Jordan Adams: “My dementia diagnosis is painful but it’s also a license to live – that’s powerful.”

After caring for his mother as a teenager, as dementia took her life, 28-year-old Jordan Adams discovered that he had inherited the same faulty gene and was destined to develop the degenerative condition in his early forties. But rather that hide from his limited future, the inspirational Redditch decorator is running headfirst into adversity – via Land’s End to John O’Groats – and raising hundreds of thousands of pounds in the process.

Jordan Adams speaking on Good Morning Britain

Jordan Adams speaking on Good Morning Britain

One in two people are going to be affected by dementia in their lifetime, whether that be living with it themselves or caring for someone who is living with it, or as is my case, both.

My two siblings and I grew up in the small town of Redditch, just outside Birmingham near Worcester, and had a fantastic childhood.

My mum Geraldine was always a proud parent and an infectious character with a big smile but when I was about 13-years-old, she started to have regular bumps in the car and then one day she went to collect my older sister Kennedy from school in the car on a Saturday.

That’s when alarm bells started ringing for me and for a couple of years mum went back and forth to the GP, and initially they said she’s developed depression, possibly sparked by the death of her father in 2005, but I knew that mum just wasn’t someone with a depressive personality.

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She was also told, after some brain scans, that she might have had a silent stroke but eventually, on June 23rd 2010, she was diagnosed frontal temporal dementia, caused by a faulty MAPT gene, which is familial.

Mum’s sister was also a carrier and died a couple of years after her.

My brother Cian was only nine on that day, I was 15 and my dad called us all into the front room, shared the diagnosis and told us that we had the best part of 10 years to kind of give her as much love and care as possible before, we lost her.

But what he didn’t tell us – and retrospectively of course he did this out of a sense of protection for his children – was that the condition was potentially hereditary.

Jordan Adams

As a teenager, Jordan cared for his mum after her dementia diagnosis

The next few years were incredibly difficult and as the oldest lad in the house, and with my dad having to continue to work and leave the house at 7am, I became my mum’s main carer, particularly in the early stages.

By the time I was 17 and two years into college, my Wednesdays consisted of looking after mum until the carers arrived at 11am.

This meant feeding her, stopping her trying to climb out of the windows or attempting to unlock the door to get into the car and drive it even though her license had been revoked.

Before she eventually passed aged just 52 in 2016, I’d take her to the toilet, clean her when she’d had an accident and basically do things for a parent that really no young teenager should have to do.

The trauma of what happened has manifested itself in different ways.  For me, it’s occasional depression. For my brother and sister, it’s been anxiety and initially after mum’s death I just tried to put everything in a box.

I just wanted to get on with my young adult life, enjoy myself for a little bit and just go through a grieving process but that started to change when Kennedy, who is two years older than me, started to investigate her own genetics.

She shares a lot of mum’s physical characteristics, so she was convinced she was carrying the faulty gene too and got in touch with the Dublin Neurological Institute and in the Spring of 2018 her test results showed she wasn’t carrier, and it was the first bit of positive news the family had had for a long, long time.

I was inspired by the news, and it gave me hope that there might be a silver lining and I might not be carrier too, so I got the test too.

Jordan Adams and Mum

Jordan and Mum Geraldine

The month leading up to the test result were full of sleepless nights but finally on September 12th 2018, the diagnosis came back that sadly I was a carrier of the faulty gene and that I would develop symptoms of dementia similar to my mum’s in my early 40s.

Even though it wasn’t the result that we all wanted, and particularly that I wanted, it now meant that I could move on with my life and make choices for the future.

Obviously, there was a lot of raw emotional upset that I’d been given a diagnosis that meant that I was going to live a much shorter life but my immediate reaction, within minutes of that result being delivered, was, ‘how can I be involved in research? What can I do to play my part and turn this into something that is positive?’

My diagnosis was painful, but it was also very powerful, and I decided to accept that adversity and spin it on its head.

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I went away that day with information on research programmes and ever since I have been a biomarker in programme based out at University College London, looking specifically into familial carriers to frontotemporal dementia.

It’s all about collecting as much data as possible to monitor changes in people’s behaviour or cognitive function.

I’ve also been very public about my diagnosis ever since, writing blogs about my emotional reaction to it and got asked to appear in a programme called The Restaurant That Makes Mistakes, which is based on a social experiment carried out in Japan where a group of older people with various levels of Alzheimer’s disease were given the chance to run a restaurant to show that they still had something to give in society.

I was the only pre-symptomatic participant, and the whole experience gave me a lot of hope that even when you’re living with a dementia diagnosis, you’ve still got something to offer. People with dementia should still be accepted and integrated in society.

Jordan Adams running

Jordan and his siblings running to raise money for Alzheimer's Research UK

That project led to me becoming an Ambassador for Alzheimer’s Research UK, and I’ve got involved in more and more extreme running events with the aim of raising as much money as possible to fund research into a cure and into drugs that reduces symptoms.

I did my second London Marathon last year as the final marathon in seven consecutive days of marathons and raised more than £18,000 and this year’s London Marathon I’ll be using as training for another challenge I’m doing with my brother Kian who discovered that he was also a carrier in February 2023.

We’re running 903 miles in 31 days from John O’Groats to Land’s End and the goal is to raise £100,000 this year and our long-term aim is to raise £1million before we die.

I’m also passionate about changing people’s attitudes towards dementia, and to explain that it’s not a natural part of ageing.

Rare genetic cases like ours represent just 1% of all dementia and Alzheimer’s cases so it’s important to understand that each person who lives with dementia, even if they’ve got the same type, can have so many different challenges and symptoms that they can manage it manifests themselves in different ways. 

People ask me if I think a cure will be found for dementia in my lifetime and being 100% honest, I don’t think so as I’m a realist.

But I’m also an optimist so I do believe that something could emerge that could prevent some of the symptoms or slow them down, but dementia is like a padlock with a Da Vinci Code padlock on it. People are trying all sorts of avenues to break the code, but it’s so vast, it’s so complex.

 

Jordan Adams at number 10

Jordan Adams at Number 10 Downing Street

The future for me entails more running challenges – I’m thinking about an ultramarathon style race from one coast of America to the other – and more speaking events like the one I did recently at 10 Downing Street.

But the most important thing is that me and my brother keep ourselves as fit and well as possible and continue to be as positive as we can, and hope that we intersect at that point in time where science has the answers for us.

It might come too late for us, but the biggest part for me is just playing our part into delving deeper into the condition and getting closer to finding a cure.

www.justgiving.com/fundraising/ftdbrothers

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