EPISODE 71

[INTRODUCTION]

[00:00:05] MBH: Thanks for joining us at Keys for SLPs, opening new doors for speech-language pathologists to better serve clients throughout the life span; a weekly audio course and podcast from speechtherapypd.com. I'm your host, Mary Beth Hines, a curious SLP who embraces lifelong learning. Keys for SLPs brings you experts in the field of speech-language pathology, as well as collaborative professionals, patients, and caregivers to discuss therapy strategies, research, challenges, triumphs, and career opportunities. Engage with a range of practitioners, from young innovators to pioneers in the field as we discuss a variety of topics to help the inspired clinician thrive.

Each episode of Keys for SLPs has an accompanying audio course on SpeechTherapyPD.com, available for 0.1 ASHA CEUs. We are offering an audio course subscription special coupon code to listeners of this podcast. Type the word KEYS for $20 off, with hundreds of audio courses on demand and new courses released weekly, it's only $59 per year with the code word KEYS. Visit SpeechTherapyPD.com and start earning ASHA CEUs today.

[INTERVIEW]

[00:01:22] MBH: Welcome to this episode of Keys for SLPs, Keys to Cognitive Rehabilitation for Survivors of Long COVID. I'm your host Mary Beth Hines. Before we get started, we have a few items to mention. We encourage questions from our participants. You can put your questions in the chat box for our guest to answer throughout the episode, as well as at the end of the episode.

Here are the financial and non-financial disclosures. I am the host of keys for SLPs and receive compensation from SpeechTherapyPD.com. No relevant non-financial relationships exist. Dr.ÊJames Jackson is a research professor of medicine and psychiatry at Vanderbilt, where he is also the Co-Founder and Director of Behavioral Health. He is an author of a book on long COVID. He receives an honorarium from SpeechTherapyPD.com for this presentation. No relevant non-financial relationships exist.

Here are our learning objectives for our course today. Describe the nature of cognitive problems in long COVID survivors and the contribution of mental health issues. Identify three methods for neurocognitive retraining for survivors of long COVID. And explain how to integrate acceptance into therapy goals when working with long COVID survivors.

Now, we welcome our guest today, Dr. James or Jim Jackson. Dr. Jackson is an internationally renowned expert on long COVID and its effects on cognitive and mental health functioning. He is a licensed psychologist specializing in neuropsychology and cognitive rehabilitation. Dr.ÊJackson is a pioneer in the investigation and treatment of post-intensive care syndrome. He is a research professor of medicine and psychiatry at Vanderbilt, where he's also the Co-Founder and Director of Behavioral Health at the ICU Recovery Center, one of the first comprehensive clinical resources devoted to diagnosing and treating survivors of both mild and critical illness, including those who survived COVID-19.

Additionally, he serves as the director of long-term outcomes at the Critical Illness, Brain Dysfunction, and Survivorship Center, a consortium focused on advancing knowledge, education, and models of care for people affected by acute and long-term brain dysfunction following wide-ranging illnesses.

He and his team created the first psychologist-led long COVID support group in the United States early in the pandemic and continue to offer multiple groups each week. We are so happy to have you on Keys for SLPs to talk about cognitive rehabilitation for survivors of long COVID.

[00:04:05] JJ: Thank you, Mary Beth. Honestly, I can't tell you how much I've been looking forward to this. I'm really eager to talk about cognitive impairment and long COVID, the role of SLPs in helping solve that problem, often a difficult problem to crack. And thank you for welcoming me so warmly.

[00:04:24] MBH: Well, of course. Thank you for contacting us. It's not every day that we meet someone in another profession who recognizes the role of speech-language pathologists and in such a pertinent role in working with survivors of long COVID. So, you contacted me and said that you've worked with several speech-language pathologists and you really see their role as critical in working with these patients.

[00:04:50] JJ: Taking a step back. About 15 years ago now I did a sabbatical in the United Kingdom at a place called the Oliver Zangwill Centre which recently closed his doors, unfortunately. But it was founded by the famous British neuropsychologist Barbara Wilson. Some of you all will know who she is, she's the person who developed the BADS, for instance. Some of you may use the executive functioning assessment, the BADS. While I was at the Oliver Zangwill Center, I worked with a lot of classically brain-injured patients, and I worked side by side with a lot of SLPs. That was really my first introduction to them. While there, I learned a lot about the unique insights and the unique contributions that they could make, that only they can make, and that high regard that I've held them in stayed with me.

When long COVID happened, and it was clear that so many people with long COVID had cognitive problems, I started referring and referring and referring. I have a colleague in Nashville, I would guess she and I should count them one of these days. I would guess, I referred 20 patients to her in the last year or so. They have benefited so immensely that I keep doing that, and will do that as long as she has more patients to take.

[00:06:09] MBH: Well, what a wonderful collaboration and we really do appreciate you reaching out to us, and this is such an important topic for our profession and for our patients, and for our world right now. Tell us, how did your journey lead you to specialize in long COVID?

[00:06:26] JJ: It's a great question. I came to Vanderbilt from California a little over 20 years ago now, and in those days, one of my colleagues was founding a research center called The CIBS Center, The C-I-B-S Center, critical illness, brain dysfunction, and survivorship center. In those days, and in the years that followed, we focused on engaging ICU survivors, people who had been very ill, on a ventilator with organ failure, things like sepsis. We focused on engaging those patients, and addressing their cognition, and did a lot of research on cognitive rehabilitation in particular.

