Dr. Pierre Tariot (00:02):
In 2023, there's a real milestone at the FDA. The FDA said agitation associated with Alzheimer's dementia, according to these criteria and their specific criteria is an approvable indication. That's a really big deal because up until then, no neuropsychiatric feature of any dementia other than psychosis due to Parkinson's, was considered something that the FDA could recognize as an indication.
Introduction (00:31):
Welcome to Brainstorm by UsAgainstAlzheimer's, a patient center 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 (00:49):
This is BrainStorm and I’m Meryl Comer. In part two of our conversation with Dr. Pierre Tariot, former director of the Banner Alzheimer's Institute. I asked him about the neuropsychiatric features of dementia that often drive nursing home placement, despite efforts to keep a family member at home.
Dr. Pierre Tariot (01:09):
Not everyone understands that 80-100% of persons with a dementia at some point in the lifetime of their dementia experience will manifest significant neuropsychiatric features. Most people don't understand that the features are fairly predictable. Apathy is very common. Apathetic features, depressive and anxious features are quite common. Hallucinations and delusions, you know, maybe 40% risk over the span of the illness, “agitation”, a commonly misunderstood term, maybe 50% or higher at some point. Often these features don't meet typical syndromal criteria, such as you see in major psychiatric disorders. They come and go. They co-occur, they occur just one. They vary a lot over time. And so that's why I was using descriptive rather than diagnostic terms. But they're very common and just as you said, have a big impact on quality of life, independence, healthcare costs, caregiver strain, more rapid progression to death, as well as to more severe stages of dementia. We know how to help caregivers care. Partners kind of tamp things down, you know, if, if you don't insist, she can't resist. I joke that not quite a joke. My fellow clinicians, when I am agitated and demented, I don't want them to give me vitamin H when I'm coming at them swinging my fist. I want them to give me a mint chocolate chip ice cream cone and I will settle right down.
Meryl Comer (02:44):
Pierre, their strategies and tactics to work around issues that come up and trust me, I have tried them all. But there are also issues of one's personal safety. When behaviors are threatening, if the goal is to keep a person at home, what's new, to manage or monitor these behaviors?
Dr. Pierre Tariot (03:04):
In 2023, there was a real milestone at the FDA. The FDA said agitation associated with Alzheimer's dementia, according to these criteria, and there were specific criteria, is an approvable indication. That's a really big deal because up until then, no neuropsychiatric feature of any dementia other than psychosis due to Parkinson's, was considered something that the FDA could recognize as an indication. And at the same time, they granted supplemental approval to a novel antipsychotic for treatment of agitation due to Alzheimer's dementia. That's a really big deal to me, particularly since it's a treatment that's very safe. It opens the door to further advances along those lines. For instance, let's pretend I have Alzheimer's dementia, and you can tell from the doorway that I have significant depression. I'm weeping, I'm sad, I talk about sad themes, death loss, loneliness. There is no FDA indication for depression due to dementia.
Dr. Pierre Tariot (04:05):
There is no FDA approved treatment, but most sane practitioners would say, you know what? I'm going to give a safe antidepressant to try here to see if it works, and often does. So we have the FDA approval pathway, which is great news, but we also have clinical common sense. And this is embedded, for instance, in various treatment guidelines from professional societies. So we have both options when it comes to use of medication, but no medication's going to be used without the fundamentals. Is the person delirious, in pain, not able to hear or see? Is it too hot, too cold, too noisy, too dark? Has there been a dramatic change in living circumstances or care partner circumstances? Those things need to be dealt with first and foremost.
Meryl Comer (04:51):
Pierre, trust me, attached to behaviors. I used to record everything, what the temperature was, what was on television, was their music playing. Anything that either recreated positive responses or triggered the agitation. But I have to tell you, it's striking to me that the agitation attached to a disease like Alzheimer's may actually come earlier, not later in the disease, because at that point people are fighting to stay in control.
Dr. Pierre Tariot (05:20):
Actually, any of these neuropsychiatric features can occur at any point in the story of the disease, in the course of somebody's disease, and you're absolutely right. Even people with so-called mild cognitive impairment can have fairly prominent behavioral manifestations. So there's this new term, I can't remember if it's minimal or mild behavioral change. So yes, any of these features can occur early and sometimes that's the tip off more than cognition that hey, you know what, there's something brewing here.
Meryl Comer (05:49):
Pierre, let's face it, the management of memory care facilities, they want docile and not disruptive patients. So the behaviors force you to move a family member into a facility and then they get kicked out because of the same behaviors that put them there in the first place.
Dr. Pierre Tariot (06:07):
That's a scarily common phenomenon. You talked a bit about how things have evolved over time. Certainly residential facilities for those with cognitive impairment and behavioral changes have gotten more sophisticated over time. I call it the low tech high touch approach. Not every facility's able to do that, and even good facilities with fabulous staff, you know, there's turnover, things change. It is much more likely for us to see success in that setting rather than failure.
