Family shocked at their 92 year old parent’s MISDIAGNOSIS – “Mum's her old self again but we've already sold her home”
- Replies 3
Marian Wilkinson was diagnosed with dementia by a specialist after the 92 year old started showing its symptoms: forgetfulness, growing paranoia, and falls. Her heartbroken family was told that her condition would only go downhill from there.
Following a series of tests and a brain scan, the specialists came to the conclusion that she had a combination of Alzheimer's and vascular dementia, which develops from reduced blood flow to the brain.
She had already moved to a care home a few months before the diagnosis after raising concerns about her ability to live alone safely. At this point, the family was forced to sell her house and most of her belongings to help cover the expenses.
However, a few months later, something miraculous happened. Marian's cognitive ability had not declined as expected. In fact, it was the other way around. Her paranoia, including delusions about someone stealing her belongings, gradually faded.
To her family's astonishment, Marian 'became herself again'.
Marian's son David explained: “My sister spoke to Mum and told me she seemed to be getting better. She slowly returned to herself – the delusions stopped and she was much more with it.”
In March, an assessment made by social workers confirmed that Marian indeed had the capacity to make decisions for herself and had 'good recall and insight into her needs'.
Marian Wilkinson pictured. Image Credit: DailyMail
Marian was able to recall vivid memories spent on the beach way back in the 1950s. And with similar clarity, she even mentioned her grandson's recent move to meet a girl he met online.
She had also started writing poetry and had just finished reading a collection of Winston Churchill's speeches.
Marian’s case seems to be an impossible turnaround and David insists that it’s probably because it IS too good to be true. He suspects that her dementia had not simply vanished out of thin air – instead, he questions whether the specialists at the Greater Manchester Mental Health NHS Foundation Trust got the diagnosis right.
“Although I understand why they made the diagnosis at the time, in light of the dramatic improvement it seems clear that a mistake has been made,” he explained. “She's been back to normal now for the past few months, asking where her belongings are, and I have to tell her they have gone.”
“We'd just like the mistake to be recognised, so we can understand what happened too.”
Marian's case may come off as staggering, but experts revealed that it is not as unusual as one might think. Over the past few years, hundreds of the UK's leading dementia specialists have begun to voice concerns about patients possibly being misdiagnosed.
Among them is Robert Howard, a professor of old age psychiatry at University College London. He said: “I've seen people who were diagnosed with dementia several years ago and have not gotten worse at all. Some have even gotten better. They clearly don't have dementia.”
Alzheimer’s progression. Image Credit: Everyday Health
“Even if just one or two percent of diagnoses of dementia are wrong, that is still thousands of people every year.”
An estimated 120,000 people in the UK are diagnosed with dementia every year, with Alzheimer's disease being the most common type.
There have been several instances of elderly people becoming very confused in hospitals and doctors immediately diagnosing them with dementia.
Professor June Andrews who has been a dementia nurse for over 30 years and is one of Britain's leading voices in the field shared: “The person then gets sent to live in a care home and their house is sold. But six months later, they are no longer confused and want to go home. But there is no home to go to.”
Experts argued that the inaccurate diagnosis doesn't only lead to life-changing repercussions, it can also be psychologically devastating and lead to people taking unnecessary dementia medication. And to make things worse, it also restricts them from getting the treatment that they actually need to combat the real, unidentified illness causing their symptoms.
The issue followed a month after an independent review was released into mental health services at Leicestershire Partnership NHS Trust.
54 year old Alex Preston, who was a former water treatment specialist, was falsely diagnosed with early-onset Alzheimer's disease for eight years.
Professor Howard knew something had to be done when some patients were able to eloquently speak in public about their ‘disease’.
He stated: “There are people out there giving talks and writing books many years after their diagnosis, and their condition doesn’t appear to have deteriorated at all. Dementia is degenerative – the symptoms get worse over time. I don't doubt these people suffer some cognitive problems, and believe they have dementia. Seeing this is very hard for the families of people who do have the condition, whose experience will be very different.”
