Addressing Cognitive Challenges after Transplant and CAR T-cell Therapy

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Addressing Cognitive Challenges after Transplant and CAR T-Cell Therapy

Presenter: Thomas Bergquist, PhD, ABPP, FACRM, Mayo Clinic

May 2, 2024

Presentation is 43 minutes, followed by 17 minutes of Q&A

Summary:  Cognitive challenges, especially memory problems, can develop after a bone marrow/stem cell transplant or CAR T-cell therapy. This presentation describes strategies that you can use to address memory problems and improve your quality of life. 

Key Points:

• Cognitive rehabilitation strategies can help improve performance for people experiencing memory problems after a stem cell transplant or CAR T-cell therapy.
• Cognitive rehabilitation can help improve thinking skills in two basic ways. One is by strengthening old ways of doing things. Another is by establishing new ways, or work arounds, to compensate for thinking skills that might be impaired.
• These strategies often involve changing the way you are used to doing things. If you find that difficult, a counselor skilled in working with people living with chronic health problems can help.

Highlights:

(04:19): Cognitive rehabilitation provides a way to improve impaired cognitive functioning. It is a type of therapy based upon an assessment and informed understanding of a person's cognitive challenges.

(06:05): Chemotherapy can affect attention, memory, processing speed and executive functioning.

(07:15): Your memory works like a filing cabinet.  There's the input, which requires attention, concentration and some elements of executive functioning. We put the input in the file drawer and we store that information until we want it.  We retrieve it later when we recall, or take out, that information from where we've stored it.

(08:09): External compensation is a technique that uses things outside your head to help you recall information.  It can help if you're having difficulty with learning, recalling and organizing information. It includes using electronic devices or a memory notebook.:18:48

(18:48): Internal compensation techniques help you learn and recall information by associating something new that you want to remember with some that’s familiar to you..

(29:40): A helpful strategy to learn and recall information, particularly written information, is called PQRST:  Preview information, ask Questions about the text, Read it, State the answers and Test your recall.

(31:00): It’s common to resist changing the way we are used to remembering things, but making changes with the help of cognitive rehabilitation strategies will improve your quality of life.

(34:25): If you work to manage your memory problems, you’re going to be more independent and in a better mood.

(36:18): Family members can use help their loved one with their memory problems either by telling them the information they are forgetting, or by giving them a clue to them remember it on their own.

(37:36): Other things that can enhance cognitive functioning include good sleep hygiene, good pain management, interacting with the world around you, regular exercise, and being informed about possible side effects of medications you are taking.

Transcript of Presentation

(00:01): [Susan Stewart]:  Welcome everybody to the workshop, Addressing Cognitive Challenges after Transplant and CAR T-Cell Therapy. My name is Sue Stewart and I will be your moderator for this workshop.

(00:13): Before we begin, I'd like to thank Jazz Pharmaceuticals whose support helped make this workshop possible.

(00:20): Introduction of Speaker. It's now my pleasure to introduce to you today's speaker, Dr. Thomas Bergquist. Dr. Bergquist is a neuropsychologist and part of the Brain Rehabilitation Team at Mayo Clinic. He's also an Associate Professor of Psychology in the College of Medicine.

(00:41): Board-certified in clinical neuropsychology, Dr. Bergquist is a co-investigator on a study of the use of the internet to deliver cognitive rehabilitation services to rural populations. His principal research interests include rehabilitation following brain injury, and coping with disability. Please join me now in welcoming Dr. Bergquist.

(01:06): [Dr. Thomas Bergquist]:  Overview of Presentation. Well, hello everybody. Thank you for that very kind introduction. I'm very thrilled, even honored, to be with you all and present on the topic that's near and dear to me: dealing with cognitive challenges that occur after transplant and chimeric antigen receptor (CAR) T-cell therapy. Specifically, we're going to focus on what can be done to manage these cognitive challenges after transplant, and what evidence exists to support those different strategies.

(01:37): If you’ll indulge me here a little bit about where I'm from. Mayo Clinic is in Rochester, Minnesota, in the middle of the great upper rural Midwest. You can see one of the icons of our city, besides Mayo Clinic, in the upper left. We're very proud of our corn cob water tower. Even when the plant that this water tower was part of - a food processing plant - closed, there was successful lobbying to maintain this as a proud city landmark.

(02:10): In the right you can see the entrance to Mayo Clinic. In the middle of the second row is a statue based on a photograph of Dr. Will and Dr. Charlie, the two brothers that founded the Mayo Clinic almost 160 years ago.

(02:30):  Overview of Talk. Today we will be discussing types of cognitive strategies that can help you address any cognitive problems you might be experiencing. How do these strategies help you enhance your day-to-day performance? What are some benefits of managing your cognitive problems? What do you do if you're having trouble making the changes needed to manage your cognitive problems?

(02:56): What we will not be discussing, in part because it was discussed very well last year in a talk that was given by Dr. Michael Parsons from Mass General Hospital, is evidence of the impact of chemotherapy on cognitive functioning. I'll describe that briefly, but he had a wonderful talk describing that in some detail.

(03:19): The other things I'm not going to address directly are the effects of various medications on cognitive functioning, or pharmacologic interventions to enhance cognitive functioning – and there are some that can potentially do that.

