Neuropsychological Issues Related to Brain Tumors

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good morning everyone I'd like to introduce myself my name is dr. Kathleen Fuchs and I am a clinical neuropsychologist at the University of Virginia in the Department of Neurology and we're going to talk a bit today about neuropsychological issues and how they relate to brain tumors and my hope is that through this webcast you'll get a better understanding of how brain tumors affects people's cognitive and emotional functioning and maybe a few things a few guidelines of what you can do with that so first off I'd like to say that I have no conflicts of interest to disclose that have to do with the content of what we're going to talk about today so this is sort of our plan for our time together and the first thing I'm going to cover is some basics about brain functioning and how tumors interface with those then we're going to have a little brief course in neuropsychology I'd like to talk about what neuro psychology is about and how it can be useful for folks with brain tumors and as part of that I'm going to talk about what our test scores tell us and what those might mean in terms of real-world functioning further I'm going to go on to talk about how cognitive changes can impact self-image and a person's ability to regulate their own behaviors and then further how this can impact relationships and roles within families and communities and then I'll say a few things about how we can support people in moving forward so it's a pretty ambitious agenda stick with me so the first thing I'm going to talk about a bit is geography of the brain so we all know that the brain is divided into two hemispheres are left in the right hemisphere and that's important because the hemispheres while they work together have specialized tasks and I think a lot of us have heard about in the popular press people being more right-brained or left-brained and what that's referring to is the left hemisphere is more specialized to manage language functioning whereas the right hemisphere it's more specialized to manage a visual spatial functioning or making sense of the visual world out there and what that all means so one example of that is the left hemisphere as I mentioned its dominant for language the its dominant for language so it decodes the content of language whereas the right hemisphere maybe more decodes what is the tone of language or the emotional overlay of what people have to say and so on they're also within each hemisphere there are areas that are specialized for different functionings so one thing we think about is more forward areas of the left hemisphere are more specialized for speech expression whereas the most more posterior areas are more specialized for understanding so comprehension Orcs or reception of language there are also several abilities that seem to be distributed throughout the brain and rely on intact connectivity so things such as attention and processing speed don't truly localize to one area of the brain but really are dependent on the areas of the brain talking together in an efficient manner so that's a basic crash course and to sort of illustrate that I've got a picture of the brain here and I will say it's not true that these brain parts are colored this way but just to highlight the areas I'm going to be talking about so we have the frontal lobes surprisingly in the front of the brain up at the top and toward the back of the parietal lobes along the sides of the brains are the temporal lobes and in the back is the occipital lobe and each of these lobes like I mentioned earlier has different abilities that seem to be controlled or more managed by those brain areas so you can imagine that a tumor in one area might give you very different cognitive deficits than a tumor in another area and I'll touch on that in just a moment again so some other things about the brain that are important in terms of how a brain tumor impacts the cognitive functioning is that we think of the brain as being in a box so the skull represents the box and the brain can't really expand beyond that box when a tumor starts to grow it's what we call a space occupying lesion it's taking up room and since the brain can't expand past that skull other areas of the brain get compressed when a tumor starts to grow to the extent that it may be if the tumor gets large enough it starts to push the brain down into what we call the foramen magnum up where the the skull and the spinal cord connect and that's a really dangerous situation when that happens so one of the first signs often that somebody has a seizure or excuse me a tumor is that they get significant headaches because there's that swelling in the brain another thing that can happen in with tumors is that they can trigger seizures in the brain and that's a common first presentation of someone with a brain tumor is that the tissue of the brain is irritated and the brain works on kind of electrical chemical signaling when that gets disrupted parts of the brain different neurons can misfire and cause someone to have a seizure another important characteristic of the brain is that it can in a sense rewire itself or we call this plasticity so once a connection might be lost between different areas of the brain due to a tumor or surgery to remove the tumor it is possible over time for other areas of the brain to develop connections that can help restore to some extent that function that might have been lost when that direct connection was cut and it used to be thought that plasticity was mostly a function of younger brains but we've discovered that people have plasticity in their brains throughout their life and if you think about it that allows us to learn new information as we age another issue with the brain is that there can be a loss of function with a tumor or a resection and sometimes that loss of function can be permanent but more often because of class's plasticity some function can return even if it might not fully return to baseline level all right the other thing we have to think about when we are considering how brain tumors interact with cognitive functioning is the characteristics of the tumors themselves so some tumors are what we call encapsulated that it's you can think of it it's just like a ball in there well those as you can imagine are much easier for a surgeon to go in and remove because they can get most of that tumor out but others have more infiltrating characteristics or they spread like fingers into the brain tissue those are going to be much harder to get out completely with surgery and those also can impact a lot of different areas other than where the initial tumor is the other thing about an encapsulated tumor is it might put pressure on that one area where it's growing where as I mentioned the infiltrating ones can hit several different areas also growth rate of a tumor is important some grow very very slowly over time to the extent that when they're discovered the option might be to not do surgery because they are so slow growing and aren't greatly disruptive to brain functioning other tumors grow very rapidly and cause significant changes in cognitive functioning quite quickly obviously the size of a tumor is important as to how much space is taking up and what it's impacting in terms of its neighbors and also when it gets receptive how much other tissue needs to be taken out to confirm that the whole tumor has been removed there are different tumor types and again it's beyond our