Dr. Brent Forester (00:01):
It's sometimes very hard to take a step back. So in some ways, the caring, smarter not harder means you need a coach for this, right? You need someone to help you see how you manage various situations, develop insight into those and then reflect on that with someone else. Because to try to do this yourself is like trying to be your own therapist. It's like trying to be your own doctor. It doesn't work. You need someone to help you take a step back and see the big picture, and you really need that coaching along the way.
Opening (00:30):
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(00:48):
This is BrainStorm. And I'm Meryl Comer. Our guest is Dr. Brent Forester, Psychiatrist in Chief and Chairman of the Department of Psychiatry at Tufts Medical Center and Director of Behavioral Health for Tufts Medicine. His new book, “The Complete Family Guide to Dementia, Everything You Need to Know to Help Your Parent and Yourself.” In part two of our conversation, we talked about the need for a change of mindset from the medical community and the public in general when it comes to dementia.
Dr. Brent Forester (01:22):
A lot of people, when they see the problem of dementia, they feel overwhelmed and scared and afraid. And I'm talking about clinicians, caregivers in the public. But at the end of the day, the perspective that I think is the most helpful is to focus on what we can do for people with dementia, not what we can't do, because there's no point in just focusing on the disability and the absence of function. It's really to focus on what works well, you were saying it before, you came up with environmental interventions. Behavioral interventions that would help maximize quality of life, improve in the moment your husband's enjoyment of the situation, and to reduce the concerns around safety. And that's really what the goal of care should be. And when you have those conversations with caregivers, it's rare you'll get disagreement. The problem is, if you're dealing with someone when you're in a crisis mode with your husband during those days when you may have needed to go to the emergency room or the hospital, it's hard to be planful in the moment other than dealing with the crisis at hand just to keep people safe.
Meryl Comer(02:18):
Dr. Forester, your book states Learn how to care Smarter, not harder. Please share some tips.
Dr. Brent Forester (02:25):
Number one, it's easier said than done. Like intellectually. You may know I cannot disagree with my loved one. I can't get into an argument, but your natural instincts take over and your previous relationship and the way you worked with one another takes over, and it's sometimes very hard to take a step back. So in some ways, the caring smarter not harder means you need to coach for this, right? You need someone to help you see how you manage various situations, develop insight into those and then reflect on that with someone else. Because to try to do this yourself is like trying to be your own therapist. It's like trying to be your own doctor. It doesn't work. And so that's where the care management or the coaching comes in. And we now seen repeatedly in studies that it really does work. And by the way, there's no one tip, right? There's no one way to do this. You've seen one person with dementia, you've seen one person with dementia, you've seen one caregiver, you've seen one caregiver. Patterns repeat themselves for sure, but when you're in it, you only see what you see, right? You need someone to help you take a step back and see the big picture. And you really need that coaching along the way.
Meryl Comer(03:27):
Surprised me because when patients and caregivers are recruited for clinical trials, or you look at the patient caregiver experience, if you're in the middle of the disease, there is no hindsight or foresight into what's next. You are in the moment, and I really think the profession has missed the opportunity to tap into former caregivers because trust me, we don't forget where we've been with a loved one in this disease, but we have the hindsight of how we either got out of the situation or how we worked around it. So I think we're an asset that is not quite frankly used by your profession.
Dr. Brent Forester (04:05):
I'm so glad you mentioned that. I've been thinking about this a lot the last couple of years. We need to scale a workforce to help support caregivers, right? We know that. And the best and most informed are the former primary caregivers, right? Like you're saying, it's people with lived experience in the field of mental health more broadly. There is so much work going on right now in the areas of peer support for people with mental illness and recovery coaching for people with addictions. And these are people with lived experience they know very well, and they have insights. They don't have to have a medical degree or a PhD degree to be able to deliver an intervention to somebody who's currently a caregiver and be helpful. So I couldn't agree with you more that we've got to figure out a way to tap into caregivers who have been caregivers who want to be part of a workforce to help us support this really overwhelming tidal wave of caregivers that are really not only upon us now, but will only grow
Meryl Comer(04:55):
Out of respect for a physician's time. Tell us how the caregiver or the adult child, whomever is the primary with the patient, should observe and speak about behavioral symptoms. What should they be looking for, doctor and communicating to you?
Dr. Brent Forester (05:12):
So one of the things you brought up before in terms of the discomfort sometimes in saying anything like this around your loved one who has dementia, because either they may get upset or they don't have the awareness and then they'll get upset or they just won't understand. So I do think you have to figure out a way to have that conversation usually without the person there, but if you're going to do it with the person there, the way I handled that as a clinician in the outpatient setting is I will say to the person with the illness, listen, I need to ask your wife or your son a few questions. And when I ask them questions, their answers you may not agree with or you may not even see that as reality, and that's fine, you let me know, but I really want to hear from them.
Dr. Brent Forester (05:49):
And I always do that after I've spoken to the person with the illness first, because I want to hear their perspective first. So that's one tactic that clinicians can take that you could maybe even talk to them ahead of time about, I really want to talk about this with my loved one, but I'd like you to address them first and then you can address me. But the things to watch out for are what is it about their behavior that's impacting the person's quality of life or your quality of life as a caregiver? It could be sleep disruption and they can't sleep at night, so you can't sleep at night. Now you're tired all day and cranky and irritable. Or it could be a safety concern that they're wandering outside of the house, or it could be a sign that they're just worried and nervous and pacing all the time, you know?