(03:35): The reality is that chemotherapy can change cognitive functioning. This information is mostly taken directly from Dr. Parsons’ talk from last year. There are multiple brain areas affected, including the nerve fibers that connect brain regions. One area that is particularly at risk is the hippocampus, which is responsible for new learning and memory of new information. Another point that Dr. Parsons covered well is the widespread effects that suggest there is toxicity throughout the brain, with particular areas being more vulnerable than others.

(04:19): Cognitive rehabilitation provides a way to improve impaired cognitive functioning, and is what we're going to focus on today. Cognitive rehabilitation is a type of therapy based upon an assessment and informed understanding of a person's cognitive, or thinking, challenges.

(04:36): Cognitive rehabilitation can help improve thinking skills in two basic ways. One is to strengthen old ways of doing things. We'll focus more on another way, in part because it can be even more effective, which is establishing new ways, or work arounds, to compensate for thinking skills that might be impaired.

(05:02): Is there evidence to support cognitive rehabilitation? The short answer is yes, there's a lot of it. I could spend hours discussing what all the evidence says, but here are just several sources. These are contained in a reference list at the very end of the slides, so you don't need to worry about writing these things down. On the left are three textbooks, the bottom of which I was a contributor to. I have nothing to disclose here - I don't get any money from this - but I was a contributor to this major textbook published by the American Congress of Rehab Medicine. The other two are outstanding textbooks, mainly designed for practitioners applying cognitive rehabilitation.

(05:40): On the right is the evidence on which a lot of these textbooks were based. There are three or four general categories of evidence that have been produced. One is from a group from Australia, the INCOG Group. The second one is a group from the American Congress of Rehab Medicine that I've been a part of. We publish many evidence-based reviews. The bottom two are from a group of speech language pathologists and occupational therapists.

(06:05): Common cognitive changes due to chemotherapy. There are four areas of change that have been identified in the literature. They are attention, memory, processing speed and executive functioning. It would take a long time to focus on all these different areas in terms of what can be done. 

(06:32): You'll recall that in an earlier slide I said that the hippocampus, in particular, was impacted by chemotherapy and treatment.  That area has a lot to do with memory.  I'm going to focus on memory functioning today because of its importance in day-to-day life, and because of the impact of chemotherapy on that particular area of functioning.

(06:58): How does memory work? There's a lot of research on how memory works - I actually did my dissertation 30-plus years ago on how memory works - but here's a quick summary of it.

(07:15): First, there's the input - the learning that occurs. You'll notice in that file there that it requires a lot of attention, concentration and even some elements of executive functioning to learn new information. We put that in the file drawer and then we store that information until we want it.  We retrieve it later when we recall, or take out, that information from where we've stored it.

(07:40): The old saying people often use in information technology (IT) is, ‘garbage in, garbage out.’ The degree to which you can recall information is, to a large extent, based on how you've learned and stored it in the first place. If you have trouble recalling it, it's not just a recall problem. It can also be a problem with how it was learned in the first place. Some of the strategies we're going to talk about help in both of these areas, to help you learn that information effectively initially, so you can recall that information effectively when you want it later.

(08:09): There are two approaches you can take to help if you're having difficulty with learning, recalling and organizing information. One of them is external compensation, which refers to things you do outside your head that help you recall information, besides just thinking about it. There are two basic techniques to do this. One is using electronic devices, such as a smart phone, an iPhone, or some other kind of phone.

(08:51): The second technique is to use a memory notebook, which is a notebook that has various sections in it based on what you want to remember.  I'll describe that in a few minutes. Those are the two basic techniques that can be used in terms of external compensation.

(09:08): Internal compensation is something you don't do with an outside device. It is something that you do just internally. This can include association, organization, and elaboration techniques. I'm going to describe these more, and actually you're going to have to do some work here. I'm going to have you use one of these techniques so you can see how effective they can be.

(09:33): Now, this isn't a false dichotomy. In other words, you don’t use one or the other. For most people, we're probably going to use both of these to some extent, depending on the situation and depending on the memory problems we're having.

(09:49): We're going to start with external compensation and some examples of that. External compensation involves using a device to help you learn, retain, and recall information that you might otherwise forget. It can be helpful even in persons with significant memory problems.

(10:13): I've worked with many individuals who have such severe memory problems that they have trouble remembering the day or even remembering family members. But over a period of time and with a lot of repetition, working with a therapist that is skilled in this area, they can learn these external techniques to the point that they can become surprisingly independent with their memory functioning, despite those significant memory difficulties. Sometimes people even refer to this as their external brain because, in a way, it's compensating for the memory problems they're having.  In doing so, it is allowing them to be much more independent and functional in day-to-day life.

(11:00): Now, drilling down on different kinds of external devices. There are notebooks, other kinds of planning systems, iPads, laptops, smartphones, and computerized systems, which of course can network with iPads and smartphones. There are auditory and visual systems and task-specific aids. It would take, again, a lot of time to get into a specific list of all these things.

(11:27): There used to be a bunch of different devices, but the way things have evolved, smartphones have co-opted all these things. In other words, you can record things, keep a calendar and put a to-do list on your smartphone. You can save people's addresses, names and even their pictures on your smartphone. Many times, you can have all these in a central location, negating the need for different devices. But, whatever you do, there's not one size that fits all. It's good to have something that's designed to really help you, based on your situation and needs.

