BrainStorm by UsAgainstAlzheimer's

Ep 58: Pierre N. Tariot, PhD - The Neurology Crisis and What it Means for Alzheimer's

Meryl Comer, UsAgainstAlzheimer's Episode 58

By 2030, all baby boomers will be 65 years of age or older, equating to over 71 million people. As the aging population grows, a shortage of neurologists and geriatric doctors puts early diagnosis in jeopardy. In this episode of BrainStorm Dr. Pierre Tariot, former Director for Banner Alzheimer's Institute and Co-Director of The International Alzheimer's Prevention Project discussed the challenges of diagnosing and treating Alzheimer's disease with a shortage of neurologists. Host Meryl Comer and Dr. Tariot, who has devoted his career to the care and study of people with or at risk for Alzheimer's disease, talk about the importance of early detection for effective treatment. You won’t want to miss this episode!

This episode is sponsored by Otsuka and Lundbeck.

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Pierre Tariot (00:01):

Let me tell you an anecdote of a paper that I wrote where we reviewed a large number of healthcare records of persons in a chronic care facility to look at what the record said was going on with them, and there was complete disconnect. 80% in this facility had a major neuropsychiatric disorder that was recognized in only about 10% of the cases. You know, it's much better now. Many doctors on the front lines are aware that cognitive impairment syndromes are common and can be addressed and are willing to do that.

Introduction (00:36):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver and Emmy Award-winning journalist, and the author of the New York Times Bestseller, Slow Dancing With a Stranger.

Meryl Comer (00:54):

This is BrainStorm and I'm Meryl Comer. By 2030, all baby boomers will be age 65 or older, that's over a 71 million of us. Combine those statistics with headlines that scream about a shortage of neurologists. Joining us is Dr. Pierre Tariot, former director of the Banner Alzheimer's Institute, principal investigator on more than 50 clinical trials in Alzheimer's and related dementias with over 450 published papers. He also served as co-director of the International Alzheimer's Prevention Initiative credited with helping launch a new era in Alzheimer's prevention. Dr. Tariot, welcome and congratulations on your recent Healthcare Heroes Lifetime Achievement Award. It's great to have you.

Pierre Tariot (01:43):

Thank you. Flattery will get you everywhere. Nice to be with you,

Meryl Comer (01:46):

Pierre. You've devoted your career to the care and study of people with or at risk for Alzheimer's disease and their families. Can you share your thoughts on the challenges we face right now with the shortage of neurologists?

Pierre Tariot (01:59):

I think that's a great point to emphasize. The literature suggests, and I would agree with it, that if we put all the specialists together, not only neurologists but geriatricians and geriatric psychiatrists, I myself am an internist and geriatric psychiatrist. If we all huddle together, we might be able to take care of maybe 10% of all the persons suffering with dementia or mild cognitive impairments. So it's a serious problem and one that we need to address systematically.

Meryl Comer (02:29):

The shortage of neurologist comes at an inopportune time when the treatment advances demand early diagnosis to even qualify someone for current therapies. So what do we have to do?

Pierre Tariot (02:41):

We would all benefit if we could help our primary care colleagues be better prepared to understand who's at risk, how to evaluate people who's at risk, how to render a reasonably accurate diagnosis, how to treat where you can, and how to address the non-medical needs, which happens to be a huge part of the challenge, in my opinion. And when and how to refer to specialists.

Meryl Comer (03:09):

Is this a case where stigma still plays a role

Pierre Tariot (03:13):

That would be more therapeutic nihilism than stigma? I think it's a mixture of things. It's very, very tough to be in primary care, very tough, and our field has not done a good job educating practitioners and really their whole practices on how to approach this. One thing that we've noticed is that if Mrs. Jones comes in and says, I'm fine when asked, she's okay, but if you go too far and find out that she has a suspected cognitive impairment, she's going to turn into a patient who's going to demand a lot of time and demand expertise that I as a doctor might not have. But it's sort of trying to avoid turning somebody into a complex patient instead of a simple patient. Then there's ageism, that's an issue. Then there's mental healthism. If you have a problem with your brain, you're just sort of not quite right. I think all of those things have been factors, and as you pointed out at the beginning, therapeutic nihilism, there's not much we can do. So let's not get into it.

