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Understanding Swallowing Difficulties in Persons with Dementia
Dementia is often associated with its cognitive impact like memory loss but there are also physical effects, like dysphasia, that cause difficulty with swallowing. Dr. Luis Riquelme discusses how to recognize and address these difficulties.
Featured Speaker:
Luis Riquelme, PhD, CCC-SLP, BCS-S
Luis Riquelme, PhD, CCC-SLP, BCS-S is the Director of Speech-Language Pathology. Transcription:
Understanding Swallowing Difficulties in Persons with Dementia
Joey Wahler (Host): Dementia is often associated with its cognitive impact, like memory loss. But there are physical effects like dysphasia, which causes difficulty swallowing. So, we're discussing how to recognize and address that.
This is Maimo Med Talk, a podcast from Maimonides. Thanks for listening. I'm Joey Wahler. Our guest, Dr. Luis Riquelme. He's Director of Speech Language Pathology for Maimonides. Dr. Riquelme, thanks for joining us.
Dr Luis Riquelme: Thank you for having me.
Joey Wahler (Host): So first, how common is it for those with dementia to develop difficulty swallowing?
Dr Luis Riquelme: Well, it really varies on who you read or what numbers we see. But we know that as the dementia progresses, the difficulties with eating increase. And some estimates are about 20% to 30% of people with dementia. Other estimates are much higher especially again, as I said, as the condition increases in severity.
Joey Wahler (Host): So when we say difficulty swallowing, what symptoms exactly are we talking about?
Dr Luis Riquelme: So, what's interesting is that in persons with dementia, first of all, we should clarify that there are different types of dementia. So, Alzheimer's accounts for a little under 50% of those with dementia. There are other types like vascular dementia and Lewy body disease, et cetera. And so, the characteristics are different. But in general, what we start seeing are two patterns of difficulties with eating and swallowing. One of those is where the person starts holding the food in their mouth and not swallowing. Technically, they can swallow well, but they're holding the food in their mouth. And that's been a big enigma for a while. And many of us that do research in this area are now wondering how much of it is an actual physical problem where the motor planning component of the oral part, the chewing, the processing, the food breakdown. We also may think that it has to do with the cognitive changes. In other words, one of the difficulties with memory relates to attention. And so if the person is not paying attention, they kind of forget that that food is in their mouth because they're paying attention to maybe the fly that's outside the window or the way the light bulb is flickering. And so, sometimes with a quick reminder, whether it's verbal or by placing the utensil, the spoon or the fork, empty in their mouth again, it kind of gets the cycle going and they can go ahead and finish chewing and swallow.
Others, however, do present with difficulties where they might start coughing with some food, sometimes with liquids, sometimes with solids. They might start feeling leftover in their throat after they swallow. And depending on how advanced the dementia is, they might be able to tell us or they might not. If they can't tell us, maybe they start rejecting some foods. And so, that's when we need to become concerned about what's happening and then speak with the physician to get a referral for a swallowing evaluation and full workup to see what's happening.
Joey Wahler (Host): So since dementia of course can prevent patients from recognizing their own symptoms, how important is it for those around them to be aware of possible swallowing issues?
Dr Luis Riquelme: Oh, very important. There are some things that we sometimes don't really address. And there are some multifactorial aspects. For example, when we start seeing rapid weight loss. So, is the weight loss present because sometimes they forget to eat, they're forgetting their meals, you ask them if they had lunch, they'll say yes. But when you open the refrigerator, you see their lunch food is all still there. In other situations, they are not hungry at all. And so, they'll just yes you and tell their caregivers that, yes, they ate, but they really haven't.
I think some of the other signs are when they're staying away from certain foods and if we're with the person on a regular basis, then we would notice that they are having trouble, they're swallowing sometimes three, four times for one bite of food or, when they're swallowing, they're clearing their throat or coughing. And so, those are some of the big red flags.
One that isn't as obvious and sometimes is missed, is when the person starts showing signs of congestion, upper respiratory problems. They might even eventually develop a pneumonia. And sometimes that's related to, basically, what we call aspiration or food going down the wrong way. what's important to remember here is that it might be happening with some food consistencies not with others, right? Soft food versus hard food. Liquids, we swallow differently than we swallow other foods. So, there's a broad variety here. We have 32 pairs of muscles that are involved in really getting the food from the mouth through the throat and into the esophagus, which is the tube that goes to the stomach.
