to undergo six months of genetic counselling.
“There’s not many realms in life where you find out your fate and it can be very difficult information to process,” she says.
After a six-week wait for the test results to come through, the day finally arrived. Laura says she felt “extremely nervous”.
She had booked a table for lunch with a friend afterwards – but went into the appointment alone.
“I said, ‘Let’s cut straight to it.’ They said, ‘We’re really sorry, it’s not good news, and you have inherited the gene.'”
She remembers “almost a white blurry noise of just sitting there”.
“I came out of that room and my friend burst into hysterical tears.” But Laura didn’t react. “We went for our lunch and it was lovely. I don’t know if it’d sunk in.”
The reality hit later. “I was angry. I felt it was so unjust. I was just too confused at how I was meant to live now. How do you live with that knowledge?”
Laura began to feel a pull back home to the UK, especially as her sister was pregnant. “It doesn’t make sense… to live on the other side of the world when she’s going to have a baby.”
However, her around-the-world travels continued as she took part in medical trials before and after her diagnosis.
“It felt like such a positive to be involved in something out of such a negative situation.”
Laura is now 43 – three years away from the age doctors predicted she will begin to notice symptoms.
“I keep waiting for something to sort of hit home. I guess one day I’ll start declining but that doesn’t keep me up at night.”
She is “grateful and so lucky for the people in her life”. But meeting anyone new is hard.
“Do I tell them? Do I not tell them? At what point do I tell them?
“And more often than not, when I have told them, it ends.”
However she says she has been “proven wrong”.
“I have been shown I can be loved despite this. It fills my heart with reassurance and joy”.
Laura says she had always “naively assumed” she would be a mother.
“[Its] one of the very few things that I never questioned that I’d be good at and I wanted to do. That’s hard… but it doesn’t make sense to do it. It wouldn’t be fair.”
For Laura, life is now about tapping in to things that “make her happy”.
“It’s not about huge aspirations. It’s not like I want to see the Grand Canyon… I want to have time now around the people that I adore and make me feel safe.
“I love nature. I love being outside. I’m obsessed with being submerged in water. It sounds so corny, but…I believe it really is actually the little things are the big things.
“I hope I just have a wonderful few years in this world… drinking champagne and eating oysters – two of my favourite things.”
If you or someone you know has been affected by dementia, you can access support from the BBC Action Line.