So, how is it even possible for specialists to make such a fundamental mistake in their diagnosis?
Experts said that it all boils down to the fact that diagnosing dementia, to begin with, is difficult and an ‘imperfect science’. It shares a wide range of symptoms with other conditions, making it easy to mistake for something else completely.
The tell-tale signs that doctors typically look for are memory problems that gradually get worse over time, a combination of speech problems, trouble with recognising other people or places, and other cognitive issues such as poor concentration.
But depression and anxiety, vitamin deficiencies, thyroid problems, drug side effects, and infections, which affect many older people disproportionately, can also be the culprit for these symptoms.
To this day, no one knows for sure what caused Marian's symptoms. But she suffered several urinary tract infections in the months preceding her diagnosis. She also has a heart condition and is taking pain medications. She suffered from multiple traumatic life events as she lost her first husband of over 50 years and her second husband, Tom. To make things worse, she also lost her youngest son Peter to lymphoma.
Several studies discovered a link between grief and dementia-like symptoms in the elderly.
“Could grief and stress have contributed?” David asked. “Could it have been a mini-stroke? We just don't know.”
Professor Andrews added that while official guidance instructs GPs to disregard other causes of dementia-like symptoms, 'assumptions can be made'.
Another issue is that diagnostic scans and tests for dementia are not 100 percent reliable.
Image Credit: Scripps Health
“When elderly people are confused, something like delirium, or depression, or even being dehydrated, isn't often considered,” she added.
Experts said that the only way they can be certain a patient has the disease is by examining their brain after they have passed.
If a doctor believes a patient has dementia, they will be made to undergo a range of cognitive tests. These tests are designed to measure how well the brain functions. Patients may be instructed to draw a clock, recall random addresses, and answer basic questions such as 'What date is it today?'
Either a GP or a specialist at a memory clinic can administer the tests and will compute a score. If patients reach a certain score, and interviews with family members confirm a decline in cognition, dementia is considered likely.
After this, patients may be referred for a brain scan. However, the early stages of Alzheimer's disease, which makes up a huge chunk of dementia diagnoses, often appear normal in scans.
Doctors can only detect Alzheimer's more accurately when the disease is at its later stages – when a harmful protein called amyloid starts to shrink sections of the brain and damages the brain cells.
The recent calls from the UK government to diagnose Alzheimer's as early as possible hasn't helped the circumstance either, said the experts.
“Memory clinics are increasingly stretched, with limited resources, so there may be a tendency to rush a diagnosis,” explained Professor Howard. “Instead, they should wait more cautiously to check that patients are definitely deteriorating.”
“Clinicians should be especially cautious with patients in their 50s, with suspected early-onset Alzheimer's” adds Prof Howard. “It is incredibly rare for the disease to affect people at this age.”
So if the problem isn’t dementia, then what could be going on?
According to Professor Howard, Functional cognitive disorder is a mental health problem that many aren’t aware of yet – and its symptoms could be mistaken for early-stage dementia, particularly in younger patients.
The disorder affects patients' ability to concentrate, retain information, and recall long-term memories. Some of the symptoms include forgetting a bank card PIN number or a password, struggling to recall facts on the tip of your tongue, or forgetting where you parked your car.
The crucial difference is that Functional cognitive disorder is a problem with how the brain functions, rather than the accumulative loss of brain cells. This means that the symptoms don’t get worse over time.
Treatments for it may include taking antidepressants and a type of cognitive behavioural therapy – to help reduce distress related to memory problems.
“It's about encouraging people not to focus on their worries because we can't change them, and to instead think about all the good and positive things in their life,” said Professor Howard.
For eight years, Alex Preston genuinely believed that he was one of the five percent of patients who develop the condition under the age of 65.
He shared that he 'struggled to focus on anything', including his work at a local water company, and experienced unpredictable mood swings.
Convinced that something was wrong, he consulted his GP, who initially diagnosed him with low mood and anxiety, but referred him to a memory clinic to 'rule out' dementia.
