Marian Wilkinson’s situation will be painfully familiar to families across the country. After the 92-year-old man suffered months of oblivion, growing paranoia and falls, a specialist issued an almost predictable verdict: Marian had dementia.
It would only get worse, he told his heartbroken family.
About 120,000 people are diagnosed with dementia each year in the UK, with Alzheimer’s being the most common type.
In Marian’s case, specialists at the Bolton Memory Clinic concluded that she had a combination of Alzheimer’s and vascular dementia, which is caused by reduced blood flow to the brain, after a series of tests and a brain scan. .
She had already moved to a nursing home a few months ago, amid concerns about her ability to live alone safely. But now it was certain that the family would be forced to sell their house and most of their belongings to help pay the ongoing fees.
Marian Wilkinson, 92, who suffered months of forgetfulness, growing paranoia and falls, was told by a specialist that she had dementia, but recovered unusually. He is photographed with his late son Peter
However, a few months later, something remarkable happened. Marian’s cognitive ability had not diminished, as expected. In fact, it improved. Gradually, the paranoia — including delusions about someone stealing his belongings — disappeared.
To her family’s surprise, Marian ‘became herself again’. Marian’s son David, 70, says: “My sister talked to her mother and she told me she seemed to be getting better. much more with that.
In March, a social worker assessment concluded that Marian had the ability to make decisions for herself and had “a good memory and a vision of her needs.”
Fifteen days ago I traveled to meet Marian after David wrote to The Mail on Sunday about her unusual recovery.
As he sat in front of me in the Bolton Garden Center cafeteria, he remembered the glorious sunny days spent on Cleveleys Beach in Lancashire in the 1950’s. But with similar clarity, he explained his grandson’s recent move to Texas, to meet a girl he met online. He has also started writing poetry and has just read a collection of speeches by Winston Churchill.
The photo shows 17-year-old Marian. His case sounds surprising, but experts say it’s not as weird as you might think. In recent years, a growing number of leading dementia specialists in the UK have begun to express concern about people’s misdiagnosis.
It’s a remarkable twist. But David does not believe that his dementia has simply disappeared. Instead, he suspects Greater Manchester Mental Health NHS Foundation Trust specialists were misdiagnosed.
“While 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 says. “It simply came to our notice then.
“We would like the mistake to be acknowledged so that we can also understand what happened.”
Marian’s case sounds surprising, but experts say it’s not as weird as you might think. In recent years, a growing number of leading dementia specialists in the UK have begun to express their concerns about people being misdiagnosed.
One is Robert Howard, a professor of psychiatry in old age at University College London. He says: “I’ve seen people who were diagnosed with dementia a few years ago and they haven’t gotten any worse. Some have even improved. Clearly they don’t have dementia.
“Even if only one or two percent of dementia diagnoses are incorrect, there are still thousands of people each year.”
There have been cases of elderly people who have become very confused in the hospital and doctors who have decided that it must be dementia, according to Professor June Andrews, a dementia nurse over 30 years old and one of the leading voices of the United Kingdom in this field. “Then the person is sent to live in a home and their house is sold,” he says. “But six months later they are no longer confused and want to return home. But there is no house to go to.
Experts say that misdiagnosis not only has life-changing repercussions, causing people to live with a death sentence or taking unnecessary medications for dementia, but also denying them treatment for the real disease that causes their symptoms.
Concern comes a month after an independent review of mental health services was launched at the Leicestershire Partnership NHS Trust, after Alex Preston, 54, a former Anstey water treatment specialist, was misdiagnosed with early-onset Alzheimer’s disease for eight years. .
Professor Howard has raised doubts about the diagnosis of some patients who speak eloquently in public about their disease. He says: “There are people out there giving talks and writing books many years after the diagnosis, which doesn’t seem to have deteriorated at all. Dementia is degenerative: the symptoms get worse over time. I have no doubt that these people have some problems. “It’s very hard for the families of people who do have the disease, and their experience will be very different.”
