I was given shock dementia diagnosis at 49 – a subtle change in my work was the first little-known sign
A man diagnosed with dementia in his 40s has revealed that a slight change in his working abilities was the telltale sign his brain health was in decline.
Peter Alexander, now 56, never expected to be diagnosed with the memory robbing disorder when he went to see a neurologist in 2018.
‘I was starting to struggle to meet deadlines (at work), which had never been a problem before, and during meetings, I wouldn’t be able to think of a word when speaking,’ he told BBC Northern Ireland.
He was sent for a scan which on 14 January that year, which revealed the devastating cause of his problems — frontotemporal dementia, a type of the disease more commonly diagnosed in younger patients.
‘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,’ he said.
Frontotemporal dementia is a rare form of the condition which accounts for around one in 30 cases in the UK.
It gets its name from the parts of the brain it damages, the frontal and temporal lobes, areas that govern personality and behaviour, language and the ability to plan and organise.
Patients often notice bizarre changes in their personality — for instance making insensitive, outlandish comments, or becoming more disorganised than usual.
Peter Alexander, now 56, never expected to be diagnosed with the memory robbing disorder when he went to see a neurologist in 2018
In contrast to other forms of dementia, the memory problems most commonly associated with the condition only occur later stages of the disease.
This means people can often suffer symptoms for years before getting an official diagnosis.
‘I might not always be able to express it in the same way, but I’m still the same person I was, inside I’m still Peter,’ he said.
Mr Alexander, speaking in a YouTube video, also spoke about his loss of filter had led to him using more of what he dubbed crudities like swear words,
But he described this as a bit of a liberty: ‘People just say “Peter why are you saying that now in the past you would never have said that” but there’s this disinhibition, which some regard as being inexplicable and just downright rude,’ he said.
‘But for me it’s a liberty and a freedom that I didn’t enjoy before with that side of the mind.’
‘They might be embarrassed by me don’t be embarrassed it’s just who I am it’s the unvarnished Peter.’
He also shared how his dementia had diminished his ability to add numbers together, but had also given him an more musical voice a change he attributed to his brain relying on other sections to form words and sentences.
As part of this mission Mr Alexander has taken part in a documentary called Hear Our Voice which focuses people with young-onset dementia, medically defined as people being diagnosed with the condition before the age of 65
‘Because once this, some might regard as being the “logical” side of the brain is diminishing and deteriorating things are opened up on the other side of the brain,’ he said.
‘Rhythm, music, these things become increasingly fluid and it enables us to speak in a way that is more rhythmic.’
Mr Alexander is now working to address stigma around the disease and wants others to know that dementia is not a condition that only strikes the elderly.
As part of this mission, Mr Alexander has taken part in a documentary called Hear Our Voice which focuses on people with young-onset dementia — those diagnosed with the condition before the age of 65.
Frontotemporal dementia develops when nerve cells in the brain become damaged as a result of a build-up of several harmful types of protein.
The loss of nerve cells eventually causes the brain the stop functioning correctly, ultimately leading to death.
Scientists are still working to understand what triggers this toxic build-up of protein though for it’s estimated to be genetic in about a third of patients.
The average survival time for a frontotemporal dementia patient is about 8-10 years after symptoms start, though medics say this is highly variable between individuals.
But they can also be a sign of dementia — the memory-robbing condition plaguing nearly 1million Brits and 7million Americans
It is incurable and progressive, meaning it will get worse over time.
While there is no cure early diagnosis is considered key as medications and treatments can help combat the symptoms.
Frontotemporal dementia is one of the leading causes of young-onset dementia.
The latest figures suggest almost 71,000 people in Britain are currently living with young-onset dementia, accounting for about 7.5 per cent of all diagnoses.
This is a rise of 69 per cent from the figure recorded in 2014.
Scientists aren’t yet sure of the drivers behind the rise, but they believe it may be due to the same factors causing an uptick in the condition in all ages.
This includes the ageing population, increasing obesity, poor diets and greater awareness of the condition leading to more diagnoses.
Dementia affects an estimated one million people in the UK and has a variety of causes, such as Alzheimer’s disease and reduced blood flow to the brain following a stroke, known as vascular dementia.
Around 900,000 Britons are currently thought to have the memory-robbing disorder. But University College London scientists estimate this will rise to 1.7 million within two decades as people live longer. It marks a 40 per cent uptick on the previous forecast in 2017
Recent analysis by the Alzheimer’s Society estimated the overall annual cost of the dementia to the UK is £42billion a year, with families bearing the brunt.
An ageing population means these costs – which include lost earnings of unpaid carers – are set to soar to £90billion in the next 15 years.
Around 944,000 in the UK are thought to be living with dementia while the figure is thought to be around 7million in the US.
Memory problems, thinking and reasoning difficulties and language problems are common early symptoms of the condition, which then worsen over time.
A separate Alzheimer’s Research UK analysis found 74,261 people died from dementia in 2022 compared with 69,178 a year earlier, making it the country’s biggest killer.
