New report suggests 75 per cent of dementia cases are undiagnosed, with ‘tsunami’ of new diagnoses on the horizon


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TORONTO — Nearly 75 percent of all dementia cases go undiagnosed, according to a new report looking at Alzheimer’s disease and dementia worldwide — and due to advances in treatment and testing, there’s a “tsunami of demand” for diagnosis in the next. ” Might be possible. few years.

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The World Alzheimer’s Report released this week by Alzheimer’s Disease International (ADI) found that the problem was more pronounced in low-income countries, where up to 90 percent of dementia cases have no medical diagnosis.

There are currently half a million Canadians living with dementia, with this number expected to rise to nearly one million by 2030. Canada, which is classified as a high-income country, estimates that 60 percent of its dementia cases go undiagnosed.


But the way dementia is diagnosed and treated is changing, according to Serge Gauthier, a medical neurologist, professor at McGill University and one of the authors of the new report.

“[In] In a relatively short time, two to five years, the diagnosis of dementia will be more biological than it is now,” he explained. in a phone interview. “In other words, within five years, anyone who sees a doctor with dementia-type symptoms will have a blood test that’s almost certain, or a spinal tap.

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“So the next two to five years will be critical because, as we make breakthroughs in diagnosis and causes of dementia, we need equal success for treatment.”

The report, which is more than 300 pages long, goes into intricate details of the diagnosis as well as relatively new innovations in the field, including a blood test to help speed up diagnosis and a new treatment that was approved in the US this year. it was done.

Researchers created the report using an online survey of more than 3,500 physicians, people with dementia and caregivers, as well as personal evidence from people living with dementia in 108 countries, and essays from experts in the field.

The report found that 83 percent of clinicians believed that the COVID-19 pandemic “delays the access of people with cognitive decline to assessment.”

“There was a major setback to access to a COVID-19 diagnosis, where you really need to see someone,” Gauthier said. “So there’s probably a year’s backlog now for people who need evaluations around the world.”

They were able to estimate the amount of people who were potentially going undiagnosed by looking at postmortem rates of dementia as well as historical data collected over the past 10 years by organizations such as the ADI and the World Health Organization, and then Were comparing those numbers. The number of people who actually have a medical diagnosis.

“In other words, [if] You’d expect that one in 10 people over the age of 90 have dementia, but only half of them have a medical diagnosis, which is 50 percent less reporting,” Gauthier explained.

There are many reasons for the lack of diagnosis. Usually, the family knows something is wrong, but they don’t necessarily seek a diagnosis because it is expensive, or because they believe it is unnecessary.

Gauthier said that until now, having an official diagnosis made it clear what type of dementia you had was not as important because there weren’t treatments available that required a diagnosis.

“But now that we have a new class of drugs coming out specific for Alzheimer’s, what matters is what kind of dementia.” [it] is,” he said.

barriers to diagnosis

When Mary-Beth Wighton was first trying to find help for shocking symptoms like mood changes, declining driving ability, and losing track of money, the doctor treated her like she was just making it up.

Another attributed it to “marital troubles”.

Wighton told in a phone interview that it took four years and 12 misdiagnoses before a neurologist gave her a proper diagnosis: she had frontotemporal dementia (FTD).

Dementia refers to symptoms showing cognitive decline, such as problems with memory and executive function, with Alzheimer’s disease being the most common form of dementia. FTD is a type that affects younger patients more, and occurs when there is loss of nerve cells in specific areas of the brain.

Witten, 54, said it’s normal for people with FTD to have a difficult time receiving a diagnosis.

“Because we’re so young, doctors look at us and say, ‘Well, you can’t possibly have dementia,’” she said. “And so there was a medical stigma against which people my age run.”

With FTD, the initial presentation of the disease is not the amnesia that is commonly associated with dementia, she said. Instead, it is difficult for patients to have executive function and decision-making, and there are behavioral changes.