Joey Wahler (Host): So, what's the main danger when one has this swallowing difficulty? And when is it usually time to see a specialist?
Dr Luis Riquelme: Well, anytime any of those signs that I have mentioned, the throat clearing, the coughing, they're not eating as much, I would say those are amongst the top three. Anytime we notice that in our loved ones, then we do want to start discussing with the physician a referral for a swallowing evaluation. We don't want it to get to the point where they are so ill or they're admitted to the hospital, and then at that point, we would have a lot of extra work to do once we identify the problem. What's important here is that there are solutions that aren't necessarily moving towards things like feeding tubes or anything like that.
Sometimes, we have to realize that cognitive changes we start seeing in people over the age of 50 or 60 years old. So, we're already seeing changes in muscle mass and the way the muscle fibers are behaving and that's something we call sarcopenia. So if the muscles are weaker, that means that includes swallowing muscles, they may become a little weaker, and so it makes it a little more difficult to swallow. Therefore, maybe with some exercises, we might be able to strengthen up or regain tone in those muscles and so then improve the swallowing even in a person with dementia. And there are some interesting studies right now looking at some of the exercises that people that present cognitive decline or dementia are benefiting from.
Joey Wahler (Host): And in diagnosing and treating this, there's also something called a swallowing challenge. What is that?
Dr Luis Riquelme: Well, I mean, sometimes just eating is a challenge. And so, that's a term that some people use while we're doing our testing. When we present different textures to the patient to see how they handle them. We initially start with a clinical exam where we're checking the muscles, the voice, because the voice is at the whole laryngeal area or voice box as we commonly call it, is right at the top of the airway. So, it's part of the protective mechanism so that food or liquid don't go down the wrong way. So, that's part of our clinical exam, we're checking voice and we're checking the muscles and also getting a better history looking at chest x-rays, et cetera.
Often, we might recommend an instrumental exam, which could be an x-ray called a video fluoroscopy or a modified barium swallow where the patient is seated and we give them different food textures mixed with barium, which is a material so that we can see it on the x-ray, and then we take basically a movie, it's an x-ray in motion, to see how all the parts work. It's really all biomechanical in terms of this happens first, this happens next, how tight it squeezes, et cetera. Or we could do an endoscopy, which is a small fiberoptic tube passed through the nose with a little camera and we look down and see how the person is swallowing. Once we have that full picture, then we can determine, "Okay, what can the caregivers and what can the patient do so that they can continue to maintain their nutrition and their hydration and enjoy what they're eating?" Just because someone presents with dementia doesn't mean they are not enjoying what they eat.
Joey Wahler (Host): I think that's an important point to make. A few other things here. Switching gears a bit, doctor, relatively speaking, can you give us an idea of how many swallow specialists there are out there? And what is it about your background that made you so passionate about this area of work, I wonder?
Dr Luis Riquelme: So, we'll start with my passion, and I always say this, "I love eating." So, I don't want anybody telling me that I can't eat. To me, it's the science and the biomechanics behind it all that really got me extremely interested. As a speech language pathologist, our field is really this combination of artistry with medicine, with education. And so, it's just a nice combination of figuring out what are the parts of the puzzle when we do our evaluation, and then how do we find a resolution, and working with people, working with patients, working with their caregivers. And so, that's where my passion has come in and that of my colleagues.
In terms of how many are out there? Well, let's see. Right now, there are board-certified specialists in swallowing. And right now in the country, there are under a thousand of us in speech language pathology. So, that's not a lot. Often when we go to see another specialist, let's say a cardiologist or a dermatologist, we ask for a board-certified clinician. And in speech language pathology, we're not there yet. We are going towards that. So, it's always great to see is there a board-certified specialist in my area? But if there isn't, the area of swallowing disorders or dysphagia is a subspecialty within speech pathology. So usually if we check in with our local hospitals, we can call their department of Speech Pathology, and they might know either if in their outpatient clinics they have specialists or others in the area that might be able to see our loved one or see us if we're having difficulty swallowing.