So, when the pandemic came, I was well-versed in this space of cognitive impairment after medical illness. It was much of what I had studied, really for close to two decades. But of course, I hadn't done that work with COVID survivors, and I suspected, based on my experience, that COVID survivors would likely have cognitive problems, as do many others with medical conditions. So, we started working, this was early in 2020, started working with survivors of critical illness who had COVID, COVID ICU survivors, and they often had very significant cognitive problems.

Now, whether those were due to COVID, or whether those were due to things like hypoxic brain injuries from being on a ventilator for a long time, whether they were due to other events that happened in the hospital, anybody's guess. But the bottom line is, they had significant cognitive problems. After starting to work with long COVID ICU survivors, it was just a very short step to then began working with long COVID patients who had never been in the ICU, who had never been in the hospital, but who often reported cognitive problems. And it was a lot like the scene or the line, I should say, in the Field of Dreams.

If you remember the classic, ÒIf you build it, they will come.Ó They'll come. So, we built a bit of a program, and before you knew it, they just started coming, they started coming. Today, we have about five support groups a week. We have close to 100 patients in our peer support groups from all over the world that we engage cognitive impairment is a topic, a key topic in those support groups. We have studies that we've done and are doing on cognitive impairment. I see a lot of patients with long COVID clinically. So, it's been a beautiful evolution, itÕs been very sad that there's a need for this. But it's been lovely to play a role in creating a safe place where people with cognitive impairment can come and can be helped.

[00:09:08] MBH: Well, I really enjoyed reading your book Clearing the Fog, and I didn't just caveat it. I didn't finish the entire thing. But I did Ð full disclosure, I did enjoy reading and I haven't finished it. But one of the biggest surprises for me was the long COVID for people who some, who didn't even Ð the long COVID syndrome, for some people who didn't even realize that they had COVID or had very mild symptoms. Three weeks or so later, there was an unexplained cognitive issue.

[00:09:39] JJ: This has been one of the mysteries of COVID, and it's been one of the surprises. I certainly was not surprised when I began to encounter COVID patients who were critically ill in the ICU, who had been on a ventilator for 30 days, had been in the hospital for 100 days. I was not surprised when those folks developed meaningful cognitive problems, because we'd seen that before. But when we started seeing people who were barely ill, barely had any symptoms at all. Yet, they had very clearly defined, very problematic cognitive problems. I wasn't expecting that. Obviously, they weren't expecting that either, right? I think their physicians, also were not expecting that.

So, that's a situation that is traumatic for people partly because it has caught them so completely off guard, right? They're fine one day, they're a little bit ill. Then, the next thing you know, in the cognitive space, they're doing things like leaving the stove on, and putting metal in the microwave, and putting their keys in the refrigerator, and backing into a car in the parking lot. I mean, these are the sorts of stories we hear. Oftentimes, when that happens to these patients, the only way they can explain it is they think they have early onset Alzheimer's. They think they've developed dementia out of the blue. As you know, dementia typically doesn't develop that way. So, it's helpful to be able to say to them. The good news is this likely isn't dementia. You didn't develop Alzheimer's disease last week. The bad news is, this is a real problem. We've got to find a way to fix it.

[00:11:21] MBH: Then, the other good news, I mean, it is a problem. But the other good news and the big differentiation between Alzheimer's is that this is not a progressive disease.

[00:11:32] JJ: That's right. There have been some studies and some speculation as well, about what happens when people are in their seventh or eighth decade of life, already may have some dementia percolating and they develop COVID. There's been some evidence that in those patients, that might tip the scales a little bit and accelerate the process of decline that's already occurring in those patients. But absent those examples, you're quite right. This is not progressive. In fact, if anything, what we see more typically is that people's cognition improves. 

Now, whether it improves back to their baseline, whether there is good one-year post-COVID as they were on their best day before they got COVID, that's an open question. But the natural history of this impairment seems to be that it either gets static, or it gets a little bit better. Certainly, it benefits from treatment, but it is not typically progressive. You're right.

[00:12:37] MBH: Okay, okay. Well, that is a silver lining in this, right?

[00:12:39] JJ: Absolutely.

[00:12:40] MBH: All right, well, let's talk about the nature of some of the cognitive problems that you've seen in long COVID survivors.

[00:12:49] JJ: It's really interesting. Again, we're operating I'm sure from the same page. So, this isn't new news to you. But it's interesting how people report what words people use to describe their cognitive problems. I think, if you're not careful, those early descriptors can really throw you off, right? They can take you down an avenue where it is actually pretty unproductive and confusing.

What I mean is, very often when our patients come to see us, they report deficits in memory. That's one of the main things they talk about some version of, ÒDoc, my memory is not working.Ó When you drill down, it typically isn't memory problems that are the primary concern in these patients. As you noted, this isn't an Alzheimer's process, and very rarely do they have amnestic memory problems. That's typically not it. But that's how they experience them often, problems with memory, and I think that's the term in the cognitive realm that most people are familiar with, right? People aren't familiar with the term visual-spatial construction, right? They're not going to come to you from out of the blue and say, ÒMan, I'm really having some deficits in my processing speed.Ó They just start with memory.

When you drill down, what we have found is that the predominant deficits are in processing speed, in attention, and often in executive functioning. They have striking deficits in those three areas. Of the three, I think processing speed problems are probably the most characteristic. In the war in Iraq, if you recall, when traumatic brain injuries were so common because of IEDs and SVBIEDs, and explosives. Many commentators said that the TBI was the signature injury of the war in Iraq. That was a common term, the signature injury, and I think processing speed deficits may be the signature injury of neuro long COVID. Those are, I think, the most common problem, followed by deficits in attention and executive dysfunction.