time together to talk about some are much more aggressive in malignant or they have more of what we call potential for misbehavior whereas others are just relatively benign relatively in that they are slower growing and don't invade the surrounding tissue but one of the most important things we need to think about overall in terms of tumor characteristics is just like real estate it's all about location location location so where that tumor is is going to strongly determine the kind of cognitive problems a person might have additionally as I've mentioned a couple times there are other things that can impact cognition including surgeries so where the surgery takes place how much tissue had to be removed along with the tumor were there any complications in terms of healing or infection following surgery that could impact somebody's abilities oftentimes people also receive radiation to treat their tumor some get very focused radiation again that might impact the tumor and just very limited surrounding areas whereas other individual especially especially if they have metastatic tumor several places in the brain might undergo whole brain radiation which over time can have more deleterious effects on cognitive functioning and then of course there's chemotherapy and a lot of people will say that they experienced what they would call a brain fog or a chemo fog once they're having chemotherapy and even maybe for a while thereafter that's a really hard thing for us to sort of identify and treat but certainly it's a very consistent thing that I hear from people and a lot of times the further out from treatment they are the more they feel that they are back to their baseline after that treatment now in all of this we also have to consider who it is that has a brain tumor so certainly age is a factor it used to be thought that brain tumors were relatively benign in terms of long term cognitive functioning in children because children have so much innate plasticity in their brains and a lot of ability to recover function or in other words rewire but that's not exactly true as depending on the age of the child when they have the tumor when they have surgery or if they have a lot of seizures associate that with that may affect their normal developmental stages such that later on in life they may have more cognitive issues because they didn't have a normal developing brain like some of their peers did certainly in terms of adults younger healthier adults can tolerate surgery and treatment usually much better than older adults so age is a factor also there's this issue called cognitive reserve and that's something that we refer to in terms of somebody's not only their baseline brain so how good of a brain did you have at the start of life but also how well did you use that brain were you well-educated did you engage in a lot of cognitively stimulating activities in life did you have the kind of career that helped you develop your brain further the reason that's important is that it's thought that individuals with more cognitive reserve can withstand more brain pathology with less impact than somebody without as much cognitive reserve another thing about cognitive reserve is that folks with a lot of that typically are pretty good at compensating or thinking of other ways to do a task such that if they do have some deficits following a brain tumor or surgery they are very active in thinking about well how can I do that tasks in a different way and capitalize on my abilities that are still intact another important issue is coping styles some people are very resilient to what life deals them and other people have more difficulty with that especially if they've sustained a lot of traumas over the course of their life they may feel a bit depleted by the time they get a brain tumor diagnosis it also has to do with the kind of support that they have around them and whether or not they feel they can kind of rally their resources and deal with their treatment very well and get back to a level of quality of life that they can enjoy certainly other health issues come into play some people come into this kind of diagnosis with a lot of other health problems such as cardiac problems or maybe other physical issues that impact their ability to cope and sort of absorb this additional health problem another issue is we look at what are the demands that a person has on them in terms of work and their social roles so does somebody have a lot of things going on in their life in terms of the type of work that they do are they in a management or high-level responsibilities job do they have the kind of job that they just go and do it and they can walk away from it at the end of the day and not have it weigh on them or stress them out during their free time our is somebody say a homemaker who has many children to keep track of and to get to different places so everybody has their own different set of personal characteristics that they bring in with them and one of the jobs is a neuropsychologist is to figure out who that person is and what kind of things do they need their brain to do so going on we're going to talk a little bit about neuro psychology itself and a lot of people don't quite know what neuro psychology is there maybe have never heard of it but it is basically the study of the brain how it functions and then how it creates different behaviors and behavior is like things like memory and attention those are behaviors that we rely on our brain to take care of for us also how we think of behavior how a person can function in their day-to-day lives is I just alluded to a moment ago now a neuropsychologist when they look at somebody's cognitive test results which I'll explain in a minute they're not only looking at somebody's general abilities or what a lot of us think of is like an IQ but also very specific functions as I mentioned a moment ago like memory or attention and the way we get at that is we use what are called standardized tests and a standardized test is one that is given the same way every time whether you're getting tested in New York or Los Angeles such that neuropsychologist can look at another neuropsychologist report and fully understand how that for of how that patient performed standardized tests are given like I said the same way every time and they also come with them a group of what we call normative data so we know how somebody with a certain age a certain educational level should perform on a given test we get the full range of what would be a normal performance what would be a very excellent performance as opposed to what would be an impaired performance for that person's age when we do have cognitive assessments we don't just test though those cognitive abilities we also include emotional functioning because we know that things like depression or anxiety can not only impact how well somebody performs cognitively but also how well they do in their day to day lives and it's important because things like depression and anxiety are very treatable conditions and many people might not fully recognize that that's impacting them so a neuropsychologist does several things a neuropsychologist can assess people with cognitive tests can actually provide some treatment in terms of rehabilitation or developing compensatory strategies and a lot of neuropsychologists are involved in research to look at how treatments impacts cognitive functioning how the brain works in different areas and so on so I like to tell people it's a bit of art along with a whole lot