Mr Preston scored borderline on a cognitive test and in turn, specialists referred him for brain scans. He was surprised when the specialist later told him that he had early-onset Alzheimer's.
Mr Preston (above) was falsely diagnosed. Image Credit: DailyMail
“I remember sobbing in the car park with my wife Susan for an hour, trying to get our heads around it,” Alex reminisced. “Susan and I had plans for our retirement. The things we'd been talking about dissipated overnight. And no one survives this.”
“I was convinced I had dementia, and every time I forgot something it was proof to me that the illness was getting worse,” he says.
“Why wouldn't you believe a specialist? I even took pills which, in hindsight, I think made me far more confused. I lived like a person with dementia, writing notes to remind me of things and going to support groups with other patients. I lost confidence and feared for my future.”
Alex campaigned for the Alzheimer's Society and gave talks for doctors on what it was like to live with dementia. Nurses also commented on how well he was doing – but this didn’t do much to ease Alex, who believed that he would 'die a horrible death'.
In 2020, he decided to request another assessment.
“I hadn't seen my dementia nurse for a while and I wanted to know what stage I was at, so I could start planning the end of my life,” he says.
“My friends were also pointing out that I didn't seem to be deteriorating, while people at my support groups were.”
“The hospital arranged for another meeting with a new consultant, who said I should do the cognitive tests again.”
The result? Alex scored a high 90 – way above the threshold for possible dementia.
After a few months passed, he underwent another brain scan and discovered that his brain was perfectly healthy. They also revealed to him that his previous scans showed no signs of the disease.
Earlier this year a consultant finally concluded that he did NOT have Alzheimer’s and that there was absolutely nothing else he had to worry about.
“Other people have contacted me since I went public with my misdiagnosis to say the same thing has happened to them elsewhere.”
Professor Howard and Andrews advised people diagnosed with the condition to consult with their GP if they have not noticed any cognitive deterioration after five years and ask for a reassessment.
“No one is going to be irritated that you haven't got any worse. In fact, they'll be delighted,” reassured Professor Howard.
What are your thoughts on this article? Share them with us in the comments!
Learn more about Alzheimer’s by watching the video below:
Video Credit: TED
Following a series of tests and a brain scan, the specialists came to the conclusion that she had a combination of Alzheimer's and vascular dementia, which develops from reduced blood flow to the brain.
She had already moved to a care home a few months before the diagnosis after raising concerns about her ability to live alone safely. At this point, the family was forced to sell her house and most of her belongings to help cover the expenses.
However, a few months later, something miraculous happened. Marian's cognitive ability had not declined as expected. In fact, it was the other way around. Her paranoia, including delusions about someone stealing her belongings, gradually faded.
To her family's astonishment, Marian 'became herself again'.
Marian's son David explained: “My sister spoke to Mum and told me she seemed to be getting better. She slowly returned to herself – the delusions stopped and she was much more with it.”
In March, an assessment made by social workers confirmed that Marian indeed had the capacity to make decisions for herself and had 'good recall and insight into her needs'.
Marian Wilkinson pictured. Image Credit: DailyMail
Marian was able to recall vivid memories spent on the beach way back in the 1950s. And with similar clarity, she even mentioned her grandson's recent move to meet a girl he met online.
She had also started writing poetry and had just finished reading a collection of Winston Churchill's speeches.
Marian’s case seems to be an impossible turnaround and David insists that it’s probably because it IS too good to be true. He suspects that her dementia had not simply vanished out of thin air – instead, he questions whether the specialists at the Greater Manchester Mental Health NHS Foundation Trust got the diagnosis right.
“Although I understand why they made the diagnosis at the time, in light of the dramatic improvement it seems clear that a mistake has been made,” he explained. “She's been back to normal now for the past few months, asking where her belongings are, and I have to tell her they have gone.”
“We'd just like the mistake to be recognised, so we can understand what happened too.”
Marian's case may come off as staggering, but experts revealed that it is not as unusual as one might think. Over the past few years, hundreds of the UK's leading dementia specialists have begun to voice concerns about patients possibly being misdiagnosed.