[00:14:56] MBH: Okay, okay. So, with the processing speed, what kind of scale do you use? Because you don't really have the patient's baseline, right? You only have that from report.

[00:15:07] JJ: Yes. We don't have their baseline, and that's really a problem. As you know, if you don't have that baseline data, you're forced to make a lot of inferences. Now, in some cases, those inferences are difficult for us to make, that is not exactly sure where you were before. But in other cases, the inferences have been fairly easy. I mean, we have a fair number of patients who are engineers, they are attorneys, they are physicians, they're high-achieving, Ivy League, white-collar professionals, et cetera. So, when we refer them for neuropsychological testing, I sometimes do that myself, but because of the volume of work, I often refer it to one of our colleagues at Vanderbilt who's amazing.

When they do their neuropsychological testing, and their scores on measures of processing speed and executive functioning, working memory, and attention are 103, or 97, or 107, and they graduated first in their class at the University of Pennsylvania, or in the top quarter at Stanford, you're pretty sure that something is off in them, right? You're pretty sure. That's what we see a lot. Often, with our higher functioning patients in particular, a real frustration for them is that they go see a neuropsychologist, they get a battery, the battery comes back average, average, average, average, low average, average. Then, the neuropsychologist says, ÒHey, Mr. Smith, I'm reading your test report. I think everything's fine.Ó They know that normal scores don't necessarily mean everything is fine because they were functioning at a much higher level before.

So, that's something that comes up again and again and again, and I often have conversations with my colleagues about the importance of a little nuance and the importance of couching things, just because someone scores at the 50th percentile, as you know, doesn't necessarily mean everything is fine.

[00:17:18] MBH: Mm-hmm. Well, that brings up the question of insurance coverage. What have you found with insurance coverage? So, let's say you have a really high-functioning professional who has excelled academically throughout their whole life. Now, they're coming in average, or even slightly above average, but that's much lower than they should be.

[00:17:43] JJ: Yes, we've had pretty good success with insurance covering things like speech and language pathology services, and neuropsychological testing. We have had less success with those people being able to receive disability. Often, they're applying for short-term disability, or it may be that they have a long-term disability policy through their work, as many people do, and they're interested in going on long-term disability. And frequently, the long-term disability adjudicator will say, ÒYour cognitive testing scores, they were normal, and you seem to be fine. The notes don't seem to reflect that you're unable to function.Ó I think that's really unfair to those folks. Because I think, even if you are normal by some population standard, if your scores have declined, two or three standard deviations for you, that's quite a significant impairment.

So, whether you go from a 140 to a 100, or whether you go from 100 to a 70, they're a little different, but both of them represent really significant problems. I think, one thing I've found, and I know, I'm in a community of friends here tonight who agree with this, I think, as people engage our patients, there continues to be too much of an emphasis on things like a test score, and not enough emphasis on what is more important, I think, which is functioning. I don't care, frankly what your score is on a MoCA. It's not that it's not important. But more important than that is how is your day-to-day life affected? Increasingly, while I think self-report has some obvious limitations, conversations that focus on self-report certainly play a role here, because there are many patients who are fine-ish on cognitive testing. But if you listen to their histories, and their compelling descriptions of impairment, they're clearly not functioning well.

[00:19:54] MBH: Exactly. You do give quite a few examples of that in your book. So, with long-term disability though, so let's say someone can't do that high-level job, but their insurance was, and we don't have to go dive too deep into this insurance rabbit hole. But their insurance was for coverage of disability of their profession, their chosen profession, whatever they decided to do. So, it certainly doesn't seem quite right that you couldn't do some of those jobs with average scores. That wouldn't be covered.

[00:20:30] JJ: Yes. In my experience, in situations like this, we usually get there. We usually get there with a patient. They find an SLP or a neuropsychologist who's willing to advocate for them, who will write a strong letter, who will write another letter, who will really advocate for them, and we usually get there. But getting there is difficult. It takes longer than it should. I would say the other thing related to disability, that is really important, especially with our patients who are very impaired, is that if you have tried to fill out disability paperwork, and perhaps you have for your patients, that requires a certain amount of attention to detail, right? It requires a certain amount of ability to understand what is being asked, comprehend, et cetera.

So, this whole notion that we're taking someone who's cognitively impaired, and then we're going to ask them to thoughtfully fill out a complicated form to prove that they're cognitively impaired, that doesn't really compute to me. ItÕs not quite fair, right?

[00:21:34] MBH: Yes. ItÕs a very good point.

[00:21:37] JJ: ItÕs really a problem. Now, where we have had a huge problem, I would say, even as insurance is typically covered SLPs, we've had a problem on two counts. One, as you know, in much of rural America, and about two weeks, I'm on a podcast talking about the crisis of long COVID care in rural America. So, as you know, in so many areas, in rural America, there are not as many SLPs, as there could be or should be. So, there's a problem of access, and the other thing that continues to be a problem, huge problem, is that in many cases, our long COVID patients with cognitive impairment, that impairment is being accelerated by anxiety, by depression, PTSD, perhaps OCD, a range of things, and finding mental health providers these days, whether it's in Nashville, where I live, whether it's in Kalamazoo, Michigan, my hometown, wherever it is. Finding mental health providers that take insurance is really, really challenging. 