of science now there's a lot of misconceptions about neuropsychological assessment and one common misconception is that it takes all day and it's exhausting now there are some individuals who do like to give test after test after test such that it might be a full day of testing but most of us try to pare down the number of tests we give so that we can really get at what a person's strengths and weaknesses are without exhausting them it's also possible for us to break up an assessment and have it take place over a couple of different days if fatigue isn't a factor for a difficult in dividual we can also tailor our assessments to an individual's needs if we know that somebody is not having a problem in certain areas we might not necessarily have to test those areas and can just focus in on where we think or where we don't quite understand how a person is functioning to get at a better understanding of why they're having problems in their day to day lives insurance does cover neuropsychological assessment Medicare and Medicaid also cover it for some individuals who are on or underinsured but are applying for disability in some circumstances the Social Security Administration will cover the cost of an assessment as I mentioned before assessments can be very brief or screening and this is particularly true if we're tracking somebody over time and wanting to see if a particular treatment is beneficial for them and I would say over all neuropsychological assessment can be very very helpful not only just to the patient to help him or her better understand his own abilities but also to family members who can get a better understanding a lot of times family members come in and they don't quite understand why the person is having the problems they're having and they think the person their patient or loved one is being obstinate or not trying hard enough or something like this so when we sit down and talk about the test results it can be very revealing to them and help them better understand how they can support their loved one neuropsychological assessment again can also be very helpful to the treatment team to make them aware of things that they might not have captured in their clinical interactions for example sometimes they may not appreciate that somebody has significant memory deficits and might need to have instructions written down or might need to have somebody with them in order to cue them later about certain treatment decisions and so on now a lot of times doctors will do some brief cognitive assessments will call them bedside testing in which they do just a simple few questions asking the person if they know the date and the day and they might ask them to remember three words and so on and those are very blunt ways to assess somebody's cognitive functioning it's useful but it doesn't give us a lot of fine-grained detailed information also those assessments are very brief and don't really capture other factors that might impact somebody's abilities such as fatigue like I mentioned before a lot of times people get those bedside tests over and over again and they can pretty much walk into their doctor's office and just start reciting the day in the day and the three words they know their doctor is going to ask them to remember so that's not going to capture a very subtle change in somebody's cognitive abilities nor can those brief testings part parse out different abilities and now let's all explain in a minute one of the important things we look at is in memory functioning where is memory breaking down and that can't really be done bedside the other thing we can do that can't be done in brief screening is identify patterns that are consistent with very disease processes and we also can better capture change over time or with treatment because we can use more fine-grain and sensitive tests now one of the main things that we're trying to answer with a neuropsychological assessment is is this person's performance normal do we think this is a change from that person's baseline and as I explained one of the ways we can do that is by doing what we called a normative comparison we used our standardized tests and compare a person's performance with individuals of their same age in their same educational level then we look at somebody's individual pattern of performances and say is this a change from that person's baseline and are there deficits or preserved abilities that tell us something about how their brain is working so we're looking at a lot of things simultaneously and I'm going to talk a little bit about sort of this change from normal so this is some made up data here that I have and if we think of this is the average height of an American woman so this is the normal bell curve and we know that the midpoint of the bell curve would be what would be dead average in this case for example for a woman's height so I just set dead average as five feet five inches and then the range of what would be average is 68 percent of the population of American women should fall between those two marks I have up there between being five foot tall and five foot 10 inches tall so most women fall within that average range over to the right you have women above 5 feet 10 for example most of the WNBA they're all over there then on the other side the left would be the women less than 5 feet tall and here's where you have our gymnasts and other women who are of tiny stature not to say they're abnormal but they don't fall in that normal range but the further out you go on either end of this graph the more atypical you are now that's important for us to know when we look at performance on tests but this also highlights a very important thing and that is sometimes people come in they do our tests and a neuropsychologist could say to them well congratulations your average you're right there at five feet tall and the person may look at the neuropsychologist and say but wait a minute how can that be average I used to be five foot ten so my clothes don't fit anymore this is a dramatic change for me so it's neuropsychologist we have to appreciate that even though somebody may still fall in the average range that might be a big change for that person and that's why it's important for us to get a really good sense of somebody's baseline abilities to know is this a big change for them or not now excuse me when we do a neuropsychological evaluation it looks something like this picture here you have one person usually a neuropsychologist or a trained technician who is administering the test and then a person sitting across the table from them who is doing the various paper-and-pencil kinds of tasks that we're giving them so we're gonna assess many different domains of cognitive functioning and these include attention and concentration memory language abilities visual spatial skills executive functioning speed of processing and emotional functioning and I'll talk about each of these in some detail first off as I've mentioned before we really want to get a sense of somebody's baseline abilities and we can do that several different ways we can just look at their level of education that might tell us kind of how they've always functioned and what degree of cognitive reserve they might have but excuse me it's also true that a lot of individuals with a lower level of education are actually quite bright and had to leave school early for a number of reasons and you think about some of the richest technology moguls in our country today a lot of them never finished college and we would