Others that are evaluating and caring for swallowing disorders also involves specialists from ENT or ear, nose and throat, otolaryngology, from gastroenterology, from neurology, of course, radiology, because we collaborate in conducting the x-rays and, of course, clinical nutrition or dieticians. So, it's a whole team effort. And any one of us that sees the patient first might be then referring to some of the others as needed.
Joey Wahler (Host): Doc, as you said a moment ago, we all love to eat and especially as people get older, often even when they can't do other things they used to do, they can still eat and they can still enjoy that. And so if you take that away from them, that's a big hole in their life. Final question for you, how rewarding is it to know that you're helping many people to preserve or retain or get that back?
Dr Luis Riquelme: I have seen people go through this. I have seen caregivers go through this where many times others are recommending these feeding tubes. And by the way, in the case of dementia, we have data since the late 1990s demonstrating that, for someone with advanced dementia whose nutrition is declining, tube feeding is not the way to kind of fix the decline in nutrition because, at that point, the bodies are just not absorbing the nutrients and so on. And I always say, "Let's think about dignity and quality of life and just figure out what that person can swallow safely and allow them to enjoy what they like by mouth for as long as possible." The idea of saying or suggesting that someone receive what we say be NPO or receive nothing by mouth, to me, is horrendous. We need to eat by mouth to produce saliva so that our mouth feels better and to enjoy the taste, the flavors, the smell of food, which even in dementia we know people still enjoy.
Joey Wahler (Host): Well, very interesting to hear more about an issue that perhaps doesn't get as much attention as it should. Folks, we trust you are now familiar with swallowing difficulties associated with dementia. Dr. Luis Riquelme, thanks so much again.
Dr Luis Riquelme: Well, thank you very much for having me.
Joey Wahler (Host): And for outpatient speech pathology services, please call 718-283-8961. Again, 718-283-8961 or visit maimo.org/treatments-care/center-for-speech-language-pathology. When you're all done swallowing, you can take a gulp at that web address.
Dr Luis Riquelme: There you go. Or you can just search for swallowing at maimo.org.
Joey Wahler (Host): Sure, sure. We're being technical here, doctor. Now, if you found this podcast helpful, please do share it on your social media. And thanks again for listening to Maimo Med Talk, a podcast from Maimonides. Hoping your health is good health. I'm Joey Wahler.
Understanding Swallowing Difficulties in Persons with Dementia
Joey Wahler (Host): Dementia is often associated with its cognitive impact, like memory loss. But there are physical effects like dysphasia, which causes difficulty swallowing. So, we're discussing how to recognize and address that.
This is Maimo Med Talk, a podcast from Maimonides. Thanks for listening. I'm Joey Wahler. Our guest, Dr. Luis Riquelme. He's Director of Speech Language Pathology for Maimonides. Dr. Riquelme, thanks for joining us.
Dr Luis Riquelme: Thank you for having me.
Joey Wahler (Host): So first, how common is it for those with dementia to develop difficulty swallowing?
Dr Luis Riquelme: Well, it really varies on who you read or what numbers we see. But we know that as the dementia progresses, the difficulties with eating increase. And some estimates are about 20% to 30% of people with dementia. Other estimates are much higher especially again, as I said, as the condition increases in severity.
Joey Wahler (Host): So when we say difficulty swallowing, what symptoms exactly are we talking about?
Dr Luis Riquelme: So, what's interesting is that in persons with dementia, first of all, we should clarify that there are different types of dementia. So, Alzheimer's accounts for a little under 50% of those with dementia. There are other types like vascular dementia and Lewy body disease, et cetera. And so, the characteristics are different. But in general, what we start seeing are two patterns of difficulties with eating and swallowing. One of those is where the person starts holding the food in their mouth and not swallowing. Technically, they can swallow well, but they're holding the food in their mouth. And that's been a big enigma for a while. And many of us that do research in this area are now wondering how much of it is an actual physical problem where the motor planning component of the oral part, the chewing, the processing, the food breakdown. We also may think that it has to do with the cognitive changes. In other words, one of the difficulties with memory relates to attention. And so if the person is not paying attention, they kind of forget that that food is in their mouth because they're paying attention to maybe the fly that's outside the window or the way the light bulb is flickering. And so, sometimes with a quick reminder, whether it's verbal or by placing the utensil, the spoon or the fork, empty in their mouth again, it kind of gets the cycle going and they can go ahead and finish chewing and swallow.