So, this is a difficulty. We have a lot of people who need mental health care. It would greatly help their cognition, and yet, there are almost no providers that take insurance and trying to pay $175 or $180 a week for psychotherapy is prohibitive for a lot of our patients. That's an issue that has to be resolved, I think.

[00:23:03] MBH: Especially, if they have to pay out of pocket, and they're not working. Yes, so a complicated conundrum. But okay, well, let's talk about the contributions of mental health issues to cognitive impairments in survivors of long COVID.

[00:23:18] JJ: Yes, I think it's not controversy, or at least it shouldn't be. In some circles, maybe it is. But it shouldn't be that things like anxiety and depression, if we just take those two, those contribute powerfully to worsening cognitive impairment, right? Which, in turn, I think, that worsening cognitive impairment accelerates the anxiety and depression, which in turn worsens the cognitive impairment, right? It's a vicious cycle, right? I'm impaired. I'm worried about the future. I get anxious. As I get more anxious, I make more cognitive errors, which makes me more anxious. It's really a vicious cycle.

One of the opportunities, I think we have, is trying to figure out how do we break that cycle? How do we interrupt that cycle? But I think the two things we see most commonly are anxiety and depression, and those impacts everything from forgetfulness to reaction time, to ability to engage, to willingness to participate in social settings, to work on finding problems. The whole range of things, and certainly the cognitive impairment in long COVID patients can't be and shouldn't be entirely explained through the lens of mental health. But I think a comprehensive approach will recognize that we're serving these patients best when we're addressing these mental health concerns.

Now, one big challenge, and I wrote an article about this recently, and it's published online in some form or other. But one big challenge is that a lot of long COVID patients are very reluctant to disclose mental health concerns. They're very reluctant, because I think there's such a stigma around those, and part of the reluctance is that many of them have seen providers, some well-meaning, maybe some not. Most well-meaning though, they've seen providers who have said to them, this is really all in your head. Some version of, I think this is all in your head.

Once someone hears this is all in your head, they're not in a hurry to go see another provider and say, ÒHey, I've got anxiety. I've got depression.Ó Because they're worried that once again, they're going to be dismissed. So, one of the things I've learned is that it takes some time, takes some effort, and it takes a relationship that is really trusting and vulnerable before many long COVID patients are willing to say to me, ÒYes, I'm really anxious.Ó Because they're afraid that that's when the gaslighting will start up.

So, I think one thing that the good SLPs, all of them good that I've worked with, have done with patients that I've appreciated is, they create an environment that feels safe for these patients to say, ÒBy the way, I'm really feeling anxious. By the way, I'm really feeling depressed.Ó Often as that anxiety is addressed, or that depression is addressed, or even that PTSD is addressed, not surprisingly, the cognitive functioning greatly improves.

[00:26:37] MBH: That is good news. So, anxiety, depression, PTSD, OCD, what can you say about preexisting conditions in long COVID? Are you finding that many survivors have these preexisting conditions? Or that this is new with the diagnosis?

[00:26:54] JJ: Yes. It's a great question. There certainly is a lot of literature. If you look at half a dozen studies or so that have been published in the last two years, there certainly are multiple studies, there certainly is a lot of evidence that would suggest that people with long COVID have disproportionate amounts of preexisting mental health problems, often in the anxiety and depression domain. How exactly that predisposes them to develop long COVID is a complicated question. I don't know exactly the answer. But if the question is, does that seem to be a risk factor? The answer certainly is yes. It's clearly a risk factor.

Beginning, I think, to try to have conversations about the role of mental health concerns, as early as one can, with long COVID survivors is really important, because as I noted, when we can address these issues early, sometimes we can have certain problems off at the pass, and I think those are really important conversations.

The other thing that we've noticed in more than a few cases is that as somebody develops long COVID, they lose their job, they lose their resources, they become more isolated, some of them resort, not surprisingly, to addictive behaviors. They start drinking more, let's say. Or they perhaps weren't drinking at all, now they are. And that in turn contributes to problems with performance at school, problems at work. So, that's another example of an area where a mental health intervention can be really powerful, where you're using alcohol in a way that is understandable, but harmful. We're going to address that, as you learn to decrease that, the cognitive problems associated with that are going to diminish.

[00:28:58] MBH: Well, and if you look at the situation, lost your job not feeling well, having cognitive issues. There's certainly some risk factors for developing depression. Then, if you pile a long-term hospital stay on top of that, for some patients, you can be looking at the PTSD as well. Can you talk a little bit about your work with long-term hospital patients who have been Ð I guess, long term, would that be 30 days or more is considered long-term?

[00:29:33] JJ: Well, I don't know if there's a clear definition, but the group that you're referring to would be people who are critically ill in the ICU with COVID. Sometimes these patients are in the ICU for 15 or 20 days. Sometimes they're in the ICU for 50 or 60 days. And they're a really interesting and a lovely group, I have to say. I mean, I really love working with them, have worked with ICU survivors for almost 20 years before COVID. The cognitive problems they develop are a little easier to explain.

We continue to search a bit for what the mechanisms are that explain what I'm going to call brain injuries in the context of long COVID. Is it inflammation? What exactly is driving these problems and people who were not very sick? I think that's an open question. But in people who are critically ill in the ICU, there are a lot of obvious ways to get to a brain injury. As I noted before, there are adverse cognitive consequences of being on a respirator for 5, 10, 15, 20, 30, 50 days. There are adverse cognitive consequences related to having massive doses of sedatives given to you, to knock you out effectively for weeks at a time when you're in the ICU. There are cognitive consequences to being delirious in the ICU.

