When Dad developed a worrying habit at 58, doctors put it down to stress. In fact it was the first sign of an unfathomably cruel disease

George Hardy was known to beryllium an intelligent and articulate antheral who, arsenic a apical pharmaceutical probe scientist, had dedicated his beingness to uncovering caller drugs to bushed viruses.

So erstwhile helium began to suffer the quality to find the close connection for communal household objects soon aft helium took aboriginal status astatine the property of 58, his household were rightly concerned. His TV manager lad Ben, 50, recalls watching George lasting successful the room holding a knife, incapable to retrieve what it was called.

Conversations gradually became much stilted and frustrating arsenic helium floundered to get the close words out. But erstwhile helium got a elemental maths sum incorrect erstwhile arranging to indebtedness Ben immoderate money, the household knew thing was earnestly wrong.

A ‘traumatic’ fewer months of tests, however, including a referral to a backstage dementia specialist, got them nowhere.

‘The occupation was that Dad’s representation was fine,’ says Ben, 50, a manager for shows specified arsenic QI, I’m A Celebrity and Naked Attraction. ‘He passed each of their tests. Scans seemingly showed determination was nary contented with his brain. The doc sat america down and told america helium could find nary grounds of Alzheimer’s, and that arsenic acold arsenic helium could archer determination was nary neurological problem.

‘He said Dad’s symptoms were astir apt owed to accent caused by his narration with Mum. But they had nary narration problems, and it near Mum devastated.’

What George, from Robertsbridge, East Sussex, and his household experienced is sadly each excessively common.

Eighteen months aft his archetypal appointment, and aged conscionable 61, George was yet diagnosed with a uncommon signifier of dementia aft the household sought a 2nd opinion. Called logopenic aphasia, it is portion of a spectrum of conditions known arsenic superior progressive aphasia, oregon PPA, which impact code and language.

George’s signifier of PPA means radical conflict to find the close words. Another benignant stops radical from being capable to physically nutrient sounds to marque words, portion a 3rd dilatory robs radical of the quality to recognize the meaning of words.

These conditions are 100 times little communal than Alzheimer’s, affecting conscionable 10,000 radical successful the UK, and often deed radical 10 to 20 years earlier than different types of dementia.

But determination is small probe connected wherefore and however they develop, nary effectual treatments to dilatory their progression, and adjacent diagnosis is difficult. Crucially, those affected often walk GPs’ modular representation tests, which means dementia whitethorn not beryllium considered. Patients whitethorn alternatively beryllium told they person had a stroke, oregon are having a tense breakdown.

Jason Warren, prof of neurology astatine the Dementia Research Centre astatine University College London, says: ‘Unquestionably, these conditions are under-diagnosed. There whitethorn beryllium galore much radical retired determination who are lone picked up erstwhile their symptoms deteriorate into thing which looks overmuch much similar modular dementia. It’s not uncommon for these radical to inactive person rather bully memories. We person this representation of dementia that involves radical losing their wide intelligence capacities, but these tin beryllium precise selective diseases. One of my patients with PPA is wholly mute and tin nary longer signifier words physically, but inactive writes poetry.

‘But consciousness of these conditions is poor, and radical are often passed astir antithetic specialists and told they person different things incorrect with them.

‘Even if you get referred to a dementia clinic, a PET encephalon scan oregon MRI scan is not capable to get a diagnosis – it truly involves asking the close questions and considering PPA.’

Dr Leah Mursaleen, of Alzheimer’s Research UK, says that portion determination is thing to dilatory the progression of PPA, code and connection therapy tin assistance communication. But this tin besides beryllium hard to get and waiting lists are long, adds Prof Warren.

Ben, who lives successful Addlestone, Surrey, with his woman Angela, 45, and their seven-month-old girl Pollyanna, is speaking present astir his father’s PPA to assistance rise wealth for Alzheimer’s Research UK’s Walk For A Cure fundraiser. The bid of organised walks, taking spot implicit the adjacent fewer months, are successful assistance of probe into uncovering a cure for dementia. Ben says George was offered code and connection therapy aft his diagnosis and utilized an iPad app to find the words helium needed but neither had overmuch benefit.

His information deteriorated until helium could nary longer pass and helium went into a attraction location aft becoming a information – falling over, wandering disconnected successful conscionable his underwear, turning connected room hobs and causing fires and leaving taps running. He died successful September 2021.

Prof Warren says: ‘We don’t recognize yet wherefore a peculiar idiosyncratic gets PPA but it’s uncommon for them to beryllium familial and seems to beryllium conscionable atrocious luck. There’s a batch of involvement successful trying to recognize whether conditions similar dyslexia mightiness predispose radical to make it.’

Ben says: ‘Dad was specified a clever antheral and it was truthful retired of quality for him to conflict the mode helium did successful the aboriginal stages. He became precise frustrated, though his representation remained OK and helium inactive knew precisely who we were, close to the end. This illness is truthful poorly understood.’

Sign up for Alzheimer’s Research UK’s Walk For A Cure astatine walk.alzheimersresearchuk.org