'I've got dementia aged 23': Jordan's devastating diagnosis after inheriting rare gene from mother

Chris Parsons
News Editor

A 23-year-old is believed to be one of the youngest adults in the UK with dementia – after inheriting the gene from his mother.

Jordan Adams was told he would develop early onset frontotemporal dementia and Parkinson’s Disease, a condition which will worsen as he gets older.

He inherited a gene which causes the degenerative condition from his mother Geri, who died aged 52.

Entrepreneur Jordan, from Redditch, Worcs, was given the crushing news that he had a rare mutation of the MAPT gene last month.

Jordan Adams was told his early onset frontotemporal dementia and Parkinson’s Disease would get worse as he gets older. (Caters)

While Jordan has no signs of the illness now, doctors have told him he could lose the ability to walk, talk and eat for himself at any time and his life could end in his fifties, as his mum and aunty Ann did.

He now plans to have his sperm screened for the gene so he and girlfriend Lucy Thomas, 21, can start a family before his symptoms develop.

Jordan said he saw the full impact of the disease while caring for Geri, as he watched her lose the ability to talk, walk and eventually eat and breathe for herself.

Jordan was given the news he had tested positive for the gene when he and sister Kennedy, 25 decided to get themselves tested after watching beloved mum Geri deteriorate over a period of six years.

Geri Adams with Jordan and Kennedy as youngsters. (Caters)

He was finally given the results on September 12 after three gruelling months of consultations and blood tests.

He said: ‘When I was told the diagnosis I was devastated. We had been in the waiting area for what seemed like hours – it was only 10 minutes but it felt like an eternity.

‘As soon as I walked into the room I knew it wasn’t a positive result – nobody can prepare you for that.

‘If there are no advancements then I’ll have a shorter life than most.

Jordan’s mother Geri died aged 52 after battling dementia for eight years. (Caters)

‘It’s like a death sentence.

‘It’s very hard to explain. We’re all dealt cards in life and I was just incredibly unlucky.’

Jordan’s family first noticed something was wrong with his mum Geri in 2006, when she suddenly began acting out of character, but she was not diagnosed until 2010 before passing away in 2016.

He said their usually compassionate, caring and generous mother ‘slowly got stripped of her communication’, before later losing her mobility and ability to go out alone.

Jordan said that despite his initial shock, he and girlfriend Lucy have discussed their plans for their future together and that he feels like his diagnosis will give him a unique perspective on life.

Jordan, pictured with girlfriend Lucy, said he’s not determined to live life to the full after the devastating diagnosis. (Caters)

They are considering having IVF when they decide to start a family as the process will allow doctors to screen his sperm for the dementia-carrying gene.

Jordan said: ‘I feel like the diagnosis is actually a licence to live.

‘It’ll make me step back and appreciate the bigger picture. It’s going to allow me to make choices to live a fulfilled life.

Lucy added: ‘We’ve decided that it’d be probably best to have children first and then get married.

‘We know it’s different to how most people would it do but it’ll give Jordan more time with his kids.

‘It’s hard to deal with knowing he won’t be there one day but it’s important to retain perspective.

‘We will have a life together despite everything.’

Jordan’s sister Kennedy – who was given the all-clear from having the gene earlier this year – added: ‘He has got time but we just don’t know how much – he has no symptoms yet, but it could start tomorrow.

‘He won’t get it when he’s old and grey, but when he’s young and fit.

‘This disease is hereditary, aggressive, and rare. But Jordan’s been incredible, and he’s not going to let it destroy him.’