An investigation has been launched into how a man was wrongly diagnosed and treated for Alzheimer’s disease for seven years.
Alex Preston said the misdiagnosis had ruined his last years with his wife and he had been forced into early retirement due to the blunder.
Health professionals even refused to discuss his wife’s cancer diagnosis with him because of his supposed condition in the run-up to her death.
Mr Preston threw himself into fundraising for the disease after being diagnosed with Alzheimer’s following a period of low mood and anxiety.
Friends would frequently tell him “you seem like you’re doing well” because of the way he seemed to be coping with the disease.
But when further tests were carried out after a new nurse who had been assigned to him suggested he see a consultant, they revealed the original diagnosis had been mistaken.
An independent investigation into Mr Preston’s case has now been launched by Leicestershire Partnership NHS Trust (LPT) to establish how the misdiagnosis took place and why it went undetected for so long.
Mr Preston, now 62, from Anstey, Leicestershire, told The Telegraph he “basically gave up on life” as he thought he was dying and considered suicide.
He also lost the job he loved as a senior technical shift operator for a major water supplier because he was deemed not fit enough to work with chemicals and machinery.
He said: “I went from earning £39,500 a year to getting nothing.”
Mr Preston said he asked his wife, Susan, to leave him three times to spare her suffering through his ordeal.
He said: “I didn’t want her worrying about me. But she stood by me, and was diagnosed with cancer herself which sadly took her life.”
Mr Preston’s wife was diagnosed with terminal cancer in 2018 and died in November the following year.
Mr Preston was diagnosed with Early Onset Alzheimer’s at the age of 55 by a consultant at the Bradgate Unit, part of the LPT, in 2014. He underwent two scans and completed several memory tests over the space of around six months.
A few years after being diagnosed, Mr Preston became involved with the Alzheimer’s Society charity. He gave talks to trainee doctors and at conferences about what it was like to live with the disease and helped produce a series of short videos for the Young Onset Dementia app.
Medical staff refused to discuss wife’s cancer diagnosis
He said: “I felt my life had fallen apart and every dream me and Susan had, our future had gone. I was living life as an Alzheimer’s sufferer and was even doing gigs to help fund the Society and going to group meetings with other patients.”
In a further cruel twist, he claimed medical staff would not talk to him about his wife’s condition because of his own diagnosis.
He said: “Doctors were talking past me, not to me, as if I didn’t exist. They were so condescending and made me feel really bad.
“She died thinking I would be left alone with my illness and not being able to cope. If she knew I didn’t have dementia she would be so pleased and relieved for me, as I am, but also so angry I had been wrongly put through all this.”
Despite the fact that he had cared for his wife alone for 15 months and visiting nurses had said he was doing well, nobody thought to reassess Mr Preston or question his original diagnosis.
With the onset of the Covid pandemic, Mr Preston said he heard less frequently from the hospital and as a result says he began getting on with his life without health professionals around to reinforce his diagnosis.
His friends told him he seemed to be doing well and he decided to ask for a scan of his brain.
Mr Preston was eventually assigned a nurse who put him in touch with a new consultant.
Following a fresh set of memory tests and a final scan, his original diagnosis was labelled incorrect. Mr Preston says he later found out there was no evidence of disease in his original scans, and alleges there were errors in marking and scoring in the tests leading to his diagnosis.
He said: “I was so relieved but I felt anger towards the doctor who had wrongly diagnosed me.
“Whether it was her fault alone, or her superiors too, I don’t know but it makes me very angry.
“I just want to make sure this misdiagnosis doesn’t happen again. I don’t want another couple to suffer as we have.”
He told Leicestershire Live: "I do not want this to happen to anyone else because it completely destroyed my life.”
Tim Beanland, the head of knowledge at Alzheimer’s Society said: “We have huge sympathy for people who have been misdiagnosed and have remained in the dark about their health for longer than they should have. Being wrongly diagnosed with dementia is quite unusual and it’s essential that people recognise the symptoms of dementia and do not put off getting the diagnosis they need.
“Our latest research shows that people are more likely to delay seeing their GP because dementia symptoms are mistaken for normal ageing, which is why Alzheimer’s Society have developed a new downloadable ‘symptoms checklist’ available online for anyone who is concerned about dementia to take to their GP for an easier experience.”
The LPT is currently carrying out an investigation into Mr Preston’s case after he filed two complaints with them. Their first response apologised for the impact the initial diagnosis had on his life and well-being.
The trust said: “Leicestershire Partnership NHS Trust take all complaints very seriously. The Trust has been liaising closely with Mr Preston since the complaint was first raised.
“We are currently undertaking an independent review of the case, with an independent clinical witness from outside of our Trust; it would be inappropriate to comment further until this review has been concluded and shared with Mr Preston.”