consider them to be pretty bright individuals so educational level can tell us something but not everything so oftentimes we try to fold that in also with what with somebody's career attainment what kind of level of job did they have and as I mentioned earlier level of responsibility so that gives us maybe a good idea of somebody's baseline we can also look at their turn test performance and we see what was their best performance across the different tests that we gave them that might represent their by baseline level further we have certain tests that we call hold tests so they hold their value even in the face of changes in brain functioning or another way we think of those things are what we call crystallized knowledge things that you know and have known for a very long time and they're so well ingrained in your knowledge base that they don't change with disease and normal aging and other processes like that so one way we can estimate somebody's baseline is we can give them a simple reading recognition task and so here I've got some words and you'll probably notice that these words don't follow normal English pronunciation rules so if you didn't know what that word was you wouldn't know how to say that on-site so for exemple yot who would know that that's how that's pronounced unless you'd already heard it and seen the word together and probably you had to have that happen earlier in life so that that connection became very well cemented in your brain so yacht kernel and Yui and synecdoche we're not asking people to define the words just can they say them and that level of language fluency correlates with baseline functioning and it's very resistant to decline with age like I said or specific disease processes so that gives us a good estimate of somebody's baseline from there we go on and test different abilities and contrast that with where we think the person should fall and I should say even if we think somebody's baseline functioning is in the average range we wouldn't necessarily expect everything that they do to fall in the average range because we all have our strengths and weaknesses some abilities are a little bit better than others there are some things that people come in and they say you know I've really never been good at that and sure enough that comes up on our testing but yet we see a lot of other things that they are good at so one thing we want to look at right away in a neuropsychological evaluation is what is somebody's attentional functioning like and attention is not only the ability to focus on something but sustain that focus over time and perhaps even manipulate the things that they're focusing on you can imagine if it's hard for you to pay attention to something it's going to be very hard for you to get it into your head and then later remember it later on so we think of attention as the cornerstone of learning and memory and attention is very fragile usually if you think about it when people have the flu or they don't feel well they really have a tough time focusing and paying attention to that when somebody gets a little concussion or something like that one of the ways they notice that is they have a tough time focusing their attention for a little while until they recover from that so it's very very fragile the way we assess attention is several different ways one way we look at it is what is the person's span of attention or what is their attentional capacity and we do that with simple tests where we might read off a series of numbers and ask the person to repeat the numbers back to us and the number of numbers a person can repeat back we think of that as the size of their attention span and some people have very large spans and some people have very short spans we'll do an analogous test where we give them a way to show us how much visual information they can hold on to over time usually we do that by tapping different blocks in a certain order and asking them to do that same sequence so we get that visual span another way we can test attention span is to put them in front of a computer and see with they can detect certain targets that might pop up in different areas of the computer screen so we'll have them maybe hit a button to show that they've detected that target we might have them do that task over time to look at sustained attention and we might add some more complicating factors such that we say well respond to this kind of target but not that kind of target so now we're looking at more of what we call divided attention or you have to do a lot more processing than simply look for one type of target or we might ask people to shift their attention from one kind of task to another very rapidly and that really can have implications for somebody's ability to work and arrive because you can imagine if you can't shift your attention between looking down the road looking to the side of the road monitoring your speed and all of that you're going to have a tough time driving safely another area that we're going to look at is what we call concentration and working memory and that's your ability to hold on to a piece of information and manipulate it in your head and we might get at that by asking people to do sequencing types of tasks so for example instead of repeating numbers back to us in the order that we just said them we'll say ok we're going to say some numbers now you repeat them in the reverse order so you have to turn that information around in your head and give an answer that is different than the way you took the answer in we might ask somebody to do kind of complex sort of different sequencing tasks alternating sequences between numbers and letters to see if they can keep their place in each sequence as they go along another way to look at concentration or working memory is to have people to do arithmetic in their head or do serial addition or subtraction to keep a series going now the big area that we look at is memory and I will say across different disorders different disease processes even with normal and not so normal aging memory is the number one area of complaint that people come in with and we joke we call this the common cold of neuropsychology everybody says they've got a problem with their memory and our job is to figure out well where is their memory breaking down because oftentimes what people experience as a memory problem is really a challenge with attention remember I said that if your attention span is small it's hard for you to get large pieces of information in your head or you may need to go over something again and again before it can be remembered so it's important for us to know the attention span in order to us to better understand how memory is working and memory is very complex when somebody comes to me and says oh my memory is terrible well then I have to break that down are you talking about your memory for recent events or are you talking about your memory for past events so within the past few weeks or the past few years when people talk about short memory they're usually talking about the past few weeks and as I'll show you a minute I think of short-term memory as a moment-to-moment the other thing we're going to look at is if somebody is complaining about memory problems are they having trouble accessing information they know and learned long ago and we call that your semantic memory and semantic memory is kind of the memory that we all have in common for example most of us all know who the first president of the United States was because we learned that in school