Meryl Comer (04:14):

You mentioned your focus on primary care physicians, but the reality is so often we're all sent to specialists, and I've had cardiologists say to me, well, I don't want to say anything because I don't want my patient depressed.

Pierre Tariot (04:26):

That's a great point. We do encounter specialists of a variety of kinds, even podiatrists and dentists and counselors who want us to train them on better, recognizing the signs of somebody with a suspected cognitive impairment and giving them some tools for communication, but also practical suggestions about how to refer for more help. So let me tell you a story, if I may. It's a more or less true story with a few facts changed to protect the innocent. But I have a friend who's very, very bright guy, we're dog walkers, older gentleman who confessed that he was concerned about his cognition. He happens to be in a healthcare system that is quite sophisticated. And so I said, talk to your doctor and bring up your concerns and mention these few things. Specifically, his wonderful primary care doctor on a Tuesday did a semi-structured interview and some simple objective office testing and said, yeah, there's something brewing here that day, ordered blood tests.

Pierre Tariot (05:28):

And the next day he had a brain MRI, that wasn't particularly alarming. And then he discussed the pros and cons of having an amyloid PET scan to establish the likelihood of Alzheimer's pathology being present. And that Friday had the PET scan and it was negative. So in a period of days, a primary care doctor established that there was concern, did a basic evaluation, and actually did a sort of fairly sophisticated biological test that allowed the patient to feel that whatever's going on with my memory probably isn't Alzheimer's. Let's focus on what it is. There's a lot that primary care could do that doesn't require specialty involvement with some backup from US specialists. Maybe our primary care colleagues can feel comfortable for once saying, I can take it the first mile

Meryl Comer (06:21):

Pier, the efficiency you describe of the doctors paying attention and making something happen, where do you find that today? In medicine, it's usually, please go get this test. Well, that test takes two or three weeks, so you're delaying the diagnosis and people's mental health is on the line.

Pierre Tariot (06:39):

It just underscored the fact that maybe we're making this too complicated. It is possible to train healthcare practitioners to understand who's at risk, to understand how to do a sensible initial clinical assessment, how to do some simple objective cognitive testing, either oneself or with office staff. It doesn't need to be a day long battery. You can get a lot of information with a pragmatic 10 minute or less objective cognitive test. In this healthcare system, it was very easy to get imaging done. That's not usual. You're quite right. It's usually several week delay, but still, I think the takeaway is there, we ought to be able to do this a lot better and it's not going to be that complicated.

Meryl Comer (07:24):

Do you think the medical community recognizes the stress and drama within a family when a loved one shows symptoms of dementia or any kind of neuropsychiatric behavior? Add to that, the issue of misdiagnosis and that extended angst that goes with the search for answers.

Pierre Tariot (07:42):

One of the things I think we could do for each other is teach on that point. You know, when you've seen one patient, you've seen one patient. But there are some commonalities that I think we can sensitize people to that you know, at the beginning, the affected person and the loved one may want to avoid actually opening their eyes and saying, what's going on here? A lot of us want to minimize it. They don't want to open Pandora's box, but then it continues and he starts saying, why is he being such a jerk? Or she? And it's often a while before the family, the patient gets to a tipping point that they go, holy cow, there really is a problem here. And getting to that point's hard and having the courage to go from that to, and I'm going to get an evaluation, that's actually a drama, that's a family drama.

Meryl Comer (08:34):

Unfortunately, it's going to become more and more of an issue since the window of opportunity to slow disease progression really depends on early diagnosis. Yeah,

Pierre Tariot (08:45):

It isn't easy. And I think, you know, the point I was trying to make is I think we can sensitize our fellow practitioners to the strain of coming to terms with, oh my gosh, there is an issue here. Do we dare look into it?

Meryl Comer (08:58):

Please put on your psychiatrist hat for me. Why is it so hard for so many families and individuals to accept a diagnosis?

Pierre Tariot (09:08):

Well, I think none of us wants to look in the mirror and say, my brain isn't working right. That raises the specter of a future of loss of independence, loss of autonomy, loss of identity. And that's a scary prospect. And if I can skate through another day or week or month or six months avoiding that, maybe I'll choose to do that. And then on the other hand, there are people who are wired differently, who care, want to know right away if they have a healthcare concern, even brain health, and get it evaluated. In my experience, those folks are the minority. I would say half or more would be fine, kicking the can down the road as long as possible. But in my experience, usually it gets that holy cow moment sometimes for the patient, more often for loved ones. You know, dad, we love you to bits.

