James Bexon Faces Grim Future with Genetic Alzheimer’s Diagnosis, But Finds Hope for His Children

James Bexon’s Early Diagnosis of Genetic Alzheimer’s

James Bexon, at the age of 33, received devastating news – he was told he had 20 to 30 years before developing Alzheimer’s. The familial link was strong, as his father was diagnosed at 58. In 2018, James decided to take an NHS test which revealed a 99.9% chance of him inheriting a rare, genetic form of the condition.

Passing on the Genetic Risk

With this information, James was left wondering if he would pass the gene on to his own children, Elijah and Jacob. However, neither of his sons inherited the gene that causes genetic Alzheimer’s.

Living with the Uncertainty

Living in Tan-lan, Gwynedd, James began the testing process for genetic young-onset Alzheimer’s. Unfortunately, his father passed away from the disease shortly before the testing began. With half of his family members having developed the condition, James had numerous counseling sessions to prepare for the possibility of bad news. Six weeks later, he received the results.

“The counsellor had a trainee with her, and I read it on her face when I went in,” James shared. “You half expect it anyway because it’s prominent in the family. Obviously if it was a ‘you haven’t got it’, that would be amazing. I just thought that was the hand I’d been dealt, I had that feeling, even though it’s 50/50.”

Living in the Face of Alzheimer’s

As someone at risk, James understands that the build-up of the protein amyloid, which targets genetic dementia, can disrupt memory and slow everything down, and these changes can occur 20 to 15 years prior to developing symptoms. The uncertainty weighs heavy, especially as his children, Elijah and Jacob, grow older. James yearns to have a long life, be a loving grandfather, and is focused on appreciating the time he has with his family.

The Decision to Test His Children

James and his wife Gemma faced a difficult decision – whether to test their two children for the gene while they were still in the womb. Ultimately, they chose to proceed with the testing, and both children were found to be negative for the gene.

Genetic Testing for Dementia in the UK

In Wales and England, the NHS provides tests for rare inherited forms of dementia, including genetic young-onset dementia. Approximately 7% to 12% of young-onset dementia cases are genetic, and presently, 70,800 individuals are living with young-onset dementia in the UK.

Early diagnosis is crucial for the effectiveness of drugs, such as donanemab, that have shown promise in slowing cognitive decline. However, private tests for other types of dementia are not available through the NHS.

The Pros and Cons of Genetic Testing

While private tests can indicate the risk for developing certain forms of dementia, NHS tests are definitive in determining genetic mutation. However, genetic risk variants do not guarantee the occurrence or absence of the disease. NHS testing is accompanied by extensive emotional support, including pre and post-counseling.

Finding Peace of Mind

In James’s case, testing allowed his family to find peace of mind. Realizing that they have taken necessary steps, James believes they have done all they can to stop the genetic Alzheimer’s in their family.