a long time ago so that's our shared semantic knowledge and that contrasts with episodic memory which is your own personal experience so what did you personally do in the last few weeks what is your memory of say your wedding day or when you graduated from high school or another personal event it's gonna be very different for every single person and some people have a breakdown in one area but not the other another important memory aspect that we want to assess that impacts a lot of people is what we call their prospective memory or we term that remembering to remember and a common thing we hear from people is they say oh I forget about appointments well they know they have an appointment and they might have even marked it on the calendar but they may have forgotten to look at their calendar or they may have forgotten that later in the day they have to get ready and go to that appointment so it's sort of your ability to remember what you want to do in the future and that can get people into trouble in terms of doing things like paying bills if they forget that this is something they have to do later on in the day or later on in the week now memory is made up of different systems and my original slide had these boxes all connecting up and I can see a faint line of them connecting up in there but the very first part of the memory system is the sensory register so that's your eyes your ears your hands it's how we take in information from the environment into our brain and then the brain starts to make sense of that from the sensory register information moves into what we call your short memory and I said a minute ago I think of that as memory that's gonna last for just a few minutes or another way to think of short-term memory it's when somebody gives you a phone number and you have to walk across the room to pick up your phone and dial it well at least that's how it used to work now everybody just pulls their cell phone out of their pocket and they don't really need to memorize the number for very long if at all because the memory the number is probably already stored in the phone but that's an example of short-term memory holding on to something over a very short period of time if you don't repeat that number over and over again chances are you're not going to remember it later because you use it or you lose it another kind of parallel process with short-term memory is that working memory holding on to an information piece while you're processing it like doing a math problem in your head from that short-term memory if this is a piece of information that you want to hold on to it kind of goes into what we call your long-term memory and your long-term memory is all the events that have happened to you the facts that you know also the skills that you have like how you write a bike and so on it takes effort usually to get things into long-term memory so if there is a problem in the short-term memory in the little day-to-day things people are going to then have difficulty later on retrieving the information so that brings me to how learning is a memory is a process there is the learning process which we call encoding there's the retention process which we call consolidation and then there is the retrieval process which is recall now when we assess memory we want to kind of tease apart those different processes to see where somebody's memory might be breaking down and we also want to look at different types of memories so we're going to look at verbal memory as well as nonverbal memory and this is important because the verbal memory has to do with language and that might be affected more by pathology in the left hemisphere of the brain whereas non verbal or visual memory might be more affected by pathology or tumor in the right side of the brain we're also going to look at the task demands for memory so some things we give people to do are very full for example we might ask someone to learn a list of words a list of unrelated words in fact and that's going to be hard because most of us don't sit around and try to learn lists of words all day what we do instead is we take in information in context so we might have a conversation with somebody or listen to a report on the news or read a book and therefore we get information that's a lot more rich and is connected in with other pieces of information that is usually much easier for people to learn and hold on to than the essay a list of words so those are two different kinds of task demands there's also what we call incidental learning so we might have people do a task and they don't really appreciate that they're learning how to do the task or learning some of the stimuli associated with that task until we test their memory later so it's sort of what does your brain passively learn while you think you're doing something else and then we also assess memory by seeing what somebody can freely recall for example we might say hey we're at a list of words to you earlier what were those words so that would be your ability to recall versus recognition where we say I read some words to you previously tell me yes or no was this one of the words on the list most people do far better with recognition than they can with free recall because the recognition cues sort of help them out and ping that part of their memory that says oh yes that's right that word is familiar you did tell me that versus no I don't think that was one of the words that you told me so those are all the different ways we can look at memory because we want to see how memory is going to fail so for example memory might fail at the learning phase because of decreased attention like I mentioned if a person is distracted stress it's very hard for them to take in information and therefore they might not recall it later on because they didn't really learn it to begin with also a busy lifestyle can impact learning I used to call this soccer mom dementia so you see women in the minivans driving around dropping kids off at different places picking them up and they might leave a kid somewhere on a playing field because they've forgotten that that's drop them off so that you know that poor mom wasn't neglecting her kids she just had a lot of things to keep in her memory store at that point in time this is also true for dads by the way it doesn't just affect moms it could also be that sensory loss impacts learning so for example if somebody has visual or hearing impairments they're not getting all the information into that sensory store and therefore it's not getting into the brain and then finally depression and anxiety can impact learning it can make somebody sort of working at part battery power so they're not putting the effort into learning or they may be so anxious and distracted it's hard to learn retention can get impacted there are certain disease processes that specifically hit target areas of the brain that are important for retention and a classic here is Alzheimer's disease where there is pathology and a deep part of the brain called the hippocampus that impacts a person's ability to hold on to information they've just learned another thing that income that can impact retention is when information is not learned very well and it's not connected in very well to what a person already knows and I started refer to this as having a messy closet so if you think a minute about the hall closet in your house the one where you're throwing coats and shoes and sports equipment and presents that you want to hide until next year and so on and so forth