What it’s like to know you’ll soon have dementia

A matter of time

Jayde is 27 and has about a decade before dementia symptoms start

3rd November 2017

Dementia is a collection of symptoms, including memory loss and language difficulties, that affect the cognitive functions of the brain. It is most commonly caused by Alzheimer’s disease, a degenerative and debilitating condition caused by the build-up of abnormal proteins in the brain.

When Alzheimer’s disease develops in people under the age of 65, it is considered early-onset. In a few rare cases, the disease is caused by a genetic mutation that can be passed down through the family. For the affected families, there is the option to undergo a genetic test to determine whether they are living with the inherited gene mutation. There is currently no treatment to delay or prevent the onset of familial Alzheimer’s disease so the decision to get tested is often difficult, distressing and highly personal.

At the age of 27, Jayde Greene has recently discovered that she has inherited the rare gene and will develop Alzheimer’s disease in the future. Diagnosed only 4 months ago and set to see symptoms in her early 40s, she is determined to make a difference by participating in clinical trials, fundraising for Alzheimer’s Society UK and raising public awareness about early-onset dementia.

The Overtake speaks to Jayde about the devastating news and her inspiring efforts to achieve as much as possible before the onset of Alzheimer’s.

Hereditary

Jayde’s father was diagnosed with early-onset dementia in his early 40s which resulted in his premature death at the age of 52. After a series of tests, it was discovered that he had the faulty gene ARG278lle – a mutation of the rare PSEN1 gene that causes familial Alzheimer’s disease. Jayde witnessed her father’s symptoms worsen throughout her teenage years.  

“He started getting forgetful and tripping up on his speech. I didn’t really understand what was going on because I was so young. It was never really explained to me so it was quite confusing,” she says.

When Jayde was younger, she managed to block out concerns about the genetic element of her father’s disease. But after her uncle also passed away from the same condition, Jayde made the tough decision to get herself tested for the gene.

“I was an adult now and I’d just had my son. It became more real and a bit more serious,” she explains.

The doctor said some stuff – I don’t really know what he said because I was almost blacked out for a minute

Predictive genetic testing is available when a genetic mutation has already been discovered in the family and it can predict with near-certainty that the individual will develop the condition in later life. Following consultation, Jayde went ahead with the test and she recalls feeling numb when she first heard the devastating results.  

“The doctor said some stuff – I don’t really know what he said because I was almost blacked out for a minute. And then, while all these thoughts were racing through my head, I thought of my son,” she says.

Motivated by her concern for her one-year-old son, Jayde is now determined to do everything she can before the onset of dementia.

“I asked [the doctor] if there was anything I could do. I asked: are there any medical trials? What is the status of the disease at the moment? How far has research come in the past 10 years? Is it specific to this gene? I wanted to know everything about it,” she says.

She is currently lined up for a medical trial called the DIAN (Dominantly Inherited Alzheimer’s Network) which aims to prevent the disease with drugs and is due to begin in the near-future.  

No treatment

Currently, nothing can be done to treat the condition or delay the onset of symptoms for Jayde. Unlike other forms of Alzheimer’s which may or may not manifest, the genetic test revealed that Jayde will develop the disease.

This is not something that I can prevent

“This has been the problem with some public responses to my story. I’ve been told ‘oh, this can be done to prevent dementia.’ I’ve been told to take herbal tablets, stop smoking and exercise more. All great advice but this is not something that I can prevent.”

“The only thing that will stop the onset of the disease is medical research proving successful and a cure being developed,” she says.  

Jayde worries every day that she is already seeing the signs of dementia.

“Every time I forget something, I start panicking. I have to remind myself that this is not how the disease works. It is very black and white – the symptoms will start showing around a certain age but for the next ten years, there’s no reason to worry about my memory. If I forget something now, it is nothing to do with Alzheimer’s. I’ve just forgotten it!”

“It is both confusing and straightforward – I know that this is the age that it is going to develop and this is what is going to happen,” she explains.

Extremely rare

Inheriting Alzheimer’s from a genetic mutation is extremely rare. Jayde is part of one of only two families that have this exact gene in the UK and she believes that there are only approximately 500 families worldwide with the same mutation.

Jayde Greene
Jayde with her son

“The strangest part is that I actually met a lady from the family that has the other gene.”

Jayde got talking to a woman at the Memory Walk in London, a sponsored walk organised by Alzheimer’s Society to raise both funds and awareness.

“Her mum has the condition and she has the exact gene mutation like me. I didn’t even know until just after the walk! She added me on Facebook and as we were discussing it, she told me the exact name of the gene,” she says.   

Jayde is dedicated to raising as much as possible – both funds for research and general awareness.

“I’ve done petitions, events, walks and fundraising. I want to spread the word. I don’t think there’s anywhere near enough research going towards dementia in general, let alone early-onset dementia,” she says.

Dr Louise Walker, a research officer at Alzheimer’s Society, says that people with younger-onset dementia have different needs to people diagnosed with the condition later in life.

“People diagnosed under the age of 65 may still be in work, or have younger children who still need to be taken care of. As younger-onset dementia is comparatively rare, the right support and information is not always available.”

Alzheimer’s Society is currently funding research to find out how to better support people with younger onset dementia, and what the effect on children is of having a parent with dementia.

Devastated

For Jayde, her main concern is the future wellbeing of her son. With an affected parent, he has a 50/50 chance of also inheriting the gene. She explains that he must make his own decision about whether to get genetically tested once he is 18.  

I’ve got so many plans in my head but I must remember my capabilities

“It has definitely affected how I plan for the future but I’m still not sure how. I’ve got so many plans in my head but I must remember my capabilities. It has made me want to do the most I possibly can with my son and my family,” she says.

Although devastated by the news, Jayde’s family have been incredibly supportive.

“I have my ups and downs. I can be really positive but then I can also have a couple of weeks where the only thing I can think is: ‘I’m going to die early.’ I am going to die young and not watch my son grow up. My family help pull me out of that.”

“I’m not Wonder Woman and I can’t be positive all the time. I do have times where I am absolutely devastated by it and I can’t deal with anything,” she says.

You can find out more about Jayde’s story on Facebook or donate through her JustGiving page.

3rd November 2017