What did you inherit from your parents? We all have features we can trace back: piercing eyes from Mum, curly hair from Dad, a love of music from Granny and a lack of rhythm from Grandad.
I can look at my face and divvy it up along my family tree. It is the bits we like least that we spot first — the bump in my nose, moles on my neck — but the most jarring inheritance, and the one I can’t see in the mirror, is the Alzheimer’s gene I got from each parent.
That is not its official name, of course. It is ApoE4, a mutation of the ApoE gene, which everyone has two copies of. About 25 per cent of the population have one ApoE4 allele, or variant, making them twice as likely to develop Alzheimer’s as those without.
However, only 2 per cent of people inherit a double dose like me. This means I am up to 15 times more likely to get Alzheimer’s, with a 60 per cent chance I’ll have it by the age of 85.
Flora Gill, 28, (pictured) shared the shock of discovering that she has a 60 per cent chance of developing Alzheimer’s
When the odds are less than 50-50, humans are good at assuming they won’t be the ones affected. It is what allows so many of us to carry on smoking or eating fatty foods worry-free — we count on being in the lucky majority. But with a risk of 60 per cent, it is hard not to be haunted by it.
The genetic results were not something I went in search of. I took a DNA test because I was curious to peer into my family’s past. When I was given an offer to upgrade and ‘explore my DNA’, I took the promotion without much thought. It sounded enticing, a behind-the-scenes look at my body.
I don’t have any grandparents left. I miss my two grandmas and one grandfather deeply, but I never met my other grandad. I spoke to him, ate meals with him, but he didn’t know who I was because of Alzheimer’s. I was a stranger to him, and so he could never really be a grandad to me. To be honest, I hated visiting him.
When people develop Alzheimer’s, parts of their personality can change: they may become mean or violent or sad in a way they never were before. Fortunately for Grandad, he always seemed happy; his sense of humour grew as his memories faded.
Dad would tell him stories of the memories he should have had, while he smiled as if hearing them for the first time. Sometimes, Grandad would speak to me, but I could never follow his train of thought, as if half the conversation was happening in a world I wasn’t privy to. The idea of following this path always scared me.
Flora (pictured with her father A. A. Gill) hopes for science to find a cure for Alzheimer’s, as online support groups continue to pop up for those wanting to share their ‘diagnoses’
When I saw my DNA results, I burst into tears. The duplicitous gene was hidden inside me. I could feel it travelling through my blood.
The Alzheimer’s Society recommends avoiding these genetic tests because of their emotional toll. It points out that many people with copies of the high-risk gene may never get Alzheimer’s, while those without them may well develop the condition.
James Pickett, the charity’s head of research, says: ‘There has been little research into the consequences of people finding out about their genetic risk of dementia. It’s a highly personal decision, but could cause great anxiety without the correct support. The first port of call should be a GP, not a genetic test.’
It turns out I have a 60% chance of Alzheimer’s by age 85’
Worldwide, more than 26 million people have taken a consumer DNA test, with the number predicted to rise to 100 million in two years. Many are blindsided when they receive painful news, and there’s no help currently provided to those who do.
Dementia is already the country’s biggest killer, having overtaken heart disease in 2016, and the number of sufferers will grow as we live longer. It therefore seems reasonable to assume that more attention will be given to those living with the condition. Yet, often, that does not seem to be the case, partly because those affected are not the photogenic poster kids for whom we run marathons and text donations, but the country’s elderly, whom we so often hide away and neglect.
Last week, the U.S. company Biogen announced it was seeking regulatory approval for Aducanumab, a new drug heralded as a potentially ‘transformative discovery’ for patients. If approved, it would be the first drug to actually slow the onset of Alzheimer’s.
Flora who is the daughter of Amber Rudd (pictured) spoke to Anna, 28, who claims to be constantly reminded of her chances of getting Alzheimer’s
As someone relatively young — I’m 28 — my best hope lies with the scientists searching for a cure.
For now, in lieu of counselling, online support groups have sprung up for people who wish to share their ‘diagnoses’.
Members discuss what they can do to rebalance the odds in their favour, and swap information on supplements they take, food groups they avoid and routines they have adopted.
Some theories revolve around the Nigeria paradox — citizens of the African country have a high prevalence of the ApoE4 mutation, and yet some of the lowest Alzheimer’s rates, suggesting lifestyle can affect your prognosis.
Anna, 28, spoke about how the test affected her. ‘It’s been months now, and every time I forget a piece of information, I’m reminded of it,’ she said. ‘I literally have to tell myself dozens of times a day to enjoy the present.’
Brian, 70, finds himself offering comfort to others, sharing his mother’s advice to ‘think on the bright side’. He doesn’t regret knowing the risks he faces and recommends discovering all you can about your ‘genetic deck of cards’.
Following Brian’s suggestion, I tried to view my results as a chance to control my future. In terms of preparing for the worst, the only thing I could think of that would make having Alzheimer’s more bearable would be having loving, kind people to care for me.
When it comes to prevention, people recommend keeping an active mind by learning a language or doing crosswords.
Flora (pictured) revealed she’s trying to live life a little more healthily and wants her life to be an epic story to listen to if she forgets her memories
But the most effective course of action is generally agreed: don’t smoke, eat well, exercise. Pretty much the things doctors tell us to do anyway.
After my father, the food critic Adrian Gill, watched his own father slowly being taken by the disease, he became an ambassador for the Alzheimer’s Society. But he didn’t have time to develop the condition — he died of cancer.
Dad didn’t have time to develop the condition — he died of cancer
Dad never had a genetic test, but he still worried about developing the condition and, when I think about this, I realise how silly and unfounded my own fears are.
Myriad things can kill you, and reaching the advanced age when Alzheimer’s strikes is a privileged fear. Not everyone is lucky enough to live so long.
Thanks to scientific developments, current fears could be allayed long before you reach old age.
But there’s something else we must remember, too. Genetic testing may confront us with odds we don’t like, but it also serves as a reminder that we should pay far more attention to those already trapped by this terrible disease.
And perhaps now I’ll try to live a little more healthily — but not too healthily. After all, if I’m going to forget all my memories and hear my life recounted back to me by familiar strangers, I’d better make it an epic story to listen to.
Words: © The Sunday Times / News Licensing