(12:09): Most people these days use a smartphone, but not everybody does. If you've never used one, and it's really foreign to you, then we really don't want you to have to learn something new when you're already having trouble learning new things because of your memory problems. If you're used to writing things down and doing it that way, then that's probably the way to go. We want to do things based on what works best for you.

(12:43): To choose the right device, ask the following questions.  What do you need to remember? Not everyone needs or wants to remember the same thing. For example, if you have trouble remembering the names of people in your extended family or new friends, you might do something different than if your need is to remember future appointments or dates.  You might want to do both of those things. Ideally, you can find all the information you want in one place, because then you only have to go one stop shopping.

(13:28): You want to do something based on your goals and preferences and based on the features and limitations of available technology. For example, if you're having difficulties with vision or hearing, there might be things that would work better or worse based on those particular needs.

(13:47): Where are you going to use it? Having a whiteboard in a central location in your home where you put information you want to remember is a wonderful device, but you can't take it with you. So if you want to remember something to do when you go to the store, you probably want to use something else. For example, if you have a smartphone, then you can take a picture of your grocery list written on the whiteboard and take that with you to the store.

(14:17): What is your familiarity with the device and its use? I've seen this many times. If you're having difficulties with keeping track of information and someone says, ‘Wow, I have this great app, this great thing,’ but it involves a lot of complex new learning, that might not be the way to go. Learning a lot of new information and techniques when you're already having difficulties with learning is perhaps only going to result in frustration. Instead, if there's something that you've already become accustomed to using, or something you're already comfortable with, then that's probably the way to go to help with memory in many situations.

(15:01): Here are some examples of a memory notebook. When we used to talk about a memory notebook, it was always a paper and pencil notebook. Real quick story. There was an NFL team, I think it was the Cleveland Browns.  In football, and in every sport, besides being athletically gifted, you have to remember a lot of information. I read a really interesting story in the New York Times where they were looking at all these electronic devices to help their football players, and of course the resources were pretty much unlimited. If there was an expensive thing, that didn't matter, they could buy it.

(15:44): And what they found after using all these devices with their players is, guess what? The thing that really worked the best for their players to remember all these new plays, names of coaches, names of teammates, everything else, was to give them just a good old-fashioned notebook and a few nice pens and have them write down the information and carry the notebook with them everywhere they went. That really worked better than any electronic device. I thought it was a really interesting thing that, even with all these wonderful electronic smartphones we have, sometimes the best way to work is just a good old-fashioned paper and pencil. I use that in daily life for a lot of things.

(16:19): You can see an example of a memory notebook in the right picture. That's the one that we have here at Mayo Clinic.  We produce our own books to give to our patients that they can use in daily life, because it seems to work.

(16:32): The information you might want to put in that is a to-do list, a memory log or a journal, your daily schedule, things you need to do, homework history and background. Also, things from the past you want to remember, handouts or things you've gotten as part of your treatment, part of your therapy. Also, important contacts for both family members and your medical team.

(16:47): Remembering to perform a future action is something that can be done with the help of external devices. ‘Bring a book with me that I want to share at a family gathering.’ ‘Tell a family member what I did today.’ ‘Oh gee, I did this thing but I can't remember what it was. I know there's something I wanted to tell you.’ How many times does this happen?

(17:14): First, you need the device, but you also need to develop the habit of using it. It can then help you store and retrieve information such as dates of upcoming medical appointments, names of medications, or questions you want to ask at your next medical appointment. You can use the device to help remember information from different activities you've done in the past, that you want to report to somebody. For example, activities from a family gathering that we had during the past weekend or reporting information from a work meeting.

(17:47): I work with a gentleman who has a pretty severe memory problem due to a traumatic brain injury he had over 20 years ago. I still check in with him periodically to make sure things are as they should be. When I ask him what's going on in his life, the first thing he does is pull out the paper and pencil book he uses, and he tells me what he's done last week, the week before. He has questions written down that he wants to ask me.

(18:20): He worked with our therapy team for a long time to develop the skills to do that. If he didn't do that, I'm pretty sure he wouldn't have very good recall of the questions he wanted to ask me or the things that have happened in his life recently. He writes down what we talk about so he can implement it. If he didn't do that, he probably wouldn't remember that either. He's developed the skill to use that external device to help him to do that. It helps him to be much more independent than he would be otherwise.

(18:48): We talked about external compensation. Now we're going to move on to internal compensation. In other words, doing it in your head. This works through the process of association, to a large extent.  You want to associate something new that you want to remember with something that's familiar to you. This can then help you to learn that information and recall it later when you need it.

(19:16): How do these this internal compensation strategies work? Well, we use mnemonics. That's a fancy word for techniques that aid with learning, storage and recall. Remembering information, in this case, without use of external compensation.

(19:31): It can be used with verbal information, like somebody's name. It can be used with nonverbal information like, the one that always gets me, ‘where did I park the car today?’ As I said earlier, sometimes the best external strategy is to use both of these different approaches. But if using internal strategies works for you, then you don't need external compensation.

