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

TORONTO — According to a new report looking at Alzheimer’s disease and dementia worldwide, around 75 per cent of all dementia cases are undiagnosed — and due to advancements in treatments and testing, there could be a “tsunami of demand” for diagnosis in the next few years.

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

Currently half a million Canadians live with dementia, with that number expected to increase to almost one million by 2030. Canada, which is classified as a high-income country, is estimated to have 60 per cent of its dementia cases undiagnosed.

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

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

“So the next two to five years will be critical because, as we made breakthroughs in diagnosis and the cause of dementia, we need to have equivalent breakthroughs for treatment.”

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

Researchers created the report using online surveys of more than 3,500 clinicians, people with dementia and caregivers, as well as personal testimonies from people with dementia across 108 countries and essays from experts in the field.

The report found that 83 per cent of clinicians believed that the COVID-19 pandemic “delayed access of people with cognitive decline for assessment.”

“COVID-19 was a big blow to access to diagnosis, where you need to really see someone in person,” Gauthier said. “So there’s a backlog now probably of a year for people in need of an assessment worldwide.”

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

“In other words, [if] you expect one out of 10 of people over age 90 to have dementia, but only half of them have a medical diagnosis, that’s 50 per cent underreporting,” Gauthier explained. 

There are a number of reasons for a lack of diagnosis. Usually, the family does know that something is wrong, but they don’t necessarily seek diagnosis due to it being expensive, or due to them believing it’s unnecessary.

Gauthier said that until now, having an official diagnosis that explained what specific type of dementia you had wasn’t as crucial because there weren’t treatments available that required a diagnosis to access.

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

THE BARRIERS TO DIAGNOSIS

When Mary-Beth Wighton was first trying to find help for baffling symptoms such as mood changes, a dip in driving ability and losing track of money, a doctor treated her as though she was simply making it up.

Another blamed it on “marital troubles.”

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

Dementia refers to symptoms showing cognitive decline, such as issues 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 a loss of nerve cells in specific regions of the brain.

Wighton, who is 54, said it was typical for people with FTD to have a difficult time receiving a diagnosis.

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

With FTD, the initial presentation of the disease isn’t the forgetfulness that is more commonly associated with dementia, she said. Instead, executive function and making decisions are harder for patients, and there are behavioural changes as well.

Wighton started experiencing cognitive issues around nine years ago, when she was in her mid-40s. She spent money without being able to conceive of how much she was spending, was more distracted and impatient when driving, and was acting differently with coworkers at the business she and her partner ran.

“I was doing things that I wasn’t normally doing,” she said. “That wasn’t a normal thing for me to do.”

But when she sought 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 per cent of people with dementia and their caregiverslisted a lack of access to trained clinicians as a barrier to diagnosis. Forty-six per cent of respondents also selected fear of diagnosis as a barrier, and 34 per cent selected cost.

When clinicians were surveyed, 37 per cent of them said that a lack of knowledge in making a diagnosis was a barrier.

And one in three still feel there is no point in a medical diagnosis of dementia because of the lack of treatment — something Gauthier said was an improvement in the general attitude of clinicians compared to previous years. 

To be put through numerous misdiagnoses is stressful, emotional and can contribute to mental health struggles, but Wighton said there can be other repercussions, such as people having already quit a job on the advice of a doctor.

“If you’re on any kind of disability and then you get a diagnosis revoked, well, that affects all of that. Like, it has huge ramifications for people.”

DEVELOPING NEW WAYS TO ASSESS PATIENTS

So how difficult is it to diagnose dementia?

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

“There’s two key proteins that build up with age in the brain,” he said. “You can have a glimpse of how abnormal they are if you do a spinal tap, you can measure in the spinal fluid.

“The other way to see those proteins is with PET scans. This is something that we’re very good at it in Montreal, but it’s very expensive.”

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

Gauthier explained that over the past five years in Montreal, they have been having volunteers with a range of ages, types of dementia and symptoms receive PET scans, spinal taps and blood tests.

“And we were able to show conclusively that what you pick in the blood correlates with what you see in the spinal fluid and what you see in the brain,” he said. “So we just need one more study worldwide to confirm if this is true elsewhere. And then these blood tests that could be used in daily practice.”

He said this is still considered experimental right now, but that labs in McGill and also the University of British Columbia are “gearing up for this.”

“I predict there’ll be maybe a two-year [interval] where we will measure both blood and spinal fluid, just to be sure we get the equivalent results,” he said. “And then we can go into a proper use and clinical practice.”

The tricky part is that these proteins alone don’t mean that a person has dementia — a person in their 90s may have a lot of these proteins in their brain due to old age but have no symptoms of dementia such as memory loss or difficulty functioning in their day to day life.

“There’s other factors at play,” Gauthier said.

A diagnosis means looking at all of the facets, including physical, emotional and mental symptoms and changes in the patient. These blood tests could help speed diagnosis or certainty of diagnosis, but don’t mean anything all on their own.