Among them is Robert Howard, a professor of old age psychiatry at University College London. He said: “I've seen people who were diagnosed with dementia several years ago and have not gotten worse at all. Some have even gotten better. They clearly don't have dementia.”
Alzheimer’s progression. Image Credit: Everyday Health
“Even if just one or two percent of diagnoses of dementia are wrong, that is still thousands of people every year.”
An estimated 120,000 people in the UK are diagnosed with dementia every year, with Alzheimer's disease being the most common type.
There have been several instances of elderly people becoming very confused in hospitals and doctors immediately diagnosing them with dementia.
Professor June Andrews who has been a dementia nurse for over 30 years and is one of Britain's leading voices in the field shared: “The person then gets sent to live in a care home and their house is sold. But six months later, they are no longer confused and want to go home. But there is no home to go to.”
Experts argued that the inaccurate diagnosis doesn't only lead to life-changing repercussions, it can also be psychologically devastating and lead to people taking unnecessary dementia medication. And to make things worse, it also restricts them from getting the treatment that they actually need to combat the real, unidentified illness causing their symptoms.
The issue followed a month after an independent review was released into mental health services at Leicestershire Partnership NHS Trust.
54 year old Alex Preston, who was a former water treatment specialist, was falsely diagnosed with early-onset Alzheimer's disease for eight years.
Professor Howard knew something had to be done when some patients were able to eloquently speak in public about their ‘disease’.
He stated: “There are people out there giving talks and writing books many years after their diagnosis, and their condition doesn’t appear to have deteriorated at all. Dementia is degenerative – the symptoms get worse over time. I don't doubt these people suffer some cognitive problems, and believe they have dementia. Seeing this is very hard for the families of people who do have the condition, whose experience will be very different.”
So, how is it even possible for specialists to make such a fundamental mistake in their diagnosis?
Experts said that it all boils down to the fact that diagnosing dementia, to begin with, is difficult and an ‘imperfect science’. It shares a wide range of symptoms with other conditions, making it easy to mistake for something else completely.
The tell-tale signs that doctors typically look for are memory problems that gradually get worse over time, a combination of speech problems, trouble with recognising other people or places, and other cognitive issues such as poor concentration.
But depression and anxiety, vitamin deficiencies, thyroid problems, drug side effects, and infections, which affect many older people disproportionately, can also be the culprit for these symptoms.
To this day, no one knows for sure what caused Marian's symptoms. But she suffered several urinary tract infections in the months preceding her diagnosis. She also has a heart condition and is taking pain medications. She suffered from multiple traumatic life events as she lost her first husband of over 50 years and her second husband, Tom. To make things worse, she also lost her youngest son Peter to lymphoma.
Several studies discovered a link between grief and dementia-like symptoms in the elderly.
“Could grief and stress have contributed?” David asked. “Could it have been a mini-stroke? We just don't know.”
Professor Andrews added that while official guidance instructs GPs to disregard other causes of dementia-like symptoms, 'assumptions can be made'.
Another issue is that diagnostic scans and tests for dementia are not 100 percent reliable.
Image Credit: Scripps Health
“When elderly people are confused, something like delirium, or depression, or even being dehydrated, isn't often considered,” she added.
Experts said that the only way they can be certain a patient has the disease is by examining their brain after they have passed.
If a doctor believes a patient has dementia, they will be made to undergo a range of cognitive tests. These tests are designed to measure how well the brain functions. Patients may be instructed to draw a clock, recall random addresses, and answer basic questions such as 'What date is it today?'
Either a GP or a specialist at a memory clinic can administer the tests and will compute a score. If patients reach a certain score, and interviews with family members confirm a decline in cognition, dementia is considered likely.
After this, patients may be referred for a brain scan. However, the early stages of Alzheimer's disease, which makes up a huge chunk of dementia diagnoses, often appear normal in scans.