(19:59): There are three basic categories of internal strategies. There are association techniques, elaboration techniques, and organizational techniques. We're going to go over all three of these.

(20:11): With regards to association techniques. One technique is called the visual peg method. Well, what the heck is that? It's items to be remembered that are linked with a standard list of peg words. Peg words are words that you've already learned together, which you already know.

(20:28): The method of loci is linking specific information with a visual reference.  Visual imagery is what we're going to practice together in a few minutes. You're going to try this out and we'll see how well it works.

(20:42): Visual imagery is linking information to a specific internal - in other words, in your head - visual reference. Absurdity, besides being funny, can really help you to remember things. Humor with high levels of even silliness can make associations much stronger. Remember, the whole premise of these techniques is associating things. By using a lot of humor, you strengthen those associations. They’re tying together more strongly, so when the time comes, you're much more likely to remember that.

(21:11): The first strategy is the visual peg method. Peg words are a list of things that you have memorized ahead of time. So, the bun, zoo, tree and door. Those are the words that you've already memorized. The new words are bread, hot dogs, soda and kiwis, like kiwi fruit.

(21:37): Say you want to remember these things when you go to the store. What you're going to do is you associate the word on the left with the one on the right. So, you put the bun and bread together, and you come up with an image that combines those two.

(21:53): To put the zoo and the hot dog buns together, you put the hot dog buns at the zoo. It might be kind of silly, but you're associating the new with the already familiar. The soda and the tree. It seems silly, but you have a picture of a bunch of soda hanging from a tree, because you already remember the tree and now you want to remember the soda. The kiwis and the door. You have a bunch of kiwi fruit either hanging on your door, or in your door to the point you're going to trip over them. You develop the image of the first word together with the new word. Now that takes a little work, but once you do it, you then remember those paired words together. That's how you use the peg word method.

(22:48): The next strategy is the method of loci. The basic definition is that you use a visualization of a familiar spatial environment to help remember. There was a reader called Cicero in classical Greek or Roman literature. He wrote a lot of things and he also gave these very long speeches that could last an hour or two. He used to remember his speeches by walking through the village that he grew up in. Each time he looked at a building on his right or left, he would pair one of the speech passages that he wanted to remember with a building. He used walking through a familiar village to enhance recall. Walking through somewhere is also known as a memory journey. You pair new stuff with this image of a place you know very well. As you're walking through it, you pair these things with that familiar location or scene.

(23:46): So the steps in this. First, you decide what you want to remember. Then you pick a place that you know well. Maybe that’s where you grew up, a hike you take through the woods, or a drive that you're really familiar with. To remember new information, you visualize walking or driving through that location, and associate each piece of information that you want to remember with a specific feature of the place.

(24:24): We used that peg method earlier. Say you had that same list of items:  bread, hot dog buns, soda and kiwis. Visualize that we're going somewhere. Maybe the first thing we think of is our neighbor's house where we grew up. We think of the bread piled all over on top of our neighbor's house. The hot dog buns. The next thing we see is another neighbor's house that looks different, and we think of the hot dog buns on there. Maybe the next thing we see is a road sign. We think of soda hanging from that road sign. The last thing is our kiwis. We make a turn to the right, and at that turn, boy, we have a pile of kiwi fruit. It’s using imagery with a familiar place, and associating those new things we want to remember to that place.

(25:09): The next thing we're going to do uses examples of imagery and absurdity. We're going to have you do a little homework here to see just how well this works. To make this work, we're going to use a facsimile of my identification (ID) card from way back when I was in college. I started college in the fall of '79 and graduated in the spring of '83. You do the math; you can figure out how old I am. I went to a school, believe it or not, that was called Gustavus Adolphus College, named after an ancient king of Sweden in a little town called St. Peter, Minnesota. I grew up in Minnesota as well. I was the class of 1983 and I was student ID number 122. And there's my last name, Bergquist. Bergquist is B-E-R-G-Q-U-I-S-T.

(26:11): Think of me. I'm on a quest to climb to the top of an iceberg. I'm on a quest even though it's really cold. I'm on a holy quest to get to the top of the iceberg. And here I am. I'm going up that iceberg. Even though it's cold, I'm sweating. I'm going up that iceberg, and oh my, I'm really journeying, crazy. Here I am. Why am I doing this? I'm going up that berg and I'm on that quest, and that's my name, Bergquist. ‘Berg-quest’. Change one letter. I'm on that quest to get to the top of the iceberg. So keep thinking about me getting to the top of that iceberg. There I am. I'm at the top and I've made it. Bergquist.

(26:55): For my student number. You can't see me, but I'm about 6’4”. I'm pretty tall. I was trying to get someone else to remember my student number so I wouldn't have to bring my ID everywhere. When they wanted to check my number, I said my number is 122, because I'm the ‘one who's too tall.’ 122. I'm the one who's too tall. One, two, two. The one who's too tall. 122, one who's too tall. So think of that. I'm Tom Bergquist and I'm 1, 2, 2. I'm the one who's too tall. In fact, I'm so tall, I hit my head on doorways. Think of me with bumps on my head, maybe an occasional drop of blood going down. Ooh, that's a gross image, but that's me. I'm so tall. I'm the one who's too tall. I'm the one who bumps into doorways. I'm 122. I'm the one who's too tall.

