Could The Diagnosis Of Dementia Be Wrong For Thousands Of Britons

It would only get worse, said her family, cracked in her heart. About 120,000 people in the UK are diagnosed with dementia each year – Alzheimer’s is the most common type. In Marian’s case, experts at 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 into a nursing home a few months ago, amid concerns about her ability to live safely on her own. But now it was certain that the family would be forced to sell their house and most of their belongings to pay for the ongoing wages. Marian Wilkinson, 92, who suffered months of forgetfulness, growing paranoia and falls, was told by a specialist that she had dementia – but made an unusual recovery. She is enlightened with her late son Petros However, a few months later, something remarkable happened. Marian’s cognitive ability had not diminished as expected. In fact, it has improved. Gradually the paranoia – including the delusion that someone stole her belongings – disappeared. To the surprise of her family, Marian “became herself again.” Marian’s son, David, 70, says: “My sister talked to my mom and told me she seemed to be getting better. She slowly came back to herself – the delusions stopped and she was much more with her. In March, a review by social workers concluded that Marian had the ability to make decisions on her own and had “good recall and insight into her needs”. A couple of days ago I traveled to meet Marian after David wrote to The Mail on Sunday about her unusual recovery. As she sat across from me in the cafe at the Bolton Garden Center, she remembered the glorious sunny days she spent on Cleveleys Beach in Lancashire in the 1950s. But she spoke with similar clarity about her grandson’s recent move to Texas to meet a girl. met on the Internet. He has also started writing poetry and has just finished reading a collection of speeches by Winston Churchill. Marian is depicted, aged 17 years. Her case looks amazing, but experts say it’s not as unusual as you might think. In recent years, a growing number of leading UK dementia specialists have begun to raise concerns about people being misdiagnosed. It is a remarkable reversal. But David does not believe that her dementia just disappeared. Instead, experts at the Greater Manchester Mental Health NHS Foundation Trust suspect the diagnosis was wrong. “Although I understand why they made the diagnosis at the time, in light of the dramatic improvement, it is clear that a mistake has been made,” he said. “She has returned to normal now in recent months, asking where her belongings are and I have to tell her they are gone. “We would just like the mistake to be acknowledged so that we can understand what happened.” Marian’s case looks amazing, but experts say it’s not as unusual as you might think. In recent years, a growing number of leading dementia specialists in the United Kingdom have begun to express concerns about people being misdiagnosed. One of them is Robert Howard, a senior psychiatry professor at University College London. He says: “I have seen people who were diagnosed with dementia several years ago and have not gotten worse at all. Some have become even better. Obviously they do not have dementia. “Even if only one or two percent of dementia diagnoses are wrong, it is still thousands of people every year.” There have been cases of elderly people being very confused in the hospital and doctors deciding it must be dementia, according to Professor John Andrews, a dementia nurse for more than 30 years and one of Britain’s leading voices in the field. “The person is then sent to live in a nursing home and his house is sold,” he says. “But six months later they are no longer confused and want to go home. “But there is no home to go to.” Experts say that a false diagnosis not only has a life-changing effect, making people live with the death penalty or taking unnecessary medication for dementia, but denies them treatment for the true disease that causes their symptoms. The concern comes a month after an independent review of mental health services at the Leicestershire Partnership NHS Trust began after Alex Preston, 54, a former Anstey water treatment specialist, was misdiagnosed with early Alzheimer’s disease for eight years. . Professor Howard has raised doubts about the diagnosis of some patients who speak eloquently in public about their illness. He says: “There are people out there who talk and write books many years after the diagnosis, who do not seem to have gotten worse at all. Dementia is degenerative – the symptoms get worse over time. I have no doubt that these people have some cognitive problems and think they have dementia. “To see this is very difficult for the families of people who have the condition, whose 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 lies in the fact 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 it is. The first signs that doctors look for are memory problems that have worsened over time, combined with speech problems, problems recognizing other people or locations, and other difficulties including poor concentration. However, depression and anxiety, vitamin deficiencies, thyroid problems, drug side effects and infections – which affect many older people – can also be responsible for these symptoms. Alex Preston (above) was misdiagnosed as having early-onset Alzheimer’s disease. For eight years, he was believed to be one of the 5% of patients who develop the condition under the age of 65. The 63-year-old from Anstey, Leicestershire, was diagnosed at a memory clinic in Leicester in 2014, when he was just 54 The hallucinations and delusions that are common to 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 delirium, in which anesthetics and unfamiliar clinical settings cause severe confusion and anxiety, including delirium, also affects up to 70 percent of elderly patients. It is not clear what caused Marian’s symptoms. However, she suffered from several urinary tract infections in the months before her condition worsened and she has heart disease and is taking painkillers. She also had many successive mournings – she lost Gordon, her first husband for more than 50 years, and her second husband, Tom, in a decade, and she also lost her youngest son, Peter, to lymphoma. Studies have linked sadness and anxiety to confusion and dementia-like symptoms in the elderly. “Could grief and stress have contributed?” says David. “Could it be a mini-stroke?” We just do not know. “ Professor Andrews says that while formal guidelines guide GPs to rule out other causes of dementia-like symptoms, “assumptions can be made”. The other challenge is that diagnostic scans and tests for dementia are not 100 percent reliable. “When the elderly are confused, something like delirium, or depression, or even dehydration, is not often considered,” he adds. In fact, experts say the only way to make sure a patient has the disease is to examine their brain after it dies. 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 design a clock face, recall random addresses, and answer key questions such as “What date is it today?” Either a general practitioner or a specialist in a memory clinic can handle the exams and calculate a score. If patients reach a certain limit and interviews with family members confirm a decline in cognitive function, dementia is considered possible. At this point, patients may be referred for brain scans. But in the early stages of Alzheimer’s disease – which accounts for 60-80 percent of dementia diagnoses – scans often seem normal. Only in advanced disease can doctors detect the possible features of Alzheimer’s – an accumulation of a harmful protein called amyloid, shrinking parts of the brain, and damage to brain cells. Brain scans can also determine if patients have less common types of dementia. This includes frontal temporal dementia, which mainly affects areas involved in personality, or vascular dementia, which is caused by a stroke. The recent push by the government to diagnose Alzheimer’s as early as possible did not help, experts say. The government’s dementia strategy was launched in 2009 in an effort to catch the disease early and treat it with new drugs, which are more effective if given in the early stages. This is crucial, as many do not see a doctor until their dementia has progressed and the medication will not work either. Since then, the number of patients referred to memory clinics in England has risen by at least a third, according to research by Imperial College London. However, it is much more difficult to accurately diagnose dementia in its early stages, increasing the risk of errors. “Memory clinics are becoming more and more extensive, with limited resources, so there may be a tendency for early diagnosis,” says Professor Howard. “Instead, they should wait more carefully to check that patients are definitely getting worse.” So if it is not dementia, what else could happen? Functional cognitive impairment is a mental health problem that few experts have heard of, according to Professor Howard, but a problem that could be mistaken for early-stage dementia, especially in younger …