Global Challenges in Dementia Diagnosis: A Deep Dive into ADI’s World Alzheimer’s Report 2021

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Dr. Nathaniel Chin: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

My guest today is Dr. Serge Gauthier, clinical neurologist and professor emeritus of neurology and psychiatry at McGill University in Montreal, Canada. He serves as an academic co-lead of the Dementia Education Program at McGill University and previously served as the director of the Alzheimer's Disease and Related Disorders Research Unit in the Mcgill Center for Studies in Aging from 1986 to 1997. His work has focused on the development of new tools for diagnosing and treating people living with Alzheimer's disease. Professor Gauthier is a co-author of the 2021 World Alzheimer's Report for Alzheimer's Disease International titled, “Journey through the diagnosis of dementia.” The report highlights the challenges people face when seeking out a dementia and/or Alzheimer's disease diagnosis, as well as government recommendations and clinical improvements. Focused on increasing diagnosis accessibility, the report found that roughly seventy five percent (75%) of people with dementia globally, or forty one million people, are undiagnosed due to a variety of factors including stigma, long wait times, and other challenges amidst this pandemic. Here to talk to us about the ADI’s report and how we can improve the diagnosis process is Professor Serge Gauthier. Dr. Gauthier, welcome to Dementia Matters. To start, how did you get into this field and why dementia?

Dr. Serge Gauthier: Thank you for asking. I was a neurologist specializing in movement disorders, initially Parkinson's disease in particular. But one day, a young woman comes in, age 33 with her two teenage daughters and her husband and she had early onset dementia. I didn't know about that because it was not taught in medical school in those days. The other thing that happened the same year was a colleague psychiatrist who was looking for a neurologist to help him test choline and lecithin as sort of food supplements for mild dementia. And then I got involved into the treatments of Alzheimer's and I switched from being a neurologist full-time to being a hybrid geriatricitionian like you, psychiatrist and neurologist taking care of persons with dementia.

Chin: Well, and now here we are today with this immense report that you've been a part of and led. Before we get to the actual report which really has some incredible findings, I'd like to discuss how you actually collected this data. So I think it's important for our audience to know the process, and so if you don't mind sharing with us the methodology.

Gauthier: Thank you for asking because the method had to fit the needs of Alzheimer's Disease International which is an umbrella organization for 107 countries including the US. We had to survey as many of these countries as possible. So 3 surveys were run concurrently and we had 1111 clinicians from 108 countries answering. We'll get back to some of their comments. We had 205 persons living with dementia and 2122 carers, so that's close to 2500 lay-people so to speak, from 83 countries and 101 out of the 107 Alzheimer’s Associations answered. These surveys were run from March to July and during that time we invited essays so we had over - thinking through what is needed for diagnosis right now and in the near future - we thought up specific topics where we need expert advice. For instance, biomarkers - how to use them in primary care, as an example. So we have 52 of those essays involving 113 orders. So as you see it's an involved process. It had to be done within 6 months because September 21st is always the date of these reports. The next one for next September 2022 will be on management after diagnosis.

Chin: This is an immense task because you have surveys for lots of people, you have essays from lots of specialists. To be able to not only collect this data but then collate it for, you know, an audience to be able to read it, it must have taken a huge team.

Gauthier: No, there were four of us. (laughs) and support staff. But if you have dedicated people with well-outlined plans - if people want to do something like that, I'll give you advice. Think of what you want to write, divide it up in sections that make sense - so we have six parts including Visions to the Future - and assign each chapter to one of the co-authors as lead and it did work out.

Chin: So you had structure. And, for our audience we're going to have a link at the bottom of the website and we'll make sure to insert it into this podcast towards the end as well so that you can go to that document - and it's over three hundred pages when I looked at it, so it's a pretty intensive and comprehensive report. With that then, what are some of the key findings from the report that you took away?

Gauthier: So there's the messages from the public at large. So roughly 45 percent of people who had a diagnosis said, “We wish we had more information given at the time of diagnosis.” That was something we expected. And on the clinician side, asked the same question, they acknowledged they didn't have enough time. Some of them, but not as many as we thought, felt uncomfortable with disclosure of diagnosis for fear of a catastrophic reaction. On the other side of the table, people who go for assessment also are afraid of diagnosis and what stigma could come out of it. Good news though! We found that clinicians are very much interested in blood tests that could help in the diagnosis once you have symptoms. And they're open even to using online algorithms where you could enter data collected with an individual person and the algorithm with a huge database can help you with the probability score. So it's still work in progress but that's coming. And one other surprise finding is that clinicians, as well as the public at large, are open to remote testing. So one of the things about COVID is we had to switch to online Zoom-like followup with patients we knew. It did work out quite well and we did some memory tests like the Mini Mental State Examination online and now there's a whole field of neurology moving into remote assessments including physical assessments to some degree. So, that's good because it means we can reach out to people living in rural regions, outlying regions around the world.