(27:35): There. Enough. So, we've had our example of imagery and absurdity to remember my last name, Bergquist, and my student ID number, 122, the one who's too tall. I think you can remember that.

(27:47): The next category is elaboration. These are the five Ws: who, what, when, where, why. Helping elaborate can help us remember things. If I'm trying to remember something that happened at an event, if I answer these questions, that can help me.

(28:18):  I can do this internally in my head, but it also might be good to use my external device. I can use these together to help me remember by writing in my journal section: Who was there? What happened? When was this? What was the date and time? Where was this? Why were we even getting together in the first place? If I answer all those questions, either in my head or writing them down, that's really going to help me remember this later.  I may remember even better by looking at where I wrote this down. And I will feel much better that I can remember that information at the time.

(29:00): One last category of these internal techniques is organizational techniques. My guess is that you probably used these to help you learn things in high school, or if you went into college. I used them all the time in classes that involved a lot of memorization, like anatomy or microbiology, to remember various nerves or that kind of thing. Here's one if you want to remember the names of the Great Lakes. They're Huron, Ontario, Michigan, Erie and Superior. To help you remember the first letter of all those names, it's HOMES. H-O-M-E-S or Huron, Ontario, Michigan, Erie and Superior. A lot of students use that to memorize a whole lot of things.

(29:40): Another strategy that's a great one that is used in tutoring or study skill classes is the PQRST. To make that stand out, I've made these all different colors. This is a self-instructional technique to learn and recall information, especially written information.

(29:59): First you preview the information to recall. This is like if you need to study a book to take a test on it later, especially if it's not an open book test. Preview the information to recall.

(30:08): Ask quick questions about the text. If this book is divided into different sections, you might ask the questions based on the different headings of the sections.

(30:20): After you've done all that, then you read the information to answer the question. So you don't even start reading it until you've previewed it and asked the key questions about the task.

(30:31): And then you state the answers. And if you can't answer the questions, read it again.

(30:36): Then you test yourself regularly. You ask yourself questions to retain the information.  You do all this before you ever take the test. Studies have been published on all these things I've mentioned. If you use these strategies, you're going to remember more information and have better recall. It's really going to help you a lot.

(31:00): Beyond these different strategies, the next question is, why would I make these changes? Why would I even use these techniques in the first place? How is it going to help me?

(31:12): I'm basing this discussion on several studies we did a few years ago. You can see the references at the bottom of your slide. Research has shown that, when you're experiencing memory problems, you might be in trouble if you measure your success by returning to the way you used to do things. In other words, if you think, ‘I don't want to have to write things down. I don't want to have to use these techniques. I want to remember things like I've always done,’ it might make things difficult.

(31:40): Our team just met with someone who had some memory problems, in part because of chemotherapy she went through for her breast cancer. She said, "I've never had to write things down. I never want to write things down." We said, "Well, if you want to go back to the way things always were, then you might be in trouble. But if you measure your success when you're experiencing memory problems by being open to doing things differently and using strategies which have been shown to enhance your memory or your thinking skills in other ways, then you're on your way." This is just a simple truth. This is also true for a lot of other changes that happen with medical conditions.

(32:29): Everyone knows that most of healthcare is about managing chronic health conditions. It's not always about curing things. Managing chronic health conditions oftentimes means changing how you do things, changing your lifestyle, doing things differently. If you can do that, then you're going to be much better.

(32:53): Next, neuropsychological evaluation and memory problems. I think there was a talk by Dr. Parsons last year about neuropsychological evaluation. That's the kind of evaluation that goes into detail about areas where you might be having memory and other cognitive difficulties. It can be really good at finding out where your cognitive problems might be. But research has shown that the memory or other cognitive problems shown on formal testing don't really determine how well you remember things in day-to-day life.

(33:28): Why is that? Well, what we've found is that how well you do is really determined by how good you are at managing your memory problems. Many studies show that is the case. Why is that?

(33:42): In part, that is because people have gone through rehabilitation. But it’s also partly because people just differ on how much they use memory strategies. Even if someone has memory problems, if they are in the habit of writing things down, referring to their notes, using strategies, that's going to be a better predictor of how well they're going to do in daily life than whether or not they have problems on testing. What we try to do in rehabilitation is help people develop the skills, strategies and techniques that are going to help them compensate for, or work around, their memory problems. That's why I'm encouraging you to do this.

(34:25): If you work to manage your memory problems, you’re going to be more independent and you're going to be in a better mood. Forgetting things, losing track of things, is very stressful. It's not much fun. You can probably see my picture. I don't have much hair to pull out, but sometimes it can cause you to want to pull your hair out. Your mood and your quality of life will be better if you're better able to manage your memory and other cognitive problems. That's well documented in the literature.

(34:59): This is a team sport. Having friends and family in your life who can help you with this can be really helpful. It can provide emotional support. It promotes using skills in day-to-day life. If your family is aware of what you're doing or the therapy you might be doing to help you with this, that's a good thing. It can reinforce the use of your thinking skills at home and elsewhere.

