“I have a 50/50 chance of getting Alzheimer’s by age 50, just like my mom”

A man whose Coventry family was the first in the world to be diagnosed with hereditary early-onset Alzheimer’s disease has shared his fears about developing the disease in his 50s. John Jennings was told he had a 50/50 chance of meeting the same fate as his mother Carol.

Carol Jennings has spent years at the forefront of early-onset Alzheimer’s research. It all started when the Coventry woman wrote a letter to University College London (UCL).

In the 1980s, Alzheimer’s disease was thought to have no family connection, but Carol urged UCL to explore the suspicion that her father’s and his four siblings’ diagnoses were linked. Years later, her fears were confirmed after a mutated gene was discovered by Alison Goate, in what she described as a “eureka moment”.

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Carol faced the devastating reality that she had a 50/50 chance of inheriting Alzheimer’s and, if she did, her two children, John and Emily, would face the same risk of developing the disease at 50 year old. She said at the time that she “didn’t see the benefits of the knowledge” and could “live quite happily with the doubt that I can get it”.

Although Carol chose not to be tested for Alzheimer’s, her health began to deteriorate as she reached her 50s. John said watching his mother become a shell of her former self was a “big shock”.

Speaking to CoventryLive, John said: “I always knew my mum was a 50/50 risk as the gene ran in our family, but my sister and I don’t really remember what our granddad used to be like as we only remember that he was sick. because it had already been diagnosed when we were children. None of us understood what it was like to go from being good to being bad because we had never seen my grandfather bad, so when my mother started getting sick it was definitely the bigger shock for us.”

UCL researchers identified a gene in 1991 that all her affected family members shared. A mutation in the Amyloid Precursor Protein (APP) gene means that too much amyloid protein builds up in the brain, which clumps together to form plaques and causes brain cells to die, causing Alzheimer’s disease.

John, who was brought up in Coventry but now lives in Edinburgh, has been told he has a 50/50 chance of developing early-onset Alzheimer’s. He said the one thing he fears most is losing the bonds he shares with loved ones, like Carol’s mother did.

He said: “I think my biggest fear is losing those connections with the people around me because I have people who really care about me, but if you don’t feel that, you’re alone in a scary place. I think that’s the thing I’m afraid of.”

It’s something John said made his strong mother “very isolated” as she battled Alzheimer’s in her 50s. Carol died in March this year, leaving behind a legacy of change that the 39-year-old vows to continue, hoping that “great breakthroughs” will soon take place.

John said: “We have no control over whether we have it or not. I think my sister and I deal with it in different ways, but we both feel that if we can do something about it, then we should, and that’s why I think that’s why I decided to keep taking it. I’m participating in the research, just like my mom did, because I really hope they’re going to have some really big breakthroughs.”

Siblings John and Emily now face an agonizing choice about whether they should be tested to find out if they carry the gene, but said they would “when the time is right”. John said: “At the moment we don’t know.

“I think me and my sister said we probably want to have tests at a similar time, like if one of us has the test, the other one will probably want to have it soon after. I think we’ll both keep moving forward and then we’ll have her when the time is right, but it’s probably not the time yet.”

After years of failures, two new drugs that slow the decline of Alzheimer’s disease are to be licensed in the UK. John described the new developments as “exciting”.

He said: “You can do the test and we’d know if we’re going to get the disease or not, theoretically we could start taking those drugs earlier, so I’m pretty confident that if they’re going to be able to remove a lot of the plaque. sooner then it would probably slow down the disease. I think if the NHS licenses them, it’s really exciting.”

Watch The Jennings Vs Alzheimer’s on Monday, May 13 at 9:00 p.m BBC Two and BBC iPlayer.

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