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TV documentary champions the pioneer behind Genetic Alzheimer’s Research

John jennings next to his father Stuart, Carol and Emily

There’s a 50/50 chance John Jennings will go on to develop Alzheimer's, his mum Carol started showing signs of the illness when she reached fifty and his sister Emily is also at risk.

"You know you tend to get older people and they're buying a pair of shoes and they're like, 'Those will see me out'. I've basically always had that attitude," Jennings told BBC News [Pictured above next to his father Stuart, Carol and Emily]

"I'm like, 'Shall I buy a new laptop?' - because I've had Macs that have lasted 10 years in the past."

The 39-year-old from Edinburgh lives with his husband Matt, but he is unsure if he will always remember their wedding day.

"I'm trying to learn loads of languages and I'm obsessively exercising. I know for most people that would dramatically reduce my risk of getting Alzheimer's," John explained, "but the fact of the matter is, for me, it doesn't make any difference."

His grandfather [Carol’s father] and four siblings were all diagnosed with the condition in their 50s - could this really be just a coincidence?

In the 1980s there was no evidence Alzheimer’s was hereditary, but when Carol’s family members started to be diagnosed with the illness, the teacher from Coventry knew she had to take action.

She wrote a letter to a team at University College London [UCL] studying Alzheimer’s in 1986 sharing her medical background.

In 1991 research recorded her family shared the amyloid precursor protein [APP] gene which forms when too much protein builds up in the brain which kills off vital cells making the organ function properly.

"If someone has the gene, they will develop disease at around the same time that their family members did," consultant neurologist, Dr Cath Mummery, head of clinical trials at the Dementia Research Centre, at UCLH, told the BBC ahead of a new documentary.

"So they are aware of the ticking time bomb, especially as they near that age.”

John said: “It's tempting to think if I discovered that I had it, that Emily didn't, and vice versa.

"But it could be that both of us do. It could be that neither of us do."

Alzheimer’s can be detected by a blood test, something Carol never wished to take; But John wants to know if he is carrying the illness.

"We could have planned better if we knew that she had," said John.

"I think if one of us had the test then the other one would probably follow pretty quickly afterwards.

"So it almost feels like it's a decision we need to make together."

Carol first started showing symptoms of the condition in the mid-200’s, the illness slowly progressed, towards the end her life she was bedbound and unable to speak.

Carol passed away in March 2024, she asked for her brain to be donated for scientific research.

Genetic Alzheimer’s Disease is rare, it’s separate from the typical Alzheimer’s Disease which affects one in 11 people aged over 65 in the UK, but the research into the latter could hold a key to a brighter future.

"If we can find a treatment that works in this genetic form, then we might be able to extrapolate from that to a treatment for the more common, non-genetic Alzheimer's Disease," Mummery explained.

All this can be traced back to Carol’s letter she wrote to UCL in the eighties, four decades on her son is focused on carrying on her legacy and, hopefully in his lifetime, finding a cure.

"I'd really like to live long enough to see that - and I think I might.”

[ The Jennings v Alzheimer’s is on BBC Two, Monday 13th May at 9pm, also available on BBC iPlayer. ]

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