(35:22): You can use these strategies to help you remember to do the things you need to do to manage your health condition. Take your medications, eat the appropriate diet, be appropriately hydrated, have good sleep hygiene, whatever it is. You can improve your social life with these strategies by helping you remember crucial information about social interactions or remember to do things that are part of enhancing your social life, like getting together with people. I know many people that say, ‘I was supposed to get together with them, but I forgot to do it.’ This can help you remember to do that.

(36:01): I'm assuming we have some supportive family members here and you might be asking, ‘What can I do to help my loved one? Usually, I'm helping them remember things. I'm telling them things because they keep forgetting them. What can I do that helps them do it more on their own?’

(36:18): You can use different kinds of cues as a family member. You can use a direct cue. That would be a family member saying, ‘You need to write this down because later you're going to forget it.’ You might need to direct-cue them initially because they forget to do it.

(36:33): If you're queuing them to use a strategy that helps them remember, not just telling them what to remember, then you're enhancing their memory. You might need to remind them to use the technique, but by using that technique, you're facilitating their independence.

(36:52): What's an indirect cue? In this situation, the person kind of knows what to do, but they don't always do it. And so, you're telling them, ‘Is there something you should be doing to help you remember it later?’ They might say, ‘Oh yeah. I need to write it down.’ Hopefully, after a period of time of direct cues, and later indirect cues, the person with the memory problem will say to themselves, ‘Whenever I need to remember something, I record it. Whether I record it by writing it down or I record it another way, I need to do something.’ I kind of remind myself, as a self-cue.

(37:36): Are there other things I can do to enhance my cognitive functioning?

(37:46): Good sleep hygiene. Poor sleep is directly correlated with poor cognitive functioning. Anything you can do to promote good sleep will help you.

(37:55): Good pain management. Increased pain complaints by themselves can be distracting and cause difficulty with cognitive functioning, including memory.

(38:03): Interacting with the world around you. The more mental stimulation you have in your life, the more you're getting out of your comfort zone, getting out of your house and interacting with people, that's going to help you have a better quality of life.

(38:13): Regular exercise - being mindful of any medical restrictions you might have. In multiple studies, exercise has been found to enhance brain function significantly, particularly memory function. The hippocampus, the part of the brain that is really sensitive to the effects of chemotherapy and other things, is also very sensitive to an oxygen-enriched environment by exercise. So, the more you can exercise, again, being mindful of any medical restrictions you have, the more likely that’s going to help.

(38:44): Be informed about any medications you're taking and any possible side effects they might cause. There might be some things that could have a negative effect on your memory. I'm in no way saying you shouldn't take your medications, but it's also good to consider, ‘Oh, I'm having memory problems. It might be because I'm taking this medication. I need to take it, but that could be why.’

(39:06): Are there things you are doing that are getting in the way of doing the very things that will help? Be open to changes in your routine and new ways of doing things and be open to receiving assistance from others if it helps you to be more independent.

(39:24): Being independent is not the same as doing everything on your own. Being independent is being strategic about when you need help and when you don't. An approach that is not helpful is, ‘I just want to do everything like I did before. The only indication that life is good is when I can do everything like I did before.’

(39:42): Well, life changes. Medical and health conditions can change that. If you go down that road, that's very likely to lead to disappointment. If you view receiving any help from others as a sign of weakness, sickness and lack of independence, then that might be a big stumbling block. This doesn't just apply to cognitive changes.

(40:09): It can be helpful to identify any resistance to doing things differently. If I do find that I'm being resistant to change, I need to ask myself, ‘Is this resistance getting in the way of me making those changes?’ If I'm not able to make those changes on my own, even those changes that will help me, then I really need to consider getting professional help with that issue. There are many people, like me and other mental health professionals, who work with people with chronic health conditions who are having trouble making changes that will improve their quality of life.

(40:51): An example of what I would call the right and the wrong questions. By right and wrong, I'm not trying to make a value judgment. It's more about asking, ‘Are these questions helpful or not helpful?’ ‘Do I want to do this?’ versus, ‘Is this ultimately in my best interest?’ I might not want to do it, but yes, it's in my best interest.

(41:08): ‘Is this going to be hard? Yeah, it's going to be hard, but what are the consequences of me not doing it?’ ‘What do other people think of me?’ versus, ‘Is this going to help me meet my goals regardless of what other people think?’

(41:21): So hi folks, quiz time. Do you remember my last name and student number based on the things we did before?

(41:32): Maybe we can get to that in the question and answer section coming up in a minute. I want you to see if you can remember and see if that technique we talked about was of any value.

(41:42): Here are the references to that slide earlier with the textbooks and the reviews.

(41:58): Here's the summary. There's ample evidence of the value of cognitive rehabilitation to enhance performance in people experiencing problems with cognitive functioning due to a medical condition. Strategies can be external or internal. The strategies that you use should be based upon your situation and tailored to meet your individual needs. This fourth bullet point is a key point. Putting these strategies into practice can best be done by working with an experienced therapist.

(42:25): We work with many people at our clinic who are here because of treatments they've had related to a cancer diagnosis. Occupational therapists or speech-language pathologists are the typical therapists who do this. It might be that working with those professionals can really help you use these strategies most effectively.

