Dementia will be part of my future – but I know research will find a cure


By Jordan Adams | Tuesday 23 May 2023

Jordan Adams has inherited a rare faulty gene that means he will develop the form of dementia his mum, Geraldine, died from. Here he shares why he’s so positive that research will find a cure and end the heartbreak of dementia.

It felt like I’d been in the hospital waiting room for hours. But it was just 10 minutes. As soon as I saw the doctor, I knew it was going to be the worst possible outcome.

That day – 12 September 2018, when I was 23 – was when I found out I had inherited the gene that caused my mum’s dementia.

And that, as a cruel result, I would go on to develop the condition too.

I was just 15 when my mum was diagnosed with frontotemporal dementia. She was only 47. What it did to her was unforgivable.

Dementia steadily stripped her of everything that made her who she was. From her sense of humour to her dignity, from the loss of her speech and other motor skills. And she slept for 20-plus hours a day before finally being permanently bed-bound.

That was such a young age to have to deal with losing my mum in such a horrible way. And I know it’s what’s coming for me.

My situation is rare – only 1% cases of dementia are caused by inherited fault genes. But dementia is all too common, every three minutes someone develops dementia, and – if nothing changes – they will have the same fate.

While there is so much uncertainty about my future, what I am certain of, is the power of research to find a cure for the diseases that cause dementia.  It has to.

Because no one’s life should ever end this way. And no one should ever have to witness their loved ones being taken from them like this, while powerless to stop it.

For me, as things stand, it will mean I have a shorter life than most. But while my mum’s dementia was unstoppable, there is hope that through developments in research, I may not have the same experience as her.

It’s thanks to research that we now understand a lot about the link between our genes and dementia. And why my family has been so affected by this cruel condition.

A photograph of Jordan as a baby with his late mum, Geraldine.With the discoveries made so far and the promising news about new treatments on the horizon, I firmly believe that we are at the beginning of the end for dementia.

That is why I am so passionate about supporting Alzheimer’s Research UK. It’s why I share my story to raise awareness and why I take on running challenges to raise vital funds.

This is the organisation leading the way in the search for a cure. A cure for everyone affected by dementia. Whether it’s a rare inherited form like mine, or the more common forms that affect millions of people around the world.

So, please stand with me, stand with Alzheimer’s Research UK and do what you can to help ensure the heartbreak of dementia is completely eradicated from our world.

That’s what I, and every single person affected by dementia, is counting on.


Together, we can end the heartbreak of dementia

Every 3 minutes dementia steals a happily ever after. At Alzheimer’s Research UK, we are determined to change the ending for people affected by dementia. We exist for a cure.

Your support helps scientists and researchers find new ways to detect dementia early, develop new treatments and find a cure for dementia.

Together, we can stop dementia. You can help change the ending.

Watch our new video and take action today >

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About the author

Jordan Adams

Jordan’s mum, Geraldine, was diagnosed with frontotemporal dementia (FTD) in 2010 aged 47. She died in 2016, aged 53.

Geraldine’s dementia was caused by a rare faulty gene. In 2018 Jordan went through genetic testing and found out that he carries the gene so will develop FTD around the same age as his mum.

Jordan, who lives in Redditch in Worcestershire, has a positive mindset around finding out he has the gene and describes it as a ‘licence to live’. He has raised thousands of pounds for Alzheimer’s Research UK through running challenges, including completing a challenge to run seven marathons in seven days in 2022.