Chemo Brain Update: Cancer-Related Cognitive Decline
Listen to the podcast to hear Erica explain:
why “cancer-related cognitive decline” is the most up-to-date term for chemo brain
the factors that can contribute to cognitive decline after a cancer diagnosis
some broad steps that people can take to help manage any thinking and memory problems they may be having
Erica Guardascione is a speech-language pathologist at the Kessler Institute for Rehabilitation in Saddle Brook, New Jersey. She’s also a curriculum developer and faculty member at ReVital Cancer Rehabilitation.
After completing her undergraduate degree in speech-language pathology at Hofstra University, Erica went on to pursue graduate studies at Nova Southeastern University. She has practiced for more than a decade as a clinical specialist in the Cognitive Rehabilitation Program at Kessler. The program is designed to help people with brain injuries rebuild cognitive skills, restore physical and emotional strength, and maximize independence. Erica is a clinical lead in the program.
Erica has a deep interest in cancer-related cognitive problems and is considered an authority on attention, focus, and memory impairments and rehabilitation strategies. As a faculty member at ReVital Cancer Rehabilitation, she recently co-led a continuing education course for therapists and other clinicians called “Cancer-Related Cognitive Decline.”
— Last updated on January 12, 2022, 7:28 PM
Jamie DePolo: Hello! Thanks for listening to our podcast. Our guest today is Erica Guardascione, a speech language pathologist at the Kessler Institute for Rehabilitation in Saddlebrook, New Jersey. She’s also a curriculum developer and faculty member at Revital Cancer Rehabilitation. After completing her undergraduate degree in speech language pathology at Hofstra University, Erica went on to pursue graduate studies at Northeastern University.
She’s practiced for more than a decade as a clinical specialist in the Cognitive Rehabilitation Program at Kessler. The program is designed to help people with brain injuries rebuild cognitive skills, restore physical and emotional strength, and maximize independence. Erica is a clinical lead in the program. She has a deep interest in cancer-related cognitive problems and is considered an authority on attention, focus, and memory impairments and rehabilitation strategies. As a faculty member at Revital Cancer Rehabilitation, she recently co-lead a continuing education course for therapists and other clinicians called Cancer-related Cognitive Decline.
Today, Erica joins us to talk about what we commonly call chemo brain, but is really thinking and memory problems caused by a number of factors. Erica, welcome to the podcast!
Erica Guardascione: Hi Jamie! Thanks for having me.
Jamie DePolo: So, as we have been talking and researching back and forth setting up the podcast, what is commonly called chemo brain, that’s really not a good name for it because there are a lot of factors that can contribute to it. So can you talk a little bit about those?
Erica Guardascione: Yeah, sure. So, chemo brain is really a term that’s been utilized in the past to describe cognitive changes — things like memory and attention and problem solving — that people might have after receiving chemotherapy. But through years of research what we now know is that these cognitive changes are actually more multifactorial and can be due to a number of reasons. So not only chemotherapy, but many other factors — things like radiation, hormone therapy, stress, cancer-related fatigue, medications such as steroids, and, potentially, inflammation caused by the cancer itself.
So due to this fact, research has begun to really utilize this term that Jamie mentioned, cancer-related cognitive decline. It’s a more encompassing term for all these multiple potential causations of cognitive changes. So now we’re seeing that it’s not just chemotherapy, it could be a number of factors related to cancer and its treatment.
The other thing about that term is that they’re using this term “decline” versus impairment. Also because in the past, breast cancer survivors were reporting these cognitive changes, but when going through testing, nothing was coming up as everything was falling in the average range. But what we now know is that this still a decline for most women who are used to falling into more high-average and superior intellect, and now they’re having more challenges and they’re falling in a more average range. So although it’s not necessarily an impairment, it’s still a decline in their typical cognition.
Jamie DePolo: Got it. And that probably makes people feel better who, say, were not treated with chemotherapy but still felt like they were having some issues, and they’re like, “But how can this happen? I didn’t have chemotherapy.” So that’s good to know. Now what are some of the symptoms or some of the things that somebody might be experiencing with this type of cognitive decline?
Erica Guardascione: Typically, what the individuals are reporting… I think multitasking is the thing that I hear the most. You know, “Before cancer I was able to answer emails while talking on the phone or updating my schedule while driving.” People were able to do multiple things at the same time, where now they say, “I feel like I can only do one thing at a time. If I’m in the middle of answering an email and my son is talking to me, I can’t divide my attention.” So that’s one huge thing.
