Dementia is often associated with older age, but it can strike when you least expect it – even in your younger years.

Peter Alexander’s life was forever changed in his 40s when he was diagnosed with dementia. Now, with courage and a deep desire to help others, he’s on a mission to raise awareness about the importance of recognizing the symptoms early.

His story is both heartbreaking and inspiring.

”No longer safe for me to work”

It all started before Peter was about to turn 50. Peter, who is originally from England but has lived in Northern Ireland with his wife, Jill, for several years, began to feel like something wasn’t right.

He made an appointment with a neurologist and was sent for a scan.

”I remember the date very clearly, it was 14 January 2018 when the results came back and the doctor said: ‘Peter, I have diagnosed you with having frontotemporal dementia,” Peter told BBC.

”I was basically told that it was no longer safe for me to work because I have diminished judgment and I was losing my filter, so it was a lot to adapt to.”

The diagnosis was, of course, a shock to Peter and his family – even though he had felt for some time that something was wrong.

The problems had been evident for a while, especially when Peter was working. He was starting to struggle to meet deadlines, which had never been a problem before, and during meetings, he wouldn’t be able to think of a word when speaking.

Frontotemporal dementia is a rare form of the condition, leading to significant issues with behavior and language.

”People think when you have dementia it’s only about forgetting things but it’s more complex, it can manifest in different ways,” Peter says.

“I don’t want to be treated differently, it’s imperative that people actually see the person, see beyond the condition. Sadly for many people, the diagnosis can take an awful long time and that puts an enormous amount of pressure on the family unit.”

For Peter, the diagnosis meant quitting his job and adjusting to a completely new lifestyle. Now, he is working to challenge the stigma surrounding a condition typically linked to older adults.

Same as Bruce Willis

Peter’s experience mirrors that of many others, including actor Bruce Willis, who was recently diagnosed with aphasia, a condition affecting his ability to communicate, which eventually led to a diagnosis of frontotemporal dementia.

Just like Willis, Peter emphasizes the importance of seeing the person, not just the diagnosis. It’s a reminder that those struggling with these conditions need compassion and understanding, not pity or avoidance.

Frontotemporal dementia (FTD) affects an estimated 60,000 people in the U.S., but many doctors are still not familiar with the condition. FTD is often misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric disorder. On average, it takes about 3.6 years for people to receive an accurate diagnosis,
according to The Association for Frontotemporal Degeneration.

Peter is using his YouTube channel as a platform to raise vital awareness about frontotemporal dementia. In a video he posted in February, Peter opened up about how the condition impacts his speech and his ability to perform basic cognitive functions.

For example, Peter sets up a simple math equation, explaining how he used to do addition ”without difficulty,” but now struggles to remember the first part of a calculation if he has to do another one right after and then combine them together again.

”Before I could actually do it very rapidly and without consciously thinking of it, but with the impaired judgement and the impact on the executive function of the brain, it makes these things difficult,” he reflected. ”So the working memory is impacted.”

However, Peter also points out a positive aspect of his condition. Despite some areas of his brain shutting down, he has noticed that other parts of his brain are ”opening up,” particularly in areas like rhythm and music.

”Rhythm and music becoming increasingly fluid” he says, adding that he’s discovered ”a freedom that [he] didn’t enjoy before.”

I think it’s incredibly brave of Peter to openly share his diagnosis like this. It seems to be an underdiagnosed condition, and that only causes more suffering for so many people. Please feel free to share this article so more people can learn about the early symptoms and read about Peter’s story.