some of us don't have very clean closets and as a result you open the closet and in fact you try to close the closet door as fast as you can because stuff starts to come tumbling out and then it's very hard to find information in that closet whereas other people have very organized closets they have little bins that are clearly labeled they put things away in the pride place every time and therefore it is easier for them to go into that closet and find something well that's kind of a good model for how our memory works a lot of us have linked memory and different information to different things already in the brain whereas others don't and it's going to be hard for them to go back and get that information out which brings me to retrieval so people have trouble retrieving information if they didn't learn it very well if they throw it and they're a very messy closet or they're not using cues to help themselves so sometimes people for example complain that they have trouble learning people's names but they do well recalling them if they use a cue like they associated a person's name with a physical feature about the person or they'll start doing things like going through the alphabet to seeing if coming up with a letter might cue them is to the letter of the first letter of that person's name but just like learning depression and anxiety can impact retrieval again people often think they don't know information so they don't try very hard to retrieve it and that would be poor effort and a lot of times we'll see that people recognize information pretty well even if they couldn't read retrieve it on their own and a lot of time again it's that expectation that they can't remember so they don't really think and try very hard to remember and I don't want to be pejorative and say that people aren't trying but when people are depressed again they just sort of our operating on low battery power and it's hard for them to put the cognitive effort out there to do difficult things okay I also talked about language and we know that kind of resides mostly in the left hemisphere of the brain and language involves speech it involves reading and it also involves writing we talk about expressive language so again speaking we talk about comprehension or understanding what is said understanding what you're writing and there's different ways we can assess that we can test somebody's vocabulary knowledge we can show them pictures of items to see if they can retrieve from their knowledge base the label that goes with that picture we also give them unusual language demands and we say things like here's a letter of the alphabet tell me as many words as you can think of that start with that letter and that's unusual language tasks because we're asking a person to search their knowledge base in a way that they're not used to searching in or we could give them a task that is more familiar like say okay tell me all the animals you can think of so now we're giving them a category to draw from to see how quickly they can retrieve information from their knowledge base we might also give somebody a series of increasingly complex commands to see can they comprehend what we're asking them to do another area that we're going to look at and this is more right hemisphere it is what we call visual perception and visual construction so a person's ability to correctly perceive stimuli and then construct an internal representation of that so for example we might give somebody a piece of picture that's broken down into different parts and we'd say try to put that together in your head and tell me what that thing is or how you would use that object we also often give people different very complicated figures and ask them to draw those to see can they perceive all the details can they synthesize them and put them together in a whole and then finally we're going to look at executive functioning which is a complex process that involves planning something or sort of seeing that there's a problem in the environment planning how to go about solving that putting together the different abilities you need to do that or organizing yourself putting that plan into place and then making adjustments as there have been changes in that plan and so we might assess this with very complex problem-solving tasks where we have increasing demands for abstract thought or we could test this by what we call response inhibition tasks so can a person not do what they would normally do and instead give an answer that's different from how they would do that and a classic one of these is where we give people a word that's printed in a color so for example we might give them the word red but the color of the ink is green and we say don't read the word tell us the color of the ink we all are so trained to read it is very hard to suppress that reading instinct and give a response that's different so it's hard to say green when you see the word red and that's an aspect of executive functioning and then finally we want to look at speed of processing so is there efficiency in the brain how quickly they do the different areas of the brain communicate with each other so that a person can respond quickly and accurately we might look at how long it takes somebody to come up with a response we might look at how quickly they can respond verbally versus giving us a written or a motor response and as I said that's a process that seems to require integration of the whole brain rather than is impacted by one specific area of the brain so thinking about all those different areas of brain functioning were that we would assess you can appreciate how different activities could be impacted by cognitive dysfunction so I mentioned driving very dependent on attention and processing speed but also visual spatial abilities for navigation or remembering where something is in the environment financial management can be impacted by prospective memory as well as workingmen memory mental arithmetic medication management is another one organizing medications in a pillbox remembering when to take them having a memory of did I take my medication already because taking too much is as bad as taking too little certainly work can be impacted by cognitive cognitive dysfunction managing child care you know planning for not only your own needs but I've got to get my child's lunch together get him or her dressed off to school meet the bus after school cooking household chores a lot of folks have difficulty cooking because they're having more trouble getting things ready at the same time they may leave ingredients out of a recipe or may start to cook food on the stove go to answer the phone and then completely forget there was food cooking on the stove until the fire alarm goes off other areas that can be impacted by cognitive dysfunction include somebody's hobbies and social activities and this is really a shame because as people feel they're not quite as good at doing things they've always enjoyed they start to withdraw from things and their world starts to get very very small in particular when people have difficulties with language expression comprehension they tend to withdraw socially and thus don't get that social interaction that's so important for supporting mood and you can imagine that all of this can definitely impact somebody's self-esteem and self-confidence a lot of people end up saying you know I used to be a bright person and now I just feel stupid and I'm embarrassed and I don't like how I am and that can be really really devastating another