Chin: And that's such an important part or a silver lining, I would say, of the pandemic is it has really ushered in a time of reaching people who previously were disadvantaged and did not have access to the type of specialists, such as yourself and other geriatricians. But you did talk about stigma and I think that's an important concept so I'd like to spend a couple minutes on that. You know, stigma among healthcare providers was really identified in this report as a key barrier. What exactly did you find and why is that important in the discussion of diagnosis and subsequent care?

Gauthier: So the question that was asked specifically to clinicians was, “What are, in your experience and in your view, the barriers?” And indeed, one third said they thought it was not worth it, there was no specific treatment yet. But it's not what they think personally, it's what they think is a barrier. So let's clarify that because when you read the report, it's a bit misleading. But most clinicians who answered - and I remind you it's over 1,000 from 108 countries - were, to my surprise, more open about disclosure than I thought. And if the person with the symptoms asks a direct question, we should give an honest answer - which may be, “I don't know what you have right now, but we will do complimentary testing and we'll talk about it again,” or it may be, “I think you have mild dementia. I'm not sure of the cause. We can do more tests if you wish and we'll talk about it.” But what's missing is a prescription of care. What do you give people when they leave the office? And that's something we're working on now.

Chin: And so your report really identifies two areas that I just took, and you really reaffirmed in your answer. One is the stigma that - this misperception that nothing can be done, because certainly as geriatricians, neurologists like yourself, we know that there are things that can be done that are not medication-based. But also a lack of confidence in the diagnosis itself, in the disclosure, and that is a huge issue for people who are wanting to know what is happening to me, why am I having these symptoms. So what do you suggest? How can people encourage the healthcare system to have better practices in place so that we can get to a diagnosis?

Gauthier: So there's likely a lot of variation between regions and states and countries indeed. So I knew you would ask and I was thinking, what can I suggest to people who are listening? Well, talk to your family doctor, first thing. If you don't have one, get one - which is an issue we have in Quebec. Don't wait till you have symptoms that are really leading to mistakes in your work or your daily life and then you get the neighbors or your family members to worry. On the other hand, we all forget with age, so let's not get carried away. There's a gray zone, plenty of years between benign forgetfulness and dementia and hopefully the diagnosis will allow us to perhaps detect some of these disorders before they reach the stage of dementia. But that's something for the near future. Education is for the public as well, not just the clinicians. So let's talk about the clinicians first. This is something we're going to work on this year for the next report: “What can we teach in medical school, in residency training programs and allied health professional training  programs about the needs of persons living with dementia and their families?” That's something we commit to do. As far as the public at large, well, they're listening to you. Good for you. That's the first step in taking control.

Chin: Education awareness training. I mean, these are key things and this takes a lot of time though. And so I appreciate - you're right that there are many different ways for people to learn this information, both on the clinical side and in and in the lay public - but I appreciate these types of reports coming out really reaffirming the gap and that we need to address this. And I look forward to what you guys - your team, I should say - finds in the next year as far as what to do next after a diagnosis. 

Gauthier: And we'll talk about it next fall.

Chin: Wonderful. We'll have you on next fall as well then. Now your report also covers some pretty advanced technology and how to potentially include that in a diagnosis, and people are more comfortable with that type of data and testing. So what role do PET scans and blood-based biomarkers play really in this effort for more diagnoses? And then, after that answer, should everyone get these things?

Gauthier: Okay, this is actually easy to answer for me because - for the average person with mild dementia over age seventy, all you need is a CT scan or MRI of the brain and that's it. It's really to look for unusual causes of cognitive impairment, such as brain tumors, too much water in the brain, small strokes, big strokes etc. Now, you don't need blood tests, other than to exclude diabetes and other disorders, but there's no currently specific blood tests for Alzheimer' like conditions. And PET scans with lignans looking at amyloid/Tau inflammation are still experimental. But that's changing quickly if we have medications that are specific for amyloid, where you need to demonstrate the person indeed has an amyloid load in their brain. So we're just now at the interface because there's a new class of drug coming that may take away the amyloid buildup in the certain stage of illness where this matters and then you will need this extra test, such as a spinal tap looking at the levels in the spinal fluid of these key proteins or a PET scan looking at one of these proteins.