Memory is another one. I’m forgetting things that I have to do later. I want to stop at the grocery store on the way home, then I realize I’m home, and I forgot to do it. So memory is another huge one.
And another big one is word finding. In conversation, when you’re trying to think of a word that you want to use and it’s almost on the tip of your tongue.
Those are the main ones that a lot of our patients are reporting. And again, as cancer treatments continue to get better and prevention and early diagnosis is improving, people are going back to work. People are going back to their lives. They’re returning to their role as spouse or returning to their role as parent while going back to work, and now they’re doing so with a change in their cognition, so this is really impacting people on multiple levels.
What I’m seeing, or what we’re seeing clinically, is definitely difficulty with word finding. Attention is a huge one, more so that when people are initially listening to information or participating in something, they’re impacted by their attention. And then something else called executive functioning, which is more related to higher-level decision making and problem solving.
This is actually being backed up in the research. What they’re finding is in some of these functional MRI scans, where they can measure brain activity, they’re seeing through the blood flow that there’s actually changes in these areas responsible for attention and executive functioning. So there’s definitely a legitimate issue that’s happening with these patients and their cognitive changes.
Jamie DePolo: Just to, maybe if you could explain a little bit more with the executive decision making. Is that something that happens more often if someone is at work, or is that something that we do all the time every day when we’re faced with a decision? If you could just give me a little bit more information on that.
Erica Guardascione: Yeah, absolutely. So what we call executive functioning is, it’s sort of the boss of our brain. It’s almost like an executive of a company. It’s always managing everything that’s happening in our brain and managing everything that’s happening in our lives. So yes, at higher levels we’re going to see it more when we’re at work and the demand is higher, but it’s happening every day. You know, while you’re cooking you have to make decisions. You have to monitor, “How am I doing on this? What are my next steps?” So that’s all executive functioning.
Organization plays a role in your executive functioning, so we talk to patients a lot about trying to reduce clutter on your desk because organization can be challenging afterwards. Prioritizing, so figuring out which tasks are more important to complete than others. That’s all part of your executive functioning.
Jamie DePolo: Oh, excellent. So it sounds like the movie “Inside Out” really was kind of was accurate! [laughs] Good to know, good to know.
So, more seriously, I know a lot of people on our Discussion Boards talk about experiencing a lot of these things, and they commonly call it chemo brain, which we know is not absolutely correct. But has there been any research looking at the number of people that experience this?
Erica Guardascione: Yes, so it’s constantly changing, but as of right now the research is saying that up to 30% of patients who’ve had cancer are reporting cognitive deficits before treatment’s even happening. So some of the speculation there might be it could be due to stress; again, some potential for that inflammation of the cancer itself.
Seventy-five percent report some kind of cognitive changes during treatment itself; so again, we have fatigue, stress, the nausea, the complications of the cancer itself, inflammation, chemotherapy, the financial stress of managing being out of work while managing and recovering from cancer. And then 35% of patients with cancer are reporting cognitive difficulties after treatment, so this could be anywhere from right after completing treatment up to 20 years later. They’re still reporting some type of cognitive change after the cancer and its treatment.
Jamie DePolo: Wow. Actually, I was curious about that. Is it something that ever goes away on its own? If you experience it, are you likely to continue to experience it, as you said, 10, 20 years after treatment?
Erica Guardascione: Again, there’s so many different potential risk factors. Every brain is different, so everyone is different. I think depending on the patient, yes, some of them, it does go away. Some work or develop strategies to work around it so it doesn’t become as much of an issue anymore. And you know, again, when we’re talking 20 years later, we’re talking about age coming into play and many other factors that might impact it. But there are things that you can do to help, for sure.
Jamie DePolo: Ok, good to know. And I guess all of this, too — I remember when I first started at Breastcancer.org and was writing about what was then called chemo brain, some women were saying, “Well my doctor told me it really doesn’t exist, it’s just in my imagination.” So what you’re saying is very validating because it is a real thing, it’s really there.
Erica Guardascione: Oh, absolutely. Absolutely, and that’s the first thing I tell patients, that this is real. Just them hearing that and validating the fact that yes, you are truly having cognitive changes, and no, it’s not something that’s in your head and no, it’s not just psychological, which I think is often what gets told to patients. So yeah, it is a legitimate issue, for sure.