So, our patients who were critically ill in the ICU, they look a little more classically brain injured, if you will, and their cognitive problems have been well documented. Back in 2003, I published what was the first paper that I wrote on this topic, a colleague of mine, Ramona Hopkins wrote a very first paper looking at cognitive outcomes in ICU survivors in 1998. We followed it up with that in a large, kind of a famous paper in JAMA 2013. But the literature says that, in general, if you've been critically ill in the ICU, one in three patients who fit that bill have meaningful cognitive impairment, that often is about as severe as we would see in a mild to moderate traumatic brain injury. It doesn't quite look like that clinically, but very severe.

So, these patients are really interesting. One thing we note in them a lot, and I talk about this a lot in my book, we notice struggle, certainly. But we also notice a lot of post-traumatic growth, which is a concept of PTG that I think people don't talk about quite enough. We talk about post-traumatic stress disorder, PTSD, all the time. But PTG is this idea that a subset of people experiences the trauma, and their life actually changes for the better due to that struggle. When it happens, Mary Beth, itÕs really beautiful.

[00:32:27] MBH: I actually have to be completely honest, because I already came clean and said I didn't finish the book. So, I don't know if you mentioned that in the book. But I've never heard that term before, and that is really enlightening. Can you talk a little bit more about that? 

[00:32:39] JJ: Yes, I'd love to. There is a chapter, it is late in the book. So, about post-traumatic growth, and in it, I tell a story of a young woman, I'll just call her Laura, for argument's sake. And Laura was an international aid worker. She was in a remote country. She developed malaria. She was life-flighted, through a series of life, life-flighted to Vanderbilt in the ICU, young woman in her mid-20s. And on a ventilator for long time, profoundly critically ill, had a lot of problems with circulation, and survived her critical illness, barely. In the process, lost most of the toes on one of her feet. They had to be amputated. She struggled in the way that people do with that. We stayed in touch. She went back to this Central American country where she lived.

About two years after leaving the ICU, I got an email from her one day that had an attachment. I thought, how lovely, I've heard from Laura, and I clicked on it. It was a video of her surfing. It was a video of her surfing with five toes and one foot with two toes. She had taken this on as a goal, and she included a little comment that said, ÒSometimes people don't just survive after a critical illness. Sometimes they thrive.Ó I was tearing up as I was reading this email. She's so sweet and her story is so powerful.

But it's not unique to her. We fairly regularly hear people talk about the idea that the struggle, it's not the trauma is good, by the way. But the struggle of dealing with it and all the repercussions for some people enhances their gratitude, changes their perspective, gives them a unique sense of spirituality, often a sense of purpose, and when that happens, it's really powerful. It's a sight to behold and we're trying to figure out, Mary Beth, I'm not the only one. I mean, many of us are, but we're trying to figure out if this is something that happens to people, and if it is, how do we facilitate it, right? Can it be taught? Can it only be caught? How does one go about fostering in people post-traumatic growth? That's to be determined. But I think that's an important goal in the mental health field, to try to figure out how to foster in people post-traumatic growth.

[00:35:11] MBH: Mm-hmm. That is very powerful. Thank you for sharing that. As you describe it, I have heard of that concept and have known of that concept, but I never have heard it called post-traumatic growth. That makes a lot of sense. That is, I love the way that you said, can it be taught or caught? Hopefully, for those who don't catch it, it can be taught. 

[00:35:37] JJ: Yes, I think one key here, and I know we're moving a little bit away strictly from cognitive rehab to more philosophically. But one key component here, I think, is that when people can make sense of a hard situation they're in. When they can find a way to make meaning of that, whatever that meaning is, they do better. I'm a spiritual guy, I'm a religious guy myself, I have a notion of how to make meaning of the challenges in my own life. I don't want to impose that on other people. Sometimes, the meaning people find is explicitly religious. Sometimes it's not religious at all.

But, however one frames it, when people can find a way to make some meaning of what happened, that often is a really potent step that they're taking psychotherapeutically.

[00:36:32] MBH: Well, very interesting. Yes, we did digress, but a good digression. So, let's go back to the cognitive impairments and how, we as SLPs, can help. So, what is your protocol for working with long COVID survivors in neurocognitive retraining?

[00:36:49] JJ: Yes, my very favorite approach, and maybe it's yours. And maybe it's the approach your colleagues love, or maybe one of them. My very favorite approach, and if you force me to choose one, is goal management training, GMT. I know there is a general set of principles that might fall under the rubric of GMT. But there also is a very specific protocol developed by Brian Levine at the University of Toronto, Ian Robertson at the University of Dublin, and Trinity College, Dublin, I should say, and a few others. There's a specific protocol that is GMT.

We have found it highly effective, both with our ICU survivors long before COVID, and with our long COVID survivors with cognitive impairment, and GMT orients around a lot of concepts, one of them is more psychological mindfulness. But one of them is this simple concept, stop, and think. The idea here is we're teaching people to recognize the situations where they are particularly likely to make cognitive errors. In the language of GMT, these are called cognitive slips, slip-ups, cognitive slips.

So, we teach people to try to begin to understand when are you likely to make cognitive slips? What are the scenarios you're likely to make them in? What are the things that you're starting to notice before you're prone to make a cognitive slip? As people develop that awareness, then they can say, ÒI'm going to make sure I'm going to be deliberate in ensuring that I'm not going to make a cognitive slip today.Ó Because today is the day that I'm likely to make one. Maybe today, I shouldn't make a big decision. Or maybe today, I should enlist my wife or husband to help me out. Maybe they need to go to the doctor with me because IÕm really stressed today. When I'm really stressed, I'm not likely to remember, right?