Chin: And actually so that led to one of my other questions which was, recently in the United states there was an FDA approval of one of those therapies called aducanumab which is designed to remove amyloid from the brain. There's a lot of debate about it now as to the actual clinical benefit of that - the value to a human person who's experiencing symptoms. But how do you think these types of therapies - and there's more coming down the pipeline - how are they going to change how we view diagnosis, the accuracy of diagnosis, or how sensitive tests need to be in providing a diagnosis?

Gauthier: So this is a landmark event, these specific medications that act on one of the protein buildup in the brain we associate with Alzheimer's disease. If we use one of these drugs, we need to be sure the person actually has the amyloid buildup. So the diagnosis will have to be more biologic than just clinical as it is now. There will be some issues - 1 in 10 people we say has Alzheimer's disease we don't find amyloid in their brain, so we're not sure what to call it. It's Alzheimer's without amyloid so it's Tau or M inflammation or some other protein at play. The other thing is these medications appear to work better if it's given very early in the course of the disease. We're talking about mild cognitive impairment or early dementia, so people would have to come for diagnosis earlier than they do now when many times they wait for behavioral changes or interference with daily life that is significant like driving alone, etc, which may be too late for that particular kind of medication. Fortunately, there's other medications being tested that would act on Tau, the other protein buildup in the brain, and this may be more relevant to people who have mild to moderate dementia. So we may be at the cusp of stage-specific therapies - a bit like cancer - where you would use a kind of medicine for the first stage of disease, another kind for another stage. So this is a turning point, and we have thinkers like Jeffrey Cummings and others in the US who are putting together clinical practice guidelines for such medications. This is the start of reorganization, also, of healthcare because we don't have enough specialists like you and me to see everyone who may be a candidate for therapy. We may need to train family doctors and other health professionals to do some kind of screening for mild dementia and then, is this the kind of mild dementia that would be Alzheimer's disease, and then you see a specialist and maybe start treatment.

Chin: And I'm going to ask you a question about screening in a minute but before I get to that one - your report also has really nice recommendations for government agencies or kind of the bigger system as well as clinical recommendations. What do you think are some of the key, just overall recommendations coming out of this report?

Gauthier: Well, for the governments there's a WHO, World Health Organization, program that asks them to have some kind of registry - without the names of people obviously - but the registry to see how many people seek diagnosis, how many people have a diagnosis of dementia. We need these numbers to compare with what we think, out there, are undiagnosed people which would be very high indeed - seventy five percent in some countries, possibly. Not so much in the US and Canada but it's still a lot of people. So, at the high level governments need to have general health policies. I won't talk about prevention today because that's not the purpose of this report, but we will next year because health prevention through midlife, taking care of your heart, your blood pressure, staying in shape is clearly the best way to go at the government and society level to prevent dementia. But once you have symptoms, then we have to think of how best to assess the individuals. I'm dreaming of, you do it online first, some kind of self-screen. If you have a certain score, you go to another level of screen which would be with a health professional, not necessarily a family doctor. And then you go see a family doctor and if in some circumstances you go to a specialist. We need some kind of a healthcare system, that way to really reach everyone that needs a diagnosis and eventually treatment.

Chin: Yeah, that system makes sense to me. For those that are able to access the internet and able to do that kind of testing or something that is at their own home would be very beneficial in reaching all people. That also may help with some of the stigma so that people can address these things in their own space. But you also in this report - I don't want to say you - the report also recommends screening for cognitive impairment. Just general screening. I think you said at the age of 50, but most agencies and certainly here in the United states, that is not a standard recommendation. In fact, it's not recommended to screen for people. Is that a mistake and if you think it is, how do we get policy to change?

Gauthier: So, I agree with you that policies and all countries I'm aware of do not ask for self-screen or screening with a clinician at any age. It was tried in the UK at age 65 and it was a disaster. You need to have symptoms to justify cognitive assessment. So the message has been among clinicians, if you hear someone or the family says there's been a decline in the past year in memory or some mistakes in instrumental activities of daily living, you should probe further even if you require a second visit and do your memory tests, the MMSE, the MOCA, whatever. I agree with you totally that you don't screen people who have no symptoms at all at any age right now.

Chin: And then what role do you think specialists or memory centers and certainly community agencies who you interviewed, what role do they play in improving the diagnosis? And in essence what I'm getting at is - is this a primary care focus that we should have or do we need to train more specialists or more community organizations to help with diagnosis?