Jamie DePolo: Ok, that’s very good to know. Now in your earlier answer you mentioned risk factors. Could you expand that and tell us what are some of these risk factors for having cognitive decline after a cancer diagnosis?
Erica Guardascione: Some potential risk factors that you can modify and maybe work to help at least mitigate some of the effects, so things like making lifestyle changes: avoiding smoking, regular exercise and physical activity, maintaining a health diet, a health sleep routing is also really important, and managing stress, for sure. One of the good things about the program that I’m lucky to work for, ReVital, is that the therapists are highly trained in working with patients, and they help them to develop exercise and physical activity reintegration and adoption programs to help lower the effects of the cancer treatment even before it starts. So this might help mitigate some of the potential risk factors for these cognitive issues.
Another thing that research is analyzing is this concept of cognitive reserve. So our cognitive reserve is really our developed cognitive capacity, and this is influenced by things like our genetics, education, our occupation, and also our exposure to cognitively stimulating activities. I’m often telling patients it’s important to include cognitively stimulating activities in your daily life.
So this can really be anything. I think sometimes our patients are feeling like we have to be doing computer-based programs or we have to be doing specific cognitive exercises, but there are so many things that are really cognitive based. So anything that involves new learning. So if it’s something you love and it involves new learning, do it. It can be traveling. It can be learning a new recipe, learning a new language, learning how to play a song on the guitar, any kind of new learning. If you love reading, reading is great. Anytime you can have your brain have that opportunity for new and stimulating activities, it can help increase your cognitive reserve, which we’re finding, in turn, may potentially help reduce this risk of developing cognitive impairment.
Jamie DePolo: Interesting. So when you say cognitive reserve, it’s almost like — if this is a good analogy, you can tell me — you’ve got this base kind of in there that you can draw on when you start maybe having some problems.
Erica Guardascione: Exactly right, exactly right. Yeah.
Jamie DePolo: Ok, and I’m curious, since it sounds like so many factors can affect this cognitive decline — do you find that it’s not a one-size-fits-all sort of treatment? Do you have to try things out and see if they work, and then if they don’t, try something else? Or are there really some tried-and-true things that work for everybody?
Erica Guardascione: Oh no, absolutely. I say all the time, there’s no cookie-cutter way to target cognition. It’s just… there’s no possible way because every brain is different, all of these potential factors are different, so what could be causing it could be different for everybody. So no, not everyone is going to have the same issues. Some might have more word finding, some might have more difficulty with attention. And how it impacts them in their daily life is different, so no, there’s no cookie-cutter way to really address it.
So working with a specialist is very important because 1) they’re going to help you identify where you’re having difficulty, but they’re also going to help you figure out 1) how can I work on these difficulties, and 2) what can I do to work around them? So if I’m having trouble with memory, what kind of systems can I develop? You know, am I someone who can start using alarms on my phone? Am I someone who needs to use maybe planners or calendars? There’s so many different resources, and depending on your job or your life, your therapy is going to be different and what you need is going to be different to address these challenges.
Jamie DePolo: Ok. So [is] there anything sort of generally, that people can do? I have read some studies showing that exercise can help. I think I read something else suggesting that maybe acupuncture could offer a little bit of help. Are there sort of broad things that you recommend that people do, or otherwise, are there some specific treatments that you’d like to talk about?
Erica Guardascione: Yeah, so I think we kind of touched upon this already, but I think the first and foremost fact is that people need to know this is real. There are things you can do to help, and this is something that is a legitimate problem. So I think identifying and making that ok is very important and something you need to think about.
But yes, there are plenty of things that the research is showing can help. Exercise is huge. So what we know about exercise and physical activity is it can reduce that inflammation, which can increase the risk of cognitive issues. So exercise and physical activity is huge.
Sleep management has also shown to really help cognitive issues, so trying to create an optimal bedtime routine for yourself, going to bed at the same time, limiting screen time can mean a huge correlation between improving cognition.
Stress — I think it makes sense — stress and psychological adjustment plays an integral role in your recovery and has a direct correlation to cognitive impairment. So figuring out ways to manage stress is very important. You mentioned acupuncture. That is one in the research that can help reduce stress, which then in turn can help reduce that potential for cognitive impairment or how much it impacts cognitive impairment. Things like music therapy. Mindfulness, which I know that you’ve done podcasts previously on mindfulness. Some ideas of muscle relaxation techniques, which is this idea of tensing specific muscles and releasing them to help reduce stress. Yoga. Also, support groups and psychological counseling as needed.