So how is it possible for doctors to make such a fundamental mistake in their diagnosis?
Experts say the problem is that diagnosing dementia is an imperfect science. The condition shares a wide range of symptoms with other conditions, making it difficult to determine what dementia is and what else.
The first signs that doctors look for are memory problems that have gotten worse over time, combined with speech problems, problems recognizing other people or places, and other difficulties, including poor concentration.
But depression and anxiety, vitamin deficiencies, thyroid problems, medication side effects, and infections, which affect many seniors, may also be responsible for these symptoms.
Alex Preston (above) was misdiagnosed as having early-onset Alzheimer’s disease. For eight years, he believed he was one in 5% of patients who developed the disease under the age of 65. The now 63-year-old from Anstey, Leicestershire, was diagnosed at a memory clinic in Leicester in 2014 when she was only 54 years old.
Hallucinations and delusions, which are common in some types of dementia, can also be caused by urinary tract infections. These infections affect three out of ten people over the age of 85 each year. Hospital-acquired delirium, in which anesthetic drugs and unfamiliar clinical settings trigger severe confusion and anxiety, including delusions, also affects up to 70% of elderly patients.
It is unclear what caused Marian’s symptoms. But she suffered several urinary tract infections in the months leading up to her deteriorating condition, has heart disease and is taking painkillers. She also had several grievances in a row: she lost Gordon, her first husband over 50, and her second husband, Tom, in a decade, and she also lost her young son Peter to lymphoma.
Studies have linked grief and stress to confusion and dementia-like symptoms in the elderly. “Could pain and stress have contributed?” says David. ‘Could it have been a mini-stroke? We just don’t know.
Professor Andrews says that while official guidelines tell GPs to rule out other causes of dementia-like symptoms, “assumptions can be made”. The other challenge is that diagnostic scans and dementia tests are not 100% reliable. “When the elderly are confused, it is not often considered something like delirium, depression or even dehydration,” he adds.
In fact, experts say the only way to make sure a patient has the disease is to examine their brain after they die.
If a doctor suspects dementia, patients will complete a series of cognitive tests: tasks designed to test brain functions such as spatial awareness, language, and memory. Patients may be asked to draw a clock, remember random addresses, and answer basic questions such as “What date is today?”
A GP or a memory clinic specialist can administer the tests and calculate a score. If patients reach a certain threshold and interviews with family members confirm a decrease in cognition, dementia is considered likely.
At this point, patients may be referred for brain scans. But in the early stages of Alzheimer’s disease, which accounts for 60 to 80 percent of diagnoses of dementia, scans often seem normal.
Only in advanced diseases can doctors detect possible features of Alzheimer’s: an accumulation of a harmful protein called amyloid, reduced sections of brain matter, and damage to brain cells.
Brain scans can also determine if patients have less common types of dementia. This includes frontal temporary dementia, which mainly affects the regions involved with the personality, or vascular dementia, caused by a stroke.
According to experts, the government’s recent push to diagnose Alzheimer’s as soon as possible has not helped.
The government’s dementia strategy was launched in 2009 with the aim of detecting the disease early and treating it with new drugs, which are more effective if given in the early stages. This is crucial as many do not visit the doctor until their dementia has progressed and the medication will not work as well.
Since then, the number of patients referred to memory clinics in England has risen by at least a third, according to research from Imperial College London.
However, it is much more difficult to make an accurate diagnosis of dementia in its early stages, increasing the risk of errors.
“Memory clinics are becoming more widespread, with limited resources, so there may be a tendency to rush a diagnosis,” says Professor Howard. “Instead, they should wait more carefully to check that patients are definitely deteriorating.”
So if it’s not dementia, what else could be going on?
Functional cognitive impairment is a mental health problem that few experts have heard of, according to Professor Howard, but which could be confused with early stage dementia, especially in younger children …