Dr. Brent Forester (06:29):
And then a good clinician will ask, well, when does that happen? How often? How severe? What provokes it? All those kinds of things. But that's what I'm wanting to know. Mrs. Jones is agitated, is not helpful, but saying that Mrs. Jones, at three o'clock in the afternoon when it's time for her bath starts to throw things around the room, then you can pursue things more carefully about what else is going on in the environment and what can we do to try to reduce that reaction or that behavior. It's not unheard of that these behaviors occur in isolation without any provocation. That does happen. But very often these are provoked and they're not provoked willingly. They're provoked because of things that are happening in their environment that set them off. And there are ways to try to address that, but you've got to be a detective.
Meryl Comer(07:12):
Can you describe the new array of treatment options for people who suffer with these behavioral issues? Too often they still use the old anti-psychotics in nursing facilities.
Dr. Brent Forester (07:25):
The management of these behavioral symptoms that I mentioned tell a very long story short, is the first thing we want to do is describe the behavioral problems we're seeing when they occur, what they are, how severe they are, and the impact they're having on quality of life and safety. So that's one. Number two, we got to come up with a cause, like why? And there are three buckets of why most behavioral symptoms like anxiety, depression, paranoia, hallucinations, agitation are being triggered by one of three things. It's something going on around them in the environment that's number one. It could be from their caregiver, it could be the time of day, it could be the noise, it could be the chaos. The second is a medical problem. And frankly, when I'm investigating, I'm most worried about a medical problem causing these behavioral symptoms that could be otherwise treatable and without treating, could be really dangerous, like an infection, a change in another medical status like diabetes that's ought to control or lack of oxygen to the brain, or a medication side effect, or a drug of abuse or alcohol, you know, medical problem.
Dr. Brent Forester (08:21):
So one bucket's environmental, one bucket is medical, and the third bucket is this person actually had a history of bipolar disorder or depression, and now it's a recurrent episode. And maybe what I'm seeing for anxiety, depression, agitation is recurrent depression, mania psychosis. And knowing that's key because the approach is different than if it just happens in the setting of a urine infection. So if we don't describe the behavior, number one, and we don't figure out the cause, then we can't come up with treatment. And no matter what we do with medicines, we have to come up with a behavioral plan that will help to reduce whatever in the environment is impacting them. Then when it comes to medicines, we have only one drug that's been approved by the FDA to treat agitation in Alzheimer's disease. That's one of the antipsychotic medications. It happens to be called Brexpiprazole.
Dr. Brent Forester (09:06):
It was approved last summer. Now why is there only one? There are many antipsychotics on the market. Well, there's a lot more data with some of the other antipsychotic medications like Risperidone and Olanzapine that were studied 20, 30 years ago. But they were never approved because the FDA was concerned at the time about safety. And all of the antipsychotics have a warning that when we're giving them to people with dementia, they may cause a slightly increased risk of stroke-like events or even a higher risk of mortality. But I've never had a family member when they have someone who's wandering into the streets at night seeing things that aren't there physically aggressive, say, well, don't give my parent that antipsychotic because it might lead to a slightly increased risk of mortality because in the moment the situation's not safe. So risk benefit discussion is the critical discussion to have because the overall risk of stroke and death is very small.
Dr. Brent Forester (09:54):
The overall risk of a bad outcome from an untreated syndrome like this is problematic. I'll just say one other thing. There are medicines though that have been studied that are not antipsychotics that are helpful. The serotonergic antidepressants that we give for depression to younger people all the time, drugs like Sertraline or Zoloft or citalopram, Celexa, those drugs work for agitation and dementia. They're very effective. They don't work today, but they will work over the course of two to four or longer weeks, and they're very well tolerated. And then we've been experimenting and now studying with NIA funding a number of other treatment interventions, one of which is the class of drugs we call cannabinoids. So this includes a drug that's been available on the market for 40 years called ol, a synthetic THC compound. So the bottom line is there are lots of opportunities and ways to treat these symptoms. They're highly treatable problems, but you've got to figure out the cause. First.
Meryl Comer(10:47):
Dr. Forrester, just one last question. Do you believe it's important that we begin to define new outcomes that are more meaningful to patients and to the profession than the standardized memory and cognitive research tools?
Dr. Brent Forester (11:01):
Right now, the outcome measures that the FDA supports in approving a drug for the treatment of Alzheimer's disease or cognitive and measures and functional measures, some composite between the two. Really important. We need that. But like I said, most of the problems relate to the behavioral symptoms. And if you look at some of the data with these newer compounds being studied, again, they were never designed those studies to look at behavioral outcomes. They collect data on it. So there is some evidence that has yet to be published that these may have an impact on behavioral symptoms. And I would argue that if we could design studies to really look at the behavioral outcomes of these interventions, then we'll see the full scope of their impact. And only then will we see the potential impact of these new therapies.
Meryl Comer(11:39):
Doctor, I know your patients are waiting. Thank you so much for your time. Our guest has been Dr. Brent Forrester, psychiatrist in chief and chairman for the Department of Psychiatry at Tufts Medical Center and Director of Behavioral Health for Tough Medicine, his new book, the Complete Family Guide to Dementia, everything you Need to Know to Help your Parent and Yourself. 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 (12:39):
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