area that's impacted is communication and intimacy and I'm not talking just about sexual intimacy because that could be a whole nother webinar on its own but that ability to communicate your inner thoughts and feelings to somebody and make yourself understood by others and that's a real human need that can be cut off when somebody's having significant cognitive problems and then further as I've alluded to several times mood can impact cognitive efficiency and house how well somebody can do the things they used to do how motivated they might be to do things how well they can get along with others especially if mood changes include irritability or temper outbursts so kind of along those lines some problems that kind of overlap with mood one is what we call a nose agnosia or it's sort of a lack of awareness of one's own problems and so I'll see this sometimes people come in and I'll ask how they're doing cognitively and they'll say I'm doing great I haven't noticed any changes since my tumor or surgery not a problem whatsoever I'm going back to work next week and then I'll look at the family members will say oh my gosh I can't believe how many problems this person is having and they just don't get it well that's true they don't get it because they've lost that feedback loop that tells them that what they're doing isn't working or that they have a problem so it's not like they're being in denial so much they just really don't get it that they are different than how they used to be another potential problem is what we call apathy or that lack of drive to engage in things that lack of initiative and a lot of times I'll hear from people well all he does is sit around and watch TV all day and they may label that as that person being depressed and it may be true that the person is depressed but what it may be happening is that person just has apathy and will say well if you get them going on something will they keep doing it and will they say later that they enjoyed it and a lot of times they'll say yeah yeah true so what we say is so they don't have the initiative you need to kind of be their initiative for them get them started take them somewhere because on their own they won't do it another thing that happens a lot of time is that people become increasingly frustrated and irritable or I like to think of that as they've lost their buffer zone they've lost that sort of feeling of oh I'm angry about something but okay I can deal with it I can keep it inside instead that anger might come right to the surface and people will have outbursts and later might feel terrible about what they've said to other people but their frustration is just right there on the surface so we think of that as they've lost their emotional breaks or as I said they've lost that buffer zone that allowed them to modulate their responses to irritations in the environment so kind of switching gears a little bit I want to talk briefly about rehabilitation there's a lot of people wonder well is it worthwhile does it do any good and I think that anytime somebody can give be given tasks or exercises or training that allows them to think that allows them to actually be a part of their own recovery is a really good thing it can be very empowering to say I'm going to do these exercises or these procedures every day or every third day or something because I want to be better it's a very forward-thinking attitude and also I think when somebody is working with professionals like an occupation occupational therapist or a speech therapist they are also connected with somebody who cares about them and is invested in them getting better and that that feels really good so for those reasons alone rehabilitation to my mind is worthwhile even for individuals who have very aggressive tumors and might not have a long life expectancy if there is some area where they could obtain greater autonomy by going through some rehabilitation I feel it's worthwhile a lot of people ask me well should I just invest in some computer-based drills and exercises I see a lot of things advertised out there would that be good would that help me retrain my brain and I would say that the thinking now is that those brain training games and exercises have a lot of a lot of claims about how much improvement they give you I will say that people who do them diligently do get better at the gains and the drills that are in those computer programs it is not clear to me that those translate into real-world improvements however I will say that a lot of times when people get better at doing certain games and drills they have more confidence so when they go to do a real-world task they go in there with more confidence with more expectation that they can do it and lo and behold they just do a little bit better so whether it's the actual underlying ability that got trained or just the attitude and confidence that got trained it could be a good thing certainly I have never seen anybody be hurt by doing computer-based games and drills so if you know if you've got the money to spend on them and the time to do them it's not going to hurt you it might help you but it might not help you quite as much as the game manufacturers would like you to believe to me the biggest bang for the buck and rehabilitation is compensation strategies so finding out different ways to do things or putting in different reminders to kind of support functioning so what can be really useful here is to work with an occupational therapist or even a vocational therapist who can maybe go into your workplace kind of go over with you the kinds of tasks that you're expected to do and think about some modifications that could be made in that environment or to the way you do the tasks that would allow you to still do them so for example sometimes when somebody has a tumor up in their right parietal lobe they may have a little bit of neglect syndrome for the left side of their visual space so unless they turn their head they're not going to see things that are is maybe on the left side of their desk so one thing that can happen is we can shift everything over to the right or we can cue a person just turn their head periodically to make sure they're not missing anything over on that side also with the wonderful tech ecology that is available today people can use all kinds of reminders and calendar functions on their phones their iPads their computers whatever there's a lot of wonderful voice-activated software that people can use to again set up calendars to write letters to do all kinds of different things so it's really worthwhile for somebody to get together with a good therapist to figure out what their needs are what it is that they want to do in life and how they can interface with devices and technology technology that is available I mentioned having a therapist go into the workplace but even having an occupational therapist who can go into your home and see how it is that you do things and make suggestions to how they can be done more effectively and safely can be really valuable again if a person can obtain more independence and more autonomy a lot of other good things are going to follow from that including that sense of confidence now another thing I've kind of alluded to several times is that there can be changes in a person's mood and also in a bit of their personality and well as their abilities and this can definitely change dynamics in a relationship and not just a couple relationship but a whole family relationship or relationship with one peer one's peers