Not too long ago, I was at the gas station near our house in Nashville, and I was in a hurry, and I think I'd had an argument with my wife as I was leaving the house, and had to corral the dog, and I was running late for a meeting, all these constellations of factors. I was really frustrated. I pulled up to the gas pump. I put the pump in the car, and I walked in, I paid for the gas. I got in, drove away, and I pulled the hose right off the gas pump. Pulled it right off the gas pump. Left it in my car. Why did I do that? Because I was stressed, because I was rushing, because I was angry, because I was hungry.

So, a lot of GMT is teaching people what are those scenarios where you're particularly likely to make errors, and how can we offset them? That's not the only component of GMT, but that's the one that I particularly like, stop and think.

[00:40:02] MBH: Stop and think, GMT. Thank you. That is very good point. Very helpful for so many of our cognitive patients, especially those survivors of long COVID. So, let's talk about some compensatory methods as well.

[00:40:17] JJ: Absolutely. Often, lists are things that we rely on. Those would be common. I do consider GMT a form of compensatory cognitive rehab. It's a little different, and that it has a little more of an internal locus than an external locus. But I think at the end of the day, it is really a compensatory method.

Another thing we do often, particularly for our folks with executive dysfunction, we help them take complex problems, break them down into digestible bits. That is really helpful. We often augment the compensatory approaches with efforts at neuroplasticity. We have had good success with a proprietary video game called EndeavorRX. ItÕs FDA approved for use in the treatment of attention deficits in kids with ADD and ADHD. Basically, you play a video game, and a theory at least, is that that leverages neuroplasticity. It's a little bit debatable, but in many of our patients, we have our SLPs engaged with patients as a primary strategy, engaged in things like GMT, and compensatory approaches, and we're trying other approaches like leveraging neuroplasticity, in some cases, medication-based strategies. There's some evidence, in particular for the use of medications like guanfacine, which is a non-stimulant medication often used for ADD and ADHD, some of our patients have done well with that.

But far and away, the most effective tool for enhancing cognitive functioning in our patients is traditional compensatory cognitive rehabilitation, and that combined with mental health interventions.

[00:42:19] MBH: Excellent, excellent. We do have a question. Could you please repeat the name of the video game? Someone Ð

[00:42:24] JJ: Absolutely. ItÕs called EndeavorRX. I'll take another second to mention a little bit more about it. You need a prescription to access it, and the prescription basically is an app. It's an app. That app is good for 30 minutes of play, five days a week for one month. It's not covered by insurance. Some patients can afford it, others can't. Some patients find it helpful, some don't. I think if you have patients who are not worried about cost, something like this is potentially a useful adjunct.

But I think at the end of the day, beyond the shiny toys and the bells and whistles, what helps people the most is that classic, compensatory, cognitive rehabilitation, similar to what you do for someone with a brain injury. That's what improves functioning.

[00:43:22] MBH: Okay, excellent. All right. Well, one of the big themes in your book and in your work is acceptance. So, tell us the role of acceptance in survivors of long COVID.

[00:43:36] JJ: I think it's hard to overstate the importance of acceptance. Mary Beth, I talk in the book a lot about my own journey with acceptance, and I don't know if you have gotten that far or not.

[00:43:51] MBH: I have.

[00:43:52] JJ: But my own journey with acceptance Ð you have. My journey with acceptance is that in 2018, I was diagnosed with OCD, and it really came quite out of the blue during a really stressful season in my life, and it caught me completely off guard. Not unlike the way that long COVID has caught patients off guard. I went to see a psychologist, a great one. I said, ÒWhat is this?Ó She said, ÒIt's OCD.Ó I wasn't happy about that. And then I said, ÒOkay, that's fine. How do we get rid of it? I want to get rid of it right away?Ó She said, ÒWe're not getting rid of it right away. I'm not sure we're even getting rid of it at all.Ó I spent probably the first year or so doing everything but accepting that. Finally, a year in I began to realize that this was my reality, whether it continued to be or not was up in the air. But it was my reality and I could deny it or I could find a way to live with it and I chose thankfully to embrace the idea that I could live with hard things, right? I could live with hard things, and function with hard things.

So, one of my closest friends who's an SLP, she and I were talking the other day, and she said, ÒI almost think that I should be called a cognitive coach.Ó She said, ÒI'm not, but I almost think I should be called a coach.Ó And I said, ÒWhy do you say that?Ó And she said, ÒBecause I do a lot of strategizing with people, a lot of reframing with people, that goes beyond strictly speaking cognitive rehab.Ó One of the things that I think she does with people is very akin to therapy. She's effectively doing therapy with her patients, and she is all the time helping them realize that there may be a way that they can accept some new realities and find a way to make peace with those.

I think it's really important. I think where you start, is inviting people to entertain the possibility that they could get to a place of acceptance, right? They're not Ð it's not so simple. You can't say, ÒHey, it's Monday evening at nine o'clock, and by 10, I want you to accept this.Ó It doesn't work that way. It's a long process. You start by inviting people to consider it. As they get to the place of acceptance, we often see really profound transformation.

[00:46:28] MBH: Well, and also, that transformation leading to that growth. So, it sounds like acceptance is kind of the first step in leading to that post-traumatic growth that you mentioned earlier.