Gauthier said that as we grow old, it’s normal for memory to slip in our 80s and 90s, and for us to increasingly enter rooms without remembering why we went there, or struggle with names.

“The threshold towards saying ‘this is perhaps early dementia’ is when you forget to pick up the kids at daycare once too many [times], you forget where the car is parked once too many [times], you forgot to pay some bills. It’s a gray area. When do you forget enough that you should worry about it?”

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

This could help people track if they are experiencing aging at a regular pace, or if certain executive functions are disappearing faster and are something they need to ask their doctor about.

A FLOOD OF PEOPLE SEEKING NEW TREATMENTS

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

Earlier this year, a new treatment became available in the U.S. for Alzheimer’s — 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 an accelerated approval for use by the U.S. Food and Drug Association under the understanding that more studies would be completed.

Gauthier said Canada could follow suit within the next two years.

Other drugs that target the specific proteins that serve as biomarkers for dementia are being tested, and Gauthier expects two or three to be approved in Canada within three years.

Gauthier said no country is ready for the coming influx of patients seeking dementia diagnosis in the next few years.

“Even the U.S. says, not enough family doctors that are trained to do the diagnosis in mild stages and disclose and manage,” he said. “There’s not enough specialists, especially neurologists, in any country right now.”

He said that with medications beginning to be approved, “there’ll be more demand by people with mild symptoms to get a diagnosis.”

It’s imperative that the health-care system takes the next couple of years to “gear up” before this wave of new patients seeking diagnosis hits in full force, he said, adding that the new blood tests can help screen people to see who should be referred to a specialty clinic.

EDUCATING THE PUBLIC — AND DOCTORS

During their research, Gauthier said they found that a significant complaint from patients was how little had been explained to them in the diagnosis process.

Patients don’t just want to be given a prescription or referred to an Alzheimer’s organization for their questions, they want their doctor to explain what they should expect in the next five or ten years.

Only 45 per cent of respondents with dementia and their caregivers reported that they felt they were “given adequate information at the point of diagnosis.”

“People expect more from the disclosure than just diagnosis,” Gauthier said. “So that’s a message we got loud and clear from everyone around the world who’ve been through the process.

“Don’t let people go with just saying ‘good luck.’ That’s unacceptable.”

That’s a familiar issue for Wighton.

“The doctor really didn’t tell us anything about it. She handed me a pamphlet and said ‘the Alzheimer’s society is your best resource’,” Wighton said.

When Wighton got her official diagnosis of FTD, she couldn’t comprehend it right away.

Instead, her eyes went to the next line of the handout she’d been given — where it told her that, effective immediately, she couldn’t drive, even though she had driven to the appointment that day.

“So it was like two kicks in the stomach at once. And the one that hurt the most right at that very moment was the driving line,” she said. “Because I couldn’t grasp immediately what the diagnosis of the dementia was, but I could grasp what losing that license meant.”

Doctors need to receive more training to improve diagnosis, she said.

“Whoever is providing a diagnosis has to be better educated than we are right now in Canada,” she said.

Gauthier agreed, saying that teaching about dementia in medical school should be increased.

“So whatever specialty, including family practice, you’re in, you’ll know about dementia,” he said, adding that the staff currently working in the health-care system also need training in the short term, which is something next year’s report will look into more fully.

LIFE AFTER DIAGNOSIS

Wighton is 54 years old now, and is a huge advocate for others with dementia, working as the co-chair of Dementia Advocacy Canada as well as internationally through ADI.

She said she wants to fight the stigma that keeps people from seeking a diagnosis in the first place.

Many people are scared of developing Alzheimer’s or dementia, and so may avoid going to the doctor when they start experiencing cognitive issues.

“It’s better to be ahead of it than behind it, because if you’re ahead and you get that diagnosis earlier, then you can start to develop strategies and plans,” Wighton said.

A dementia diagnosis isn’t the end.

“It’s important for people to know that you can live a good life with dementia,” she said. “Just because you get a diagnosis, it doesn’t mean that everything stops. It’s just a diagnosis. Now you’ve got to get busy living.”

She said that it is important to remember that you don’t lose your abilities all at once, and you have time.

“Many people, including medical professions, they go straight to the end of diagnosis. And that’s how they envision you. And they forget all those years that you potentially could be living a really good life.”

Wighton was also part of a group that helped in 2018 to develop the National Dementia Strategy Plan for Canada, a plan that she doesn’t want forgotten. The plan included a $50 million commitment over five years, set to start in 2019-2020, and was to increase awareness of dementia, develop treatment guidelines and invest in research.

“The lack of implementation for Canada’s plan is hurting us, hurting literally all Canadians, ’causeit’s a good plan,” Wighton said.

She said that Dementia Advocacy Canada met with federal Health Minister Patty Hajdu a few months ago to discuss where the implementation of the plan was at, and she’s hoping to see more movement soon.

They need to “act on it,” she said.

“What are the recommendations? How do we move forward? And we have to put money to that.”

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