Witten began experiencing cognitive issues nine years ago, when she was in her mid-40s. She spent money without imagining how much she was spending, was more distracted and impatient while driving, and the business she and her partner ran was doing things differently with coworkers.

“I was doing things I wouldn’t normally be doing,” she said. “It was not normal for me to do that.”

But when she asked for help, many doctors didn’t know where to start.

And she said some doctors spoke to her with an “air of arrogance.”

“We were basically told ‘No, I’m the expert. I know what I’m talking about. And you don’t,’” she said.

In the report, 47 percent of people with dementia and their caregivers listed a lack of access to trained physicians as a barrier to diagnosis. Forty-six percent of respondents also chose fear of diagnosis as a barrier, and 34 percent chose cost.

When physicians were surveyed, 37 percent of them said a lack of knowledge was a barrier to making a diagnosis.

And one in three still feels that a medical diagnosis of dementia doesn’t make sense because of a lack of treatment — Gauthier said, adding that there was an improvement in the general attitude of physicians compared to previous years.

Being put through many misdiagnoses is stressful, emotional and can contribute to mental health struggles, but Whitten said there can be other consequences, such as people who have already lost their jobs on the advice of a doctor.

“If you’re on any sort of disability and then you get the diagnosis turned down, it affects everyone. Like, it has a huge impact for people.”

Developing new ways to assess patients

So how difficult is it to diagnose dementia?

One aspect is to look for specific proteins, Gauthier explained.

“There are two major proteins that build up with age in the brain,” he said. “You can see how abnormal they are if you do a spinal tap, so you can measure the fluid in the spinal cord.

“The other way to look at those proteins is with a PET scan. It’s something we’re very good at in Montreal, but it’s very expensive.”

But doctors may be able to measure these proteins just by looking at the blood.

Gauthier explained that over the past five years in Montreal, he has had volunteers with many ages, types and symptoms of dementia receive PET scans, spinal taps, and blood tests.

“And we were able to show conclusively that what you pick up in the blood is related to what you see in the spinal cord and what you see in the brain,” he said. “So we need another study around the world to confirm if this is true elsewhere. And then these blood tests that can be used in daily practice.”

He said it is still considered experimental, but that the labs at McGill and the University of British Columbia are “gearing up for it.”

“I predict maybe two years will be [interval] Where we will measure both blood and spinal fluid, just to make sure we get the same results,” he said. “And then we can move to fair use and clinical practice.”

The tricky part is that these proteins alone do not necessarily mean that a person has dementia – a person in their 90s may have a higher amount of these proteins in their brains as they age, but there are no symptoms of dementia. such as memory loss or difficulty performing tasks in their daily lives.

“There are other factors at play,” Gauthier said.

Diagnosis means looking at all aspects, including physical, emotional and mental symptoms and changes in the patient. These blood tests can help speed diagnosis or certainty of diagnosis, but are not by themselves means.

Gauthier said that as we get older, it’s normal to have memory loss in our 80s and 90s, and for us to rapidly enter rooms without remembering why we went there, or struggle with names. Doing.

The Thres Of Saying “It’s Probably Early Dementia” Is When You Forget To Take The Kids To Daycare Too Much Once [times], you forget where the car is parked once too many [times]You forgot to pay some bills. This is a gray area. When do you forget so much that you should worry about it?”

In the report they suggest that we develop self-tests that can be taken online, so that people can check them annually to test their memory and how they are performing in daily life.

This can help people find out if they are experiencing regular aging, or if some executive function is rapidly disappearing and is something they need to ask their doctor about. Is.

Flood of people in search of new treatment

Gauthier pointed out that with the advent of new treatments that are aimed at specific types of dementia, as the years go by, accurate diagnosis will become more important.

Earlier this year, a new treatment for Alzheimer’s became available in the US – the first of its kind to be approved. Called aducanumab, it is a novel therapy aimed at addressing the underlying cause of Alzheimer’s disease by targeting amyloid beta plaques in the brain. It was given accelerated approval for use by the US Food and Drug…


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