Doctors can only detect Alzheimer's more accurately when the disease is at its later stages – when a harmful protein called amyloid starts to shrink sections of the brain and damages the brain cells.
The recent calls from the UK government to diagnose Alzheimer's as early as possible hasn't helped the circumstance either, said the experts.
“Memory clinics are increasingly stretched, with limited resources, so there may be a tendency to rush a diagnosis,” explained Professor Howard. “Instead, they should wait more cautiously to check that patients are definitely deteriorating.”
“Clinicians should be especially cautious with patients in their 50s, with suspected early-onset Alzheimer's” adds Prof Howard. “It is incredibly rare for the disease to affect people at this age.”
So if the problem isn’t dementia, then what could be going on?
According to Professor Howard, Functional cognitive disorder is a mental health problem that many aren’t aware of yet – and its symptoms could be mistaken for early-stage dementia, particularly in younger patients.
The disorder affects patients' ability to concentrate, retain information, and recall long-term memories. Some of the symptoms include forgetting a bank card PIN number or a password, struggling to recall facts on the tip of your tongue, or forgetting where you parked your car.
The crucial difference is that Functional cognitive disorder is a problem with how the brain functions, rather than the accumulative loss of brain cells. This means that the symptoms don’t get worse over time.
Treatments for it may include taking antidepressants and a type of cognitive behavioural therapy – to help reduce distress related to memory problems.
“It's about encouraging people not to focus on their worries because we can't change them, and to instead think about all the good and positive things in their life,” said Professor Howard.
For eight years, Alex Preston genuinely believed that he was one of the five percent of patients who develop the condition under the age of 65.
He shared that he 'struggled to focus on anything', including his work at a local water company, and experienced unpredictable mood swings.
Convinced that something was wrong, he consulted his GP, who initially diagnosed him with low mood and anxiety, but referred him to a memory clinic to 'rule out' dementia.
Mr Preston scored borderline on a cognitive test and in turn, specialists referred him for brain scans. He was surprised when the specialist later told him that he had early-onset Alzheimer's.
Mr Preston (above) was falsely diagnosed. Image Credit: DailyMail
“I remember sobbing in the car park with my wife Susan for an hour, trying to get our heads around it,” Alex reminisced. “Susan and I had plans for our retirement. The things we'd been talking about dissipated overnight. And no one survives this.”
“I was convinced I had dementia, and every time I forgot something it was proof to me that the illness was getting worse,” he says.
“Why wouldn't you believe a specialist? I even took pills which, in hindsight, I think made me far more confused. I lived like a person with dementia, writing notes to remind me of things and going to support groups with other patients. I lost confidence and feared for my future.”
Alex campaigned for the Alzheimer's Society and gave talks for doctors on what it was like to live with dementia. Nurses also commented on how well he was doing – but this didn’t do much to ease Alex, who believed that he would 'die a horrible death'.
In 2020, he decided to request another assessment.
“I hadn't seen my dementia nurse for a while and I wanted to know what stage I was at, so I could start planning the end of my life,” he says.
“My friends were also pointing out that I didn't seem to be deteriorating, while people at my support groups were.”
“The hospital arranged for another meeting with a new consultant, who said I should do the cognitive tests again.”
The result? Alex scored a high 90 – way above the threshold for possible dementia.
After a few months passed, he underwent another brain scan and discovered that his brain was perfectly healthy. They also revealed to him that his previous scans showed no signs of the disease.
Earlier this year a consultant finally concluded that he did NOT have Alzheimer’s and that there was absolutely nothing else he had to worry about.
“Other people have contacted me since I went public with my misdiagnosis to say the same thing has happened to them elsewhere.”
Professor Howard and Andrews advised people diagnosed with the condition to consult with their GP if they have not noticed any cognitive deterioration after five years and ask for a reassessment.
“No one is going to be irritated that you haven't got any worse. In fact, they'll be delighted,” reassured Professor Howard.
What are your thoughts on this article? Share them with us in the comments!
Learn more about Alzheimer’s by watching the video below:
Video Credit: TED
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