Others, however, do present with difficulties where they might start coughing with some food, sometimes with liquids, sometimes with solids. They might start feeling leftover in their throat after they swallow. And depending on how advanced the dementia is, they might be able to tell us or they might not. If they can't tell us, maybe they start rejecting some foods. And so, that's when we need to become concerned about what's happening and then speak with the physician to get a referral for a swallowing evaluation and full workup to see what's happening.
Joey Wahler (Host): So since dementia of course can prevent patients from recognizing their own symptoms, how important is it for those around them to be aware of possible swallowing issues?
Dr Luis Riquelme: Oh, very important. There are some things that we sometimes don't really address. And there are some multifactorial aspects. For example, when we start seeing rapid weight loss. So, is the weight loss present because sometimes they forget to eat, they're forgetting their meals, you ask them if they had lunch, they'll say yes. But when you open the refrigerator, you see their lunch food is all still there. In other situations, they are not hungry at all. And so, they'll just yes you and tell their caregivers that, yes, they ate, but they really haven't.
I think some of the other signs are when they're staying away from certain foods and if we're with the person on a regular basis, then we would notice that they are having trouble, they're swallowing sometimes three, four times for one bite of food or, when they're swallowing, they're clearing their throat or coughing. And so, those are some of the big red flags.
One that isn't as obvious and sometimes is missed, is when the person starts showing signs of congestion, upper respiratory problems. They might even eventually develop a pneumonia. And sometimes that's related to, basically, what we call aspiration or food going down the wrong way. what's important to remember here is that it might be happening with some food consistencies not with others, right? Soft food versus hard food. Liquids, we swallow differently than we swallow other foods. So, there's a broad variety here. We have 32 pairs of muscles that are involved in really getting the food from the mouth through the throat and into the esophagus, which is the tube that goes to the stomach.
Joey Wahler (Host): So, what's the main danger when one has this swallowing difficulty? And when is it usually time to see a specialist?
Dr Luis Riquelme: Well, anytime any of those signs that I have mentioned, the throat clearing, the coughing, they're not eating as much, I would say those are amongst the top three. Anytime we notice that in our loved ones, then we do want to start discussing with the physician a referral for a swallowing evaluation. We don't want it to get to the point where they are so ill or they're admitted to the hospital, and then at that point, we would have a lot of extra work to do once we identify the problem. What's important here is that there are solutions that aren't necessarily moving towards things like feeding tubes or anything like that.
Sometimes, we have to realize that cognitive changes we start seeing in people over the age of 50 or 60 years old. So, we're already seeing changes in muscle mass and the way the muscle fibers are behaving and that's something we call sarcopenia. So if the muscles are weaker, that means that includes swallowing muscles, they may become a little weaker, and so it makes it a little more difficult to swallow. Therefore, maybe with some exercises, we might be able to strengthen up or regain tone in those muscles and so then improve the swallowing even in a person with dementia. And there are some interesting studies right now looking at some of the exercises that people that present cognitive decline or dementia are benefiting from.
Joey Wahler (Host): And in diagnosing and treating this, there's also something called a swallowing challenge. What is that?
Dr Luis Riquelme: Well, I mean, sometimes just eating is a challenge. And so, that's a term that some people use while we're doing our testing. When we present different textures to the patient to see how they handle them. We initially start with a clinical exam where we're checking the muscles, the voice, because the voice is at the whole laryngeal area or voice box as we commonly call it, is right at the top of the airway. So, it's part of the protective mechanism so that food or liquid don't go down the wrong way. So, that's part of our clinical exam, we're checking voice and we're checking the muscles and also getting a better history looking at chest x-rays, et cetera.
