'It's a licence to live' says 23-year-old, UK's youngest person with dementia

A 23-year-old is believed to be the youngest person in Britain diagnosed with dementia but he’s making plans for kids, a house and even has a bucket list, as he describes his diagnosis like “a licence to live”.

'Some would say it's a death sentence'

Two years after his mother died of a rare form of frontotemporal lobe dementia called Pick’s Disease, Jordan Adams was told last month that he will develop symptoms of early onset dementia and perhaps also Parkinson’s Disease.

Having inherited a rare dementia-carrying gene, Jordan could develop symptoms at any time and so he has decided to make the most of his shortened life.

“Some people would say my diagnosis is a death sentence I would rather say that it’s a licence to live”, he told Caters News. “Initially when I found out I had the gene I was devastated. Since the diagnosis, I’ve been very positive, very upbeat about everything. That’s the only way I can really survive”.

Referring to his mother, Jordan said: “To watch somebody with dementia deteriorate is very difficult.” He describes in particular watching her “become a person that’s very different to how you remember them, especially from a young age.”

He recalls her as “a very vivacious, loving character” who became a very cold and distant person. She was finally diagnosed with dementia in 2010 and he witnessed his mother deteriorate every week for the next six years. In the last three years of her life, she could no longer walk or talk and was fed via a tube going directly to her stomach.

“In the later stages, when she’s literally just existing. It’s something I can’t really put into words.”

After his mother died, Jordan’s grief was mixed with fear as he realised he had a 50 per cent chance of inheriting her condition. The disease is hereditary, aggressive and rare and a year later his mother’s sister died from the disease. The next year, his mother’s cousin passed away. Four of his mother's cousins live with the disease.

Planning for a family

Now Jordan and his 21-year-old girlfriend Lucy, are now making big plans fast. His girlfriend is pursuing IVF treatment with doctors who can screen Jordan’s sperm for the dementia-carrying gene before any symptoms of the disease develop.

“I’ve had the option to have the test and also have the IVF treatment to stop this gene being passed on to my children”, he said.

And the young couple are prioritizing having children before setting a wedding date. Jordan also plans to buy a house and take lots of holidays abroad including a trip to Hawaii.

Jordan still has much hope for the future and is keen to take part in research to help those working to find a cure. He also wants to raise money for dementia charities like Alzheimer’s Society and Dementia UK.

His family have set up a GoFundMe page to help Jordan complete his own personal bucket list of goals and dreams before he develops signs of dementia.

Jordan has this advice for anyone in his situation: “I would suggest surrounding yourself with people who love them and really take time to speak to others. I think it's important to talk. Not only will it help you but it will help others.”

To help Jordan Adams complete his bucket list, you can donate to a GoFundMe page set up by his brother. So far, (3 October) £7,389 has been raised, surpassing the £1,000 target.