(42:44): As I said in the last few slides, these strategies often involve making lifestyle changes. This can be difficult and even distressing, but it's still important. If you find that's the case, working with a counselor who's particularly skilled at helping people with chronic medical conditions can be really helpful. Now we're to the question and answer part, and I hope we get some good questions. Thank you so much for your listening and attention.

Question and Answer Section

(43:13): [Susan Stewart]:  Thank you so much, Dr. Bergquist. That was a very thought-provoking presentation. We will now begin the question and answer session. If you have a question for Dr. Bergquist, please use the chat box on the left side of your screen to submit your question and we will try to get as many of those questions answered as possible.

(43:33): The first question refers back to your continued reference to a video that was produced last year with Dr. Parsons. People wanted to know where to find that. To find that video, you'll go to the BMT Infonet website, which is bmtinfonet.org. In the upper right portion of the screen, you'll see a tab that says ‘video library.’ If you click on that, underneath you'll see a menu of options on the right and you'll want to select the one that says ‘cognitive problems.’ The first video on the list that appears will be Dr. Parsons’ presentation. If anybody has any problem accessing that, just email help@bmtinfonet.org, and we can send you a direct link to it.

(44:23): Why don't we start with the first question. "After transplant, my husband often struggles to recall the word he wants to. Should I help him by supplying the word or will it help him more if he figures it out on his own?"

(44:38): [Dr. Thomas Bergquist]:   That's an excellent question. There's no right or wrong answer to this. I'm going to split the difference. Remember that slide we showed on cues. I'll use an example. Let’s say someone's from Boston, and your husband can't think of the name of the city they're from. If you're aware of what he's trying to say and he can't think of the word, you could give him the first letter of that word. Or another reminder like, ‘It's the city in Massachusetts.’ With a little cueing, he can come up with a word. Yes, you're helping him, but he's still able to come up with that word more or less on his own, as opposed to you telling him the word.

(45:29): If you want to help him remember your friend’s name is Sally, you could say, ‘Rhymes with Kelly.’  Or you could say, ‘The first letter of her name is S.’ It's good to talk about that ahead of time with your spouse, before you start doing that cueing cold turkey. You could say, ‘The next time you have trouble remembering that, sweetheart, is it okay if I cue you? Would that be a helpful strategy?’ If you get that agreement, then you can do that. You might need to continue to cue that person. But, sometimes, once you've done that cueing for a while, it can become more likely that they're able to recall it on their own. Even if it isn't, as opposed to being told the word or the name, cueing is a way that people can recall it more independently, rather than not being able to recall it at all.

(46:22): [Susan Stewart]:  All right, the next question. "I had an allogeneic transplant with total body irradiation 16 years ago. I noticed cognitive changes right away, but was able to compensate for a couple years. When my memory started getting bad enough that I went to a doctor, I was having trouble recalling my pets’ names, leaving burners on, etc. A couple years and a lot of testing later, I finally have an appointment for a neuropsychological evaluation tomorrow. What questions are important for me to ask the person doing my evaluation?"

(46:58):  [Dr. Thomas Bergquist]:  That's an excellent question. I'll first answer a question you didn't ask. Sometimes when we see people, we don't have all the details in their medical record. So make sure that the provider doing the neuropsychological evaluation knows that medical history from you. Tell the timeline of your memory difficulties, such as when they started and when they became worse or better, in relation to the medical treatments you've had. It’s really important to tell the provider all that information.

(47:38): Some of the questions to ask, which might be in a follow-up visit, are: What areas of cognitive functioning did you notice I had difficulty in? What areas were stronger? What areas were weaker? Do you think all this is due to my medical history, my bone marrow transplant treatment?

(48:29): You want to make sure that there's not another medical condition going on. I'm not saying that's the case, and I'm not trying to make anything scary. But I've seen it many times where you have this major medical event happen, but having cancer doesn't make you immune from having other conditions that could affect your cognitive functioning. You want to make sure that you don't neglect something else that could also be going on. I'm not implying that's the case at all, but there's such a thing as medical myopia, where you focus on the one thing you know is the case and you forget that other possibilities might be going on.

(49:10): The performance on the testing itself can inform, to some extent, what you might do if there are cognitive performance difficulties. I focused today on memory, but you could have memory problems for a variety of reasons. You can show up on neuropsychological testing as having true difficulty with memory. But many people complain about their memory, and then their memory testing looks fine. Does that mean you don't have memory problems? No, but you might have problems with attention or executive functioning.

(49:43): If you go back to that filing cabinet I showed earlier. In order to learn new information, you need to attend to it. You need to organize it. One gentleman I worked with years ago, when I showed him that same filing cabinet picture, he said, "You know, in my case, I think I have all these files there, but it's like they've been thrown all over the room and I don't know where they are. I think maybe I can remember this stuff, but I don't know where to look for it." So it's maybe more of an organizational problem, which is more of an executive functioning problem. You want to drill down into, ‘Okay, I think I'm having memory problems, but maybe there's something other than memory per se, that's contributing to those memory problems.’ I hope that answers at least the question you asked, and maybe a little more.

(50:32): [Susan Stewart]:  All right, we have a number of questions that are kind of a variation on this theme. This person's cognitive functioning is getting progressively worse. She's in her 40s and she's wondering, is this something that keeps getting worse or is it something that gets worse initially and then doesn't keep getting worse?