So those are the more general ideas, things that you can do on your own. But specifically, in cognitive rehabilitation, which I do suggest for patients who feel like they’re having difficulty with cognition, the first thing we’re doing is we’re assessing. We’re performing a comprehensive assessment. We’re figuring out exactly where you’re having difficulty. We’re figuring out how that’s impacting you in your everyday life. And then we’re going to target it two-fold.
So 1) we’re going to work on what we call remediation. We’re going to work to help the brain improve that issue, so we’re going to help the brain understand there’s a problem there and try to target what we call neuroplasticity. So we’re going to help the brain to just impair some of the damage or work around some of that damage. And then the second part is we’re going to be working on these compensatory strategies, so ways that we can work around it.
Again, everybody is different. I’ve worked with teachers. I’ve worked with doctors. I’ve worked with mothers. So not every strategy is going to be the same for everybody, so figuring out what strategy is going to work to help them continue to do all the things that they want to do in their life, maybe not exactly the same way, but using strategies that they can still do the same things they want to do. So cognitive rehab has definitely proven within research — and I’ve seen it firsthand — that it can really make a difference.
Jamie DePolo: Excellent, excellent. So good to know. Even if people feel like they still have some issues, it sounds like there are tools that then, as you said, they can continue to do what they did but just maybe with some help.
Erica Guardascione: Exactly right.
Jamie DePolo: So I have to ask, too, because we do hear from folks on our Discussion Boards who may live in very, very rural settings or very far away from big clinics, don’t have access to a therapist like you. Do you know of any sort of online or I’m thinking remote access to therapists like that, or do people really have to travel?
Erica Guardascione: That’s a wonderful question. I know there are. I don’t know within our program, if that exists. That is something that we are hopefully working towards happening. In the meantime, the computer-based programs have been shown to make improvement. So is it ideal to work with a therapist along with a computer program? Yes, but things like Lumosity, BrainHQ, these are just some of the computer activities that are available online that you can do to get more information and target some of these areas that you’re having difficulty with.
Jamie DePolo: Ok, well that’s good to know, that there are things that people can do completely on their own.
Erica Guardascione: Absolutely.
Jamie DePolo: Ok, so now, sort of to wrap up, if somebody thinks they’re having cognitive issues, are there a series of steps that you recommend? Are there sort of… can they test themselves to figure out, “Is this happening to me? Am I slipping?” And then to go forward, what would you suggest they do?
Erica Guardascione: So obviously first, starting with your doctor — and you can hear through this podcast that it is becoming more and more prevalent in the research and through medical professionals that they are learning more about this — so I do feel like oncologists and doctors are very much more aware of the fact that this is a legitimate issue. So I think starting with your doctor is first and foremost. Talking to your doctor about the potential for maybe participating in physical therapy to work on an exercise program, or cognitive therapy, or speech therapy.
I know sometimes it’s hard to find a specific cognitive therapist throughout the country, but speech therapists and occupational therapists are all trained in cognition, and it’s important if you can and it’s available near you to find a therapist who is highly trained in cancer rehabilitation, would be my first suggestion.
The ReVital program is nationwide. It’s run through Select Medical, so that’s definitely a great resource if you are anywhere near a Select Medical facility. That would be my first recommendation. But most speech therapists and occupational therapists have a great background in cognitive therapy and can also help with this as well.
Jamie DePolo: So if they find a therapist or if they talk to their doctor, is it optimal for them to start doing some stuff on their own, you know, maybe if they have to wait to get an appointment, or is it really better just to see what the therapist says?
Erica Guardascione: I would start with the doctor first and see what their recommendations [are], because again, everybody is different, so every doctor is going to have different recommendations. But yes, starting with the doctor first. You can always call and ask questions. I’m happy to answer any questions that anybody might have and point them in the right direction in their area or even help maybe find someone in their area. That’s something I’m very happy to do. So I think that’s probably the first place to start is with your doctor, and then again, I’m happy to answer any questions for any patient who has them.
Jamie DePolo: Excellent. Erica, thank you so much. This has been really helpful and pretty validating for a lot of people who are dealing with this issue.
Erica Guardascione: Awesome. Thank you so much for having me. I love having this opportunity to talk about this. It’s something that I feel very passionate about, and I do feel like it is definitely underserved, and a lot of women and men are not getting the treatment they need. So I’m happy to help educate.