Meryl Comer (06:40):
As a care partner, your goal is to protect a loved one's dignity, and sometimes those behaviors aren't particularly dignified. When speaking to a doctor, what do you say to caregivers on how they might manage a very sensitive and private conversation?
Dr. Pierre Tariot (06:57):
I'll start by saying what I offer to my families. It's pretty transparent. I say, you know, I like to meet together, but I'm going to start with my patient and I'm going to talk only to my patient for a good long time, and I want you all to button up and listen. I want to have our relationship established, and then I'm going to turn to you and ask you some things. But I want you all to understand that if anybody here in the room wants to have private time with me, you got it. The vast majority of the time, we have our meetings all together and people sort of relax and are able to talk a little more authentically. But you know, let's say 10-15% of the time, it's so sensitive that it's better off with an either publicly disclosed private meeting or a surreptitious one, and I'm okay either way.
Meryl Comer (07:44):
Pierre the other thing I've learned from personal experiences that smart people like both my husband and mother could mask the more typical symptoms of dementia and do so very well until they could hide out anymore because the social filters went down.
Dr. Pierre Tariot (08:01):
Well and compensate and compensate and compensate. So there's this urban legend that I think is true and may or may not be supported by fact. Just as you say, people who are very, very bright do compensate for a long time. But then once the compensatory mechanisms fail, appear to decline very rapidly because they were actually significantly affected, but you couldn't see it too clearly until the coping mechanisms kind of evaporated.
Meryl Comer (08:28):
Research I've read is that women are better able to mass dementia even when tested because we're more verbal than men. So what other major issues stand out that families need to know?
Dr. Pierre Tariot (08:40):
I think we've hit on a bunch of them, but let me just revisit the punch list, so to speak. The message that cognitive impairment syndromes, I'll use that term even though you and I both know it could be behavioral change or functional change first, but changes in brain health are really very common. They can occur for a whole host of reasons. Let's not jump to any conclusions about what's happening in a particular individual. A sensible medical workup can be very helpful in identifying the cause or causes contributing to somebody's change in brain functioning. And even if what you initially thought was your worst fear, oh my god, this might be Alzheimer's. You know, by the time we get into it, it's not so scary. We can teach you how to cope on a day in, day out basis. We can treat various manifestations of the disease. We have putative disease modifiers, we have medications to help memory and thinking improve in the short run. And you know, a boatload of change happening on the therapeutic front, almost on a day-to-day basis. So it's that kind of story or conversation I think that if it were more common, I think it would be very helpful.
Meryl Comer (09:50):
Pierre, no one likes to be blindsided, so how do you counsel early stage patients and their families about that critical window of time to get their wishes known and those financial and legal matters in place before it's too late?
Dr. Pierre Tariot (10:06):
You can tell by the way I'm talking about how I talk, that I try to sort of minimize anxiety and pressure and normalize and reassure. But you're quite right that there might come a point in the conversation where I say, you know, I quote one of the Star Trek movies, “time is the fire that consumes us all” time is our enemy, actually. So one of the things I want you to think about is you may suffer a loss in the ability to make certain important decisions about your finances, your health, your treatment, whatever. So maybe this is a good time to focus on those, and this is a time to think in a very clear-eyed way, how valuable is it to you to undertake a type of treatment that may preserve your independence for a while longer? But if we're going to go that route, we have to do it pretty soon.
Meryl Comer (10:58):
I've also heard, and I thought it was a very interesting way to put it, you need to learn to give up a bit of autonomy to keep your autonomy.
Dr. Pierre Tariot (11:08):
Yeah, that's a good point. If you're willing to get some help, you can stay at home, for instance.
Meryl Comer (11:14):
Pierre, this has been a fascinating conversation. What's the best bit of advice you can offer those of us? 65+?
Dr. Pierre Tariot (11:22):
I think we're on the cusp of everybody understanding that how we live, how we treat our bodies and brains in midlife and into later life as well, is likely to be the main determinant of our brain health in the long run. So take that seriously, take it to heart. There's almost incontrovertible evidence that, you know, exercise aggressive management of hypertension, diabetes, cholesterol, hearing impairment, sleep impairment, that those things make a really big difference. So take good care of yourself and you're likely to have a much better long-term outcome. And that advice doesn't stop for us. More mature people as wise ones, take good care of yourself and that will help.
Meryl Comer (12:07):
Thank you so much for joining us. Our guest has been Dr. Pierre Tariot, retired but still actively engaged, as you heard for The Banner Alzheimer's Institute. 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 and guests you'd like to hear featured on Brainstorm? Send your comments to BrainStorm@usagainstalzheimers.org.
Closing (12:53):
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