[00:46:41] JJ: Absolutely. It's so important, and I think, again, it speaks to the fact that, although SLPs are not strictly speaking psychologists, they're not strictly speaking counselors, so much of what you all do, I think, is what a good psychologist would do, right? It's not just teaching techniques and strategies. ItÕs coming alongside someone who's really hurting, and finding ways to help empower them. Acceptance is one of those ways that you can really help empower.

[00:47:13] MBH: Yes, and of course, counseling regarding cognitive communication disorders, or speech disorders, is part of our training. But of course, in some cases, it's a bigger part than others.

[00:47:25] JJ: Yes, I think that's right. I think Ñ I was on Fresh Air, on NPRÕs Fresh Air. It's been three or so months ago now. While on Fresh Air, I talked a lot about SLPs. I got so many emails, I think, I probably got 100 email emails, and I got a note or two, or maybe five, actually, from some SLPs, around the country very sweetly. They said, and I don't know if you agree with this, but they said, people don't talk enough about SLPs, even people in the healthcare space, they don't recognize enough. They don't know, often enough, the contributions that SLPs make. I do think, to me, long COVID has really highlighted that, because time and time, and time, and time again, when I talk to a neurologist or a primary care provider or an internist, I say, I think the first step should be, you need to refer this patient for cognitive rehab to an SLP. And very often they say, ÒWell, they don't really have a speech problem, why would I do that?Ó

Then, we have a conversation. But I'm really thankful for podcasts like this because I think hopefully, they help raise awareness of the fact that you don't have to have a speech problem. You don't have to have aphasia, for instance, to benefit from seeing an SLP. But I think there still are a lot of healthcare providers that have that opinion, and I'm really trying hard to change that.

[00:49:07] MBH: Well, I do appreciate that recognition and trying to change it. As a matter of fact, the first person who I interviewed for this podcast, my first episode, she wrote a book about that topic, actually. I think it was called, But My Speech Is Fine! People don't Ð but my speech is fine. I don't need a speech-language pathologist. Maybe the name speech-language pathologist is misleading, and maybe in future generations of our profession adopt a slightly different name. But to incorporate the cognitive rehab in that, you are correct. Many people don't understand that that is a part of the discipline and a very important one. So, thank you for recognizing that. 

[00:49:52] JJ: Yes, I think, well, you're very welcome. I do think what I have found increasingly, is that there are large numbers of people with long COVID from all over the world who have become big fans, frankly, of SLPs. Because they have noted how thoroughly their lives have really been changed, right? That's not an exaggeration. I mean, many of them have told me that their experiences with an SLP had been really game-changing. I think that's rooted, Mary Beth, in the fact that so many of our patients have told us, and research has supported this, too, that if you ask a person what is the part of you, like, what is an ability that you want to preserve the most? What is the ability that if you lost it, it would be the most catastrophic?

I think if you ask patients that, or not even patients, the man on the street, right? I think people would say, it would be my brain. If I lost the ability to think, my body could erode. But if my brain was still intact, people will say this, I think I could be okay. But if my brain is not intact, I don't have much. I think that's what many patients would say.

So, against that backdrop, it's beautiful when you see people transition to the place where they say, ÒI was really losing it. I thought I had lost all of my cognitive ability and now it's back.Ó It's really lovely and you've got an army of long COVID patients, I think, advocating for SLPs. I see it on Twitter every day now and it's really beautiful.

[00:51:32] MBH: Thank you. And we are happy to help. So, let's talk a little bit, we have a few more minutes left. And of course, we started at 8:30. So, we will be going till at 9:30. We have a few more minutes. I want to remind everyone that we'll be happy to take any questions, and they can put those in the chat. Let's talk about current research as it relates to cognitive rehab in long COVID.

[00:51:55] JJ: Yes, thank you. There are a number of studies going on, not as many as we would hope, and some of the studies are focusing on things that are interesting. But I think at the end of the day, perhaps not as consequential. The NIH funded something called the recovered trial, some of your listeners might have heard of it. And the recovered trial is kind of an umbrella of studies the NIH has funded to try to help improve long COVID. They just announced publicly about two weeks ago what the recovered trials were in the cognitive arena of long COVID. None of those, unfortunately, involve kind of classic compensatory cognitive rehab. I'm really sad about that.

I think it's partly because they're very interested in interventions that could be scaled, and as you know, if there are computerized virtual interventions that everybody and their brother could do from home, those are more easily scaled. So, they chose Ð one of the interventions they chose was a computer cognitive training program called Posit Science, which are BrainHQ. Some of your listeners may be familiar with that. I think BrainHQ is actually great as far as it goes. But I think it was partly selected because it's really scalable. I think we need to do more in this classic cognitive rehab space. But we are doing two studies, even now, involving goal management training, in one case, kind of a modified approach. A lot like GMT in another case. Those don't entirely involve long COVID patients, but some of them. We just finished a trial using the game that I mentioned earlier. The Achilles game. I can't comment on the results of that yet. I don't have them.

There's research underway, but not enough of it, frankly. And I think until we have more, the default stance should be, and we didn't talk about this, but I think this is really important. Until we have more research, I think, the default stance for SLPs and neuropsychologists should be this. How would I treat an acquired brain injury? What would I do if someone came to my door with post-concussive symptoms, with an ABI, what would I do? Because I think you can make an argument that in many cases, that's what long COVID is.