Often, we might recommend an instrumental exam, which could be an x-ray called a video fluoroscopy or a modified barium swallow where the patient is seated and we give them different food textures mixed with barium, which is a material so that we can see it on the x-ray, and then we take basically a movie, it's an x-ray in motion, to see how all the parts work. It's really all biomechanical in terms of this happens first, this happens next, how tight it squeezes, et cetera. Or we could do an endoscopy, which is a small fiberoptic tube passed through the nose with a little camera and we look down and see how the person is swallowing. Once we have that full picture, then we can determine, "Okay, what can the caregivers and what can the patient do so that they can continue to maintain their nutrition and their hydration and enjoy what they're eating?" Just because someone presents with dementia doesn't mean they are not enjoying what they eat.
Joey Wahler (Host): I think that's an important point to make. A few other things here. Switching gears a bit, doctor, relatively speaking, can you give us an idea of how many swallow specialists there are out there? And what is it about your background that made you so passionate about this area of work, I wonder?
Dr Luis Riquelme: So, we'll start with my passion, and I always say this, "I love eating." So, I don't want anybody telling me that I can't eat. To me, it's the science and the biomechanics behind it all that really got me extremely interested. As a speech language pathologist, our field is really this combination of artistry with medicine, with education. And so, it's just a nice combination of figuring out what are the parts of the puzzle when we do our evaluation, and then how do we find a resolution, and working with people, working with patients, working with their caregivers. And so, that's where my passion has come in and that of my colleagues.
In terms of how many are out there? Well, let's see. Right now, there are board-certified specialists in swallowing. And right now in the country, there are under a thousand of us in speech language pathology. So, that's not a lot. Often when we go to see another specialist, let's say a cardiologist or a dermatologist, we ask for a board-certified clinician. And in speech language pathology, we're not there yet. We are going towards that. So, it's always great to see is there a board-certified specialist in my area? But if there isn't, the area of swallowing disorders or dysphagia is a subspecialty within speech pathology. So usually if we check in with our local hospitals, we can call their department of Speech Pathology, and they might know either if in their outpatient clinics they have specialists or others in the area that might be able to see our loved one or see us if we're having difficulty swallowing.
Others that are evaluating and caring for swallowing disorders also involves specialists from ENT or ear, nose and throat, otolaryngology, from gastroenterology, from neurology, of course, radiology, because we collaborate in conducting the x-rays and, of course, clinical nutrition or dieticians. So, it's a whole team effort. And any one of us that sees the patient first might be then referring to some of the others as needed.
Joey Wahler (Host): Doc, as you said a moment ago, we all love to eat and especially as people get older, often even when they can't do other things they used to do, they can still eat and they can still enjoy that. And so if you take that away from them, that's a big hole in their life. Final question for you, how rewarding is it to know that you're helping many people to preserve or retain or get that back?
Dr Luis Riquelme: I have seen people go through this. I have seen caregivers go through this where many times others are recommending these feeding tubes. And by the way, in the case of dementia, we have data since the late 1990s demonstrating that, for someone with advanced dementia whose nutrition is declining, tube feeding is not the way to kind of fix the decline in nutrition because, at that point, the bodies are just not absorbing the nutrients and so on. And I always say, "Let's think about dignity and quality of life and just figure out what that person can swallow safely and allow them to enjoy what they like by mouth for as long as possible." The idea of saying or suggesting that someone receive what we say be NPO or receive nothing by mouth, to me, is horrendous. We need to eat by mouth to produce saliva so that our mouth feels better and to enjoy the taste, the flavors, the smell of food, which even in dementia we know people still enjoy.
Joey Wahler (Host): Well, very interesting to hear more about an issue that perhaps doesn't get as much attention as it should. Folks, we trust you are now familiar with swallowing difficulties associated with dementia. Dr. Luis Riquelme, thanks so much again.
Dr Luis Riquelme: Well, thank you very much for having me.
Joey Wahler (Host): And for outpatient speech pathology services, please call 718-283-8961. Again, 718-283-8961 or visit maimo.org/treatments-care/center-for-speech-language-pathology. When you're all done swallowing, you can take a gulp at that web address.
Dr Luis Riquelme: There you go. Or you can just search for swallowing at maimo.org.
Joey Wahler (Host): Sure, sure. We're being technical here, doctor. Now, if you found this podcast helpful, please do share it on your social media. And thanks again for listening to Maimo Med Talk, a podcast from Maimonides. Hoping your health is good health. I'm Joey Wahler.