Gauthier: All three. We need to work on all three levels indeed. And so there's a cost factor - how many people you train, but my hope is that there will be an interest because of new treatments, because of sheer number of people - us baby boomers are coming forward now at the age where we will have kind of cognitive complaints - so there will be a demand. If there's a demand, there are usually opportunities for people, either private or public, to answer the demand. Remote assessment and algorithms may accelerate the process. The thing about self-testing every year starting at age 50 - there was just, someone suggested that. That was more to provoke discussion, not as a policy. Maybe a bit like having your blood pressure checked or your cholesterol checked or some other markers for potential disease that's evolving silently. And if you have a decline in whatever measure you have on the yearly basis, then you should have further testing. I think that was the general intent, but it's not something practical we can initiate now.

Chin: And certainly on this podcast we've had on specialists and experts in biomarkers who have really explained that you can have changes of Alzheimer's disease in your brain for decades before having any symptoms. And if eventually there may be interventions for these individuals, certainly you'd have to be doing screening in healthy people, so I think you bring up a really good point and the report really just identifies - earlier, the better - and so people can be evaluated or at least think about how they're performing. At a certain point, that seems like a reasonable thing for us to just be reflective of. One of the things that's of  personal interest to me and with your report that is international, and truly international covering so many different countries, is that we use different terms when it comes to cognition and memory and thinking and certainly the diagnosis of dementia. And as a geriatrician that's the term I use, but my psychiatry colleagues will say Major Neurocognitive Disorder and I think that leads to a lot of confusion. Do you think there needs to be a change in how we use our terms and in fact, adopt a universal - truly international - terminology when it comes to cognitive impairment? And then do you think dimension needs to be retired because it inherently carries a lot of stigma?

Gauthier: This is an old topic of discussion, indeed. I also shared your feeling that dementia carried a lot of stigma because of the old psychiatric connotation, but actually people are used to it. They know what it means. We have a lot of people who say, “I have dementia,” and they talk about it openly. It's like, “I have cancer,” and I talk about it openly. I don't think anybody is going to talk about, “I have Major Neurocognitive Disorder.” I think it's just a technical term that we will keep for our medical reports or consultations. But Dementia is there to stay.

Chin: And then now, you've mentioned for our audience if you're having memory concerns, you know, go in and be evaluated. For our healthcare providers that listen, what do you think are some of the lowest hanging fruit, the easiest things that we can do to help our system diagnose people with dementia?

Gauthier: Certainly getting a good history is the key. In the report, we go into how do you prepare yourself as a lay person for the interview. There's a box that says, bring all your pills, go with someone, etc. For the health professional, maybe you need a separate visit. If you have five minutes because it's a routine visit, you didn't know the person would come with dementia-like symptoms, bring them back shortly thereafter, maybe get your nurse or someone trained, do the Mini Mental State and the MOCA before you see the patient again. It's not a rush. If you're not sure, the history is not clear, get your blood work done - the basic blood work, we go into also in the report - a scan of the brain, an atomic scan, bring the patient back and quite honestly even specialists will need sometimes a year or two to have a final diagnosis. It's okay. It's the nature of the beast. Some conditions like Progressive supranuclear palsy, a variation of Parkinson’s, may show up really 2-3 years down the road. So this is also a message for the audience. Some conditions take time to manifest themselves and it's true for memory complaints. If you look for words, it may mean different things in terms of causes, so don't expect a diagnosis at the first visit, even the second visit. It may take a year or two but build a rapport with the clinician, get referred if needed for specific issues, get special tests if needed - you don't need to have all the tests done - and I think the dialogue with the clinician is the key.

Chin: Well to end, what gives you hope that things will get better in the diagnosis and care of people living with dementia?

Gauthier: For diagnosis, I'm optimistic that clinicians who answered - those who were keen to answer a twenty minute survey - are open to using blood tests to have a more accurate diagnosis, they're open to use online algorithms to have a probability score based on data already being collected. For persons who have symptoms, my hope is that they can reach clinicians who are interested and will take this extra time or bring them back soon afterwards, who will have a dialogue for as long as it takes to get a diagnosis. As far as care, that's next year’s program. As you said earlier in the podcast, it's not going to be a medication, a cure. It's not going to happen but we can improve the quality of life for everyone living with dementia and their family. No doubt. We just have to make sure we use all resources available.

Chin: Well I'd like to thank you again for your time, Dr. Gauthier. This was a really helpful report and while it may be long, I think it is really critical for people to take a look at over their own time. I want our audience to know that we'll have a link at the bottom of our website but for those that are listening, it's https://www.alzint.org/resource/world-alzheimer-report-2021/. Not too long of a website link for us. So thank you again, Dr. Gauthier. We do hope to have you on again in the future when you have the next report.

Gauthier: It will be my pleasure. Merci.

Chin: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. 

Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers.

This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions.

To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.