Pierre Tariot (09:58):

We're concerned about your thinking and memory has changed. Let's get it looked into. It could be a simple medical problem. It could be sleep, it could be hearing, it could be booze, medications. Let's get it looked into. That sort of low stress approach can be the door opener. And even if the ultimate outcome is, Mr. Jones, this looks like it may be the early phases of a neurodegenerative disease, and it might even be Alzheimer's disease or something like that, by then, hopefully there's enough trust and communication that that can be conveyed and received as, okay, this is a chronic illness, we're in this together. I will stand by you for as long as it takes to help you.

Meryl Comer (10:40):

Do you think that a person's adult children or their spouses are co-conspirators in this kick the can down the road syndrome? And if so, what do you say to them?

Pierre Tariot (10:52):

Absolutely. It can be within one person, can be a mixture of those things. Certainly across the spectrum, there are a lot of kick the canners, including the loved ones. Let's talk about my wife. I don't want to think that she has a brain disease. I don't want to think that, and I don't want somebody to tell me that. And you know what? 96% of the time, she's pretty much, okay, so let's just skate

Meryl Comer (11:14):

Based on my personal experience with my husband, who was a doctor and in denial about his diagnosis, doctors of the worst patients I've ever met,

Pierre Tariot (11:24):

I hesitate to generalize, but I'll say I'm the worst patient I've ever met. So

Meryl Comer (11:29):

Let's use the lens of contrast. Describe the state of dementia care, what, 40 years ago when you got into this field, or more. How much better is it today?

Pierre Tariot (11:40):

That's a great question, and let me tell you an anecdote of a paper that I wrote where we reviewed a large number of healthcare records of persons in a chronic care facility to look at what the record said was going on with them. And then we actually did research evaluations on them, and there was complete disconnect. 80% in this facility had a major neuropsychiatric disorder that was recognized in only about 10% of the cases. You know, it's much better now for a whole variety of reasons. Patients and families themselves are more likely to be tuned in. Many doctors on the front lines are aware that cognitive impairment syndromes are common and can be addressed and are willing to do that. But what I hope for my primary care community colleagues is that they understand that they can do pragmatic assessments that will be remarkably helpful. They don't necessarily need to get deeply involved in some of the new biological assessments. I mean, some of them will choose to learn how to use these, but it's not mandatory. So there's a sort of pragmatic arm to where I think we can go in the near future. And so again, I'm hoping that primary care folks will feel comfortable handling routine things, and to use a phrase that's a little dangerous rule outs, but reserves, specialists for people with highly complex presentations, or who will benefit from the more complex diagnostic and therapeutic options.

Meryl Comer (13:15):

Stigma is an issue because the research and treatments are just trending younger with early diagnosis. So you have people in their prime that are going to end up marginalized in the workplace. And our goal as advocates is to encourage people to go for early diagnosis. So what's the answer?

Pierre Tariot (13:34):

I don't have a simple answer. That's, it's just such a complicated issue. I guess my fantasy is that we should and can and will normalize all of this at multiple levels. Our team here at the Banner Alzheimer's Institute, where I'm still very actively engaged, has done a lot to help communities accept persons with dementia. That's our goal here, is to do what we can, despite some challenges, to assure your dignity, your safety, maximize your independence, maximize your joy and quality of life. We can do those things together, you know, that type of conversation rather than this sort of reflexive black and white good versus bad kind of conversation.

Meryl Comer (14:19):

Coming up in part two of our conversation with Dr. Tariot former Director of the Banner Alzheimer's Institute, we delve into behavioral and neuropsychiatric features of dementia that 80 to 100% of patients will manifest at some point in their Alzheimer's journey. You won't want to miss this conversation. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us. Our team is on a mission to help you stay up with the latest scientific breakthroughs from new therapies to technologies on early diagnosis and personal brain health advice from well-known experts using an equity lens that promotes brain health for all. Now we'd like to hear what's on your mind, what are the topics in guests you'd like to hear featured on? Brainstorm? Send your comments to brainstorm@usagainstalzheimers.org.

Closing (15:17):

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