James Bexon received the devastating news that he was likely to develop Alzheimer’s disease between the ages of 53 and 63. His father had been diagnosed at 58, prompting James to take an NHS test in 2018 which showed a 99.9% chance of him getting a rare genetic form of the condition. Because of the strong familial link, James qualified for the test which left him questioning whether he may pass it on to his two sons.
However, neither Elijah nor Jacob have inherited the gene which causes genetic Alzheimer’s. James came from a family where half of its members had developed the condition, so he had numerous counselling sessions before his blood test in March 2018. However, six weeks later the results arrived, leaving James to face his demons.
“The counsellor had a trainee with her, and I read it on her face when I went in,” he said. “You half expect it anyway because it’s prominent in the family. I just thought that was the hand I’d been dealt, I had that feeling, even though it’s 50/50.” Feeling that the build-up of the protein amyloid had already started to stop his memory and slow everything down, James knew that he had to prepare himself and his family.
He even considered whether or not to test his two children for the gene while they were still in the womb, but he and his wife Gemma decided to proceed with the tests, and both Elijah and Jacob tested negative. There are concerns over private tests, which only tell you the risk rather than the NHS tests, which can pinpoint a genetic mutation. Dementia UK nurse Jules Knight said that when someone is referred to genetic testing, they should have both pre and post counselling.
For James, the NHS test has given his family peace of mind. “We’re not going to have anymore children, so we know that’s it for genetic Alzheimer’s,” he said. “For me, it was all about trying to stop it in its tracks in our family. There’s only so much you can do, and we’ve done what we can.”he said
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