so if you think about sort of romantic or marital relationships people sort of develop a dance that they do over time and when one person gets sick or has a change in brain functioning how they do that dance is going to be different and then it's a challenge for the partner to find a new way to dance with that person and so there can be a lot of adjustments that go on partly there can be a lot of change in roles and this can be quite challenging for couples especially when maybe one person was sort of the head of the household or the breadwinner and now maybe somebody who was the homemaker it has to re-enter the workforce to support the family and there can be resentment involved in that there can also be the potential for a lot of positive that comes out of that as people get a chance to explore explore different roles for example maybe a man who was previously in the work for us but now is going to be at home may find that is very rewarding to spend more time with his children or maybe if the wife is in the home initially and it enters the workforce she may find that there are a lot of things that she could do that she didn't previously appreciate about herself and this could be true whether it's a male or a female re-entering the workforce there can also be changes in roles at home like maybe the person who used to always pay the bills doesn't do that anymore there can be changes in how household chores are delegated and it takes a little bit of adjustment especially when there's a change in household chores and the person who used to do them isn't quite thrilled with how the other person does certain things and I will take a case in point filling and emptying the dishwasher a lot of us have liked to fill our dishwashers a certain way and we feel if it's not done exactly that way it's not right and the reality is it probably is right it's just different so the challenge is to accept that's something that's different is still okay there can be changes in emotional responsive responsive 'ti I mentioned a moment ago how sometimes people can get more irritable or have more of a hair-trigger for their irritability sometimes it goes the other direction and people are less responsive and that can be hard for family members who think that their loved one is disengaged from them or doesn't care when really the person does care but just doesn't express it as readily as they used to there can be changes or even conflicts and coping styles within members of a family some people are very good at accessing support from their community and they may go out and tell everybody what's going on with their family whereas the other people may want to keep that a lot more private and kind of internally cope with it a little bit more and people can come into conflict when they have different ways of getting support for their emotional needs there can also be changes in perceptions of burden and especially you know maybe the person with the brain tumor feeling like I don't want to burden my family with this so therefore I'm going to keep my thoughts and feelings to myself because I don't want them to hurt any more than they already are whereas the other people and the family might really to better understand how the person with the brain tumor is doing and is upset that that person isn't more open to it with them as to how they're feeling and with all of this going on sometimes we lose in a family dynamic who is the quote-unquote patient it's not just the person with the brain tumor as the whole family dynamic has changed and everybody is impacted but in different ways and it's important for us to understand how everybody's impacted so we can maybe ourselves offer the support they need or connect them in with community resources that can offer the support and certainly this is where organizations like the American brain tumor association can step in to offer educational support as well as connect people in with support groups both for individuals who are the identified patient and their loved ones so speaking of which support can help in so many ways to help people feel more connected in again with their communities and not so isolated or like there is something so wrong with me that I am different from everybody else it's also important for people to get support to understand that their new normal is okay maybe they can't do all the things they used to do or do them in the way they used to do them because of cognitive changes but people can adjust around them so maybe some person used to have an extraordinary memory and remembered all the facts and details and can't do that anymore well maybe somebody else does that or maybe somebody else is in charge of writing those things down and reminding everybody else of these things it's important to practice new patterns of communication so for example if people's speech is affected they may have to communicate with very few words or family members may have to communicate to them with very few words in short bursts so that the person can understand what is being asked of them rather than long complex sentences where if a person has an attention problem they lose the thread midway through the sentence so we might sit down with a patient and a family member and work on that together so that they can communicate more effectively another thing that I find is a real challenge for individuals with a brain tumor is to learn how to for help a lot of folks have been so independent and usually were the glue for the family and now they have to ask others for help and that is very hard and humbling to do it is also sometimes hard to decline help and decline it in a nice and supportive way or to accept it in a nice and supportive way so I encourage people to think about the things that they need or could use help with and learn how to ask for those very specific things from different people and if they spread that out amongst enough people no individual person feels overly burdened and I also like to point out that people want to help your friends your neighbors your extended family they want to help but they need to be told how they can help so if you need a family meeting to sit down maybe with a couple loved ones and map out what things can be useful then develop a plan for who is going to fill in and provide that help and then most important of all and this is the core to support groups is for people to realize they're not out there alone there are a lot of other individuals a lot of other families dealing with these same issues so it's important to just kind of realize that gosh I'm not the only one there are other people who have learned clever ways to deal with that and maybe I can learn something from other people's experiences so with that I'm going to wrap up our time together I think we're hitting right at an hour but I want to acknowledge finally the wonderful person people that I have a privilege to work with here at the University of Virginia and this is our neuro-oncology care team each member of this team is so outstanding on what they do and again I'm so proud to be a part of them and to participate in caring for people with brain tumors so with that I will say thank you for your participation and I will sign off unless we have some questions
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Channel: American Brain Tumor Association
Views: 8,491
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Length: 61min 45sec (3705 seconds)
Published: Thu Dec 20 2018
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