(50:54): [Dr. Thomas Bergquist]:   In general, if you have a change in cognitive functioning after a medical condition, you have that change and then the aging process occurs. As we get older, especially into our 60s, 70s, 80s, and to some extent in your 50s, that's when you start to see these cognitive changes with age. Say I had a bone marrow transplant and all the treatment that goes with it. Or I had a traumatic brain injury or a stroke. That can impact your cognitive functioning. We typically expect that to be stable over time. But as aging occurs, you're entering the aging process with a little bit of a disadvantage. Because you've already had some changes in cognitive functioning, the normal changes that happen with aging can have more of an impact.

(51:50): Here is a physical analogy.  Let’s say you had a medical condition in your 20s or 30s that caused some difficulty with balance, but you were able to get by.  As you get into your 50s, 60s, and 70s, where unfortunately changes with aging can further impact your balance, then you have more trouble with balance than we'd expect for your age. It’s a combination of that medical condition and just the process of aging. It also could be that, as you're getting in those older years, some other medical condition like a dementia could be going on. That happens with a certain percent of the population.

(52:35): It's good to get that checked out. The best way to answer that is just to get a thorough medical evaluation, possibly neuropsychological testing. Working with neurology, or even behavioral neurology -it is one of the best specialties to evaluate and answer this kind of question. Maybe they'll even do some brain imaging in some cases, but that can give you the best informed answer.

(53:12): [Susan Stewart]:  All right. A number of people have also asked, “If you get cognitive issues after transplant, does that increase your risk of getting dementia later?”

(53:24): [Dr. Thomas Bergquist]:  There's no literature I know that specifically says that, if you're talking about a degenerative dementia like Alzheimer's disease or other kinds of dementia. I know when it comes to stroke and traumatic brain injury, the general consensus – that’s a kind of controversial thing out there – is that those conditions don't increase your risk significantly for having dementia either. Now, there could be some studies that I'm not familiar with in the bone marrow transplant literature that at least suggest that, but as best I know, those conditions by themselves don't increase your risk for getting a degenerative dementia. A degenerative dementia is something that causes a more accelerated change in cognitive function, typically older in life, but it can start sometimes earlier in life. Alzheimer's disease is the one that people know the best, but there are other forms of dementia like Lewy body dementia, frontotemporal dementia and vascular dementia. To my knowledge, a transplant is not a major risk factor for dementia.

(54:33): [Susan Stewart]:  All right. This person wants to know whether fish oil supplement is good for brain health and if there are any foods that you should avoid.

(54:41): [Dr. Thomas Bergquist]:  That's a good question. To my knowledge, that's been studied fairly thoroughly. There aren't any particular supplements... I know there was some stuff done on fish oil. Vitamin E was another one that was studied heavily in the past. There could be some nutritional benefits to that, but I'm pretty sure there isn't a clear benefit for that in terms of enhancing cognitive functioning.

(55:05): There are a few thing that generally help with enhancing brain health, which can enhance cognitive function, or at least prevent further decline. One is managing the stress or emotional distress that you might have in your life. If you have a mental health condition, getting treatment for that. A lot of people have stress in their life. We can never really eliminate it, but we can manage it. Simple stress management strategies like relaxation breathing and mindfulness techniques can really help you feel better, but they can also help to keep your brain healthier.

(55:29): A good, well-balanced diet. From what I understand from the literature, the Mediterranean diet can be as good as anything. Just have a good, nutritionally balanced diet. Regular exercise is really good for brain health. Being social and interactive. Being with people where you have to think and come up with a conversation is like the mental equivalent of physical exercise.  Being at home and not being with people doesn't help you. While video games can have some benefit, it's much better for you to have a real conversation with a real person or group of people. Those are the major things that help with brain health and help stave off, as much as we can anyway, cognitive decline with age.

(56:44): [Susan Stewart]:  You got it. This is going to have to be our last question. Unfortunately, our time is getting short. “What is your opinion about over-the-counter memory supplements?”

(56:57): [Dr. Thomas Bergquist]:  Again, to my knowledge, there's not really much strong evidence that those make a huge impact. I know there are a lot of good sale pitches about those, but I work in an evidence-based world.  Believe me, if we had a lot of data that those would help people, particularly people with documented memory impairments, we'd be suggesting them all the time. The one thing that we do suggest, beyond the strategies I mentioned to you, and I've said it now multiple times, is regular, especially aerobic, exercise.  Walking is as good as anything we know. There's lots of evidence for that.

(57:30): If you don't have B-12 in your diet for an extended period of time, that can hurt your memory. So you want a good balanced diet, and not have certain things missing from your diet. But there's not compelling evidence that I know of that shows certain supplements are going to be the wonder cure to help you enhance your memory, unless it's supplementing for something you're missing in your diet already. Hopefully that answers that question.

(57:57): [Susan Stewart ]:  Great. It does. Thank you very much. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Bergquist for a very intriguing presentation. Very helpful presentation. And I also want to thank you, the audience, for your excellent questions. I do want to note that there were several people who did pass your little quiz at the end, so good sign for them. If you, the audience, have any questions, please contact BMT InfoNet if we can help you in any way.