The term brain fog has become part of the popular parlance when discussing cognitive impairment after long COVID. I think it's really unfortunate because I think brain fog kind of minimizes a bit what some people experience. I think if we call it a brain injury, which I think in many cases it is, I think we would get a lot more traction. And the thing that I discuss a lot with patients, with family members of patients is, ÒHey, if your loved one had a brain injury, what would you do?Ó You would send them ideally for cognitive rehab. If you sent them for cognitive rehab with a classic brain injury, and we're thinking of long COVID as a brain injury, I think that's what you should do.

So, what your colleagues would do for an acquired brain injury, I think, is what they should do for cognitive impairment after long COVID. The research will catch up. But in the meantime, treat it like an acquired brain injury. Treat processing speed deficits in long COVID, like processing speed deficits. Treat attentional deficits like attentional deficits you would have treated before long COVID. I'm noting, by the way a question, the person that would write a prescription for Endeavor, for a cognitive patient has to be a physician. It could be any physician at all. It could be any physician, but it has to be a physician. I will send you a link, information and a link, for how one would have a physician prescribe EndeavorRX, and you can share it with your team.

[00:56:16] MBH: Okay, thank you. I'm curious, insurance won't cover it.

[00:56:20] JJ: They won't.

[00:56:20] MBH: Why is it a prescription-only program?

[00:56:24] JJ: Yes, that's a really good question. They're coming out with an over-the-counter version, and I think it is called EndeavorOTC. Endeavor over the counter. So, whether that is very similar or different to the prescription program, I'm not sure. I think it's a decision this company has made. The other option in the same space is this program, BrainHQ, which purports to do something kind of similar, purports to leverage neuroplasticity. And whereas EndeavorRX is somewhat expensive, BrainHQ is quite affordable. So, probably $50 a year or so.

Now, experts have very different views about computerized brain training. Some people hate it, and think it is in the domain of snake oil and charlatans and all that. Some people like it, I'm not sure how many people love it. I have warmed a little bit to it as a complementary augmenting strategy. But it never really is the first thing that I would do.

[00:57:33] MBH: Yes, yes, I agree. Okay I know, we're just about out of time. We have just a couple minutes and I know you brought a few different case studies. So, can you pick one of those case studies? I know you've mentioned some throughout, but if you can think of a good case study.

[00:57:47] JJ: Yes, sure. I'm thinking of a woman in Chicago that I know who had quite mild COVID, and manage kind of a mental health consortium, had a lot of employees, had a lot of patients she worked with, had really striking executive dysfunction, and got goal management training. Actually, got goal management training, learn the stop-and-think techniques. Along with those, a reliance in particular on lists. Here's the other piece that is important. And modifications, which I think are really important to success, and leaned into that cognitive rehab, and is working effectively at a really high level.

I mean, it's possible. It happens fairly regularly. But I think the accommodations piece, we haven't talked much about, is actually really, really important. One thing I often do for my patients that is particularly helpful, is accommodations, right? We request accommodations. And when people get them combined with cognitive rehab, in particular, in my experience, goal management training for people with executive dysfunction, they get a lot better.

Now, COVID is fairly new. So, I think the jury's still out on, does everybody get better? Does no one get better? Who gets better? Who gets worse? Clearly some people improve. How to frame realistic outcomes is a good question, right? Can you expect to be working a year from now, your very best with cognitive rehab? Can you get enough of your skills back to go back to work? I mean, we see a range of different outcomes and it's pretty individual, but with accommodations and a proper cognitive rehab, often our patients are quite functional again, which at the end of the day is the goal.

[00:59:43] MBH: That is the goal, and that's good news. Well, Dr. Jackson, we so appreciate you spending time with us tonight and working with SLPs, and giving our profession some good PR out there. Most importantly, we appreciate your work with long COVID patients. So, thank you very much for being with us tonight. Any last comments?

[01:00:07] JJ: Yes, I'll make a final comment. I'll make two comments. One, if people have questions for me that they'd like to engage; if they want to send me an email, I'm glad for us to have a conversation. If people would like to be added to a list of therapists we can refer to, I would also appreciate that. We get probably one email every week or every other week from someone around the United States is looking for an SLP in Virginia, Maryland, Washington, California, Georgia, you name it.

So, if some of your friends would be interested in reaching out to us and making themselves available, it's very likely we could refer patients. The other thing I would say, and I found out that I'm not so good at this. I don't like promoting my book, really. It doesn't feel quite right to me to do that. So, my publisher has said, you might be a little bolder, maybe, in talking about your book. I would invite people if they're interested to take a look at my book, because I think it could be really helpful. And I think it could be a good resource for many of your listeners. So, if you're interested, pick up a copy. If you have questions about it, please reach out to me. If I can help you all in any way, it'd be a great privilege for me, Mary Beth.

[01:01:27] MBH: Okay. Well, thank you very much. The name of that book is Clearing the Fog. Also, a good resource for our patients with long COVID, as well as therapists. So, thank you very much. I look forward to talking with you again, Jim.

[01:01:42] JJ: It will be my pleasure. Thank you. Bye-bye.

[01:01:44] MBH: Thank you. Take care.

[01:01:45] JJ: Bye.

[END OF INTERVIEW]

[01:01:46] MBH: Thanks for joining us here at Keys for SLPs, providing keys to open new doors to better serve our clients throughout the lifespan. Remember to go to SpeechTherapyPD.com to learn more about earning ASHA CEUs for this episode and more. Thanks for your positive reviews and support. I would love for you to write a quick review and subscribe. Keep up the good work.

[END]
KFSP 71		Transcript

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