What the Heck is Dysphagia? You Probably Already Know About It! Listen On!

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hi everybody. Welcome to another brand new episode of The Truth, Lies Alzheimer's Show with your host, Lisa Skinner. And today I want to talk about something that many of you actually might be aware of, but don't recognize it by its medical term. So a lot of people who live with Alzheimer's disease and related dementia in their later stages of the disease have difficulty swallowing. I hear this from so many people. So it is a common occurrence. It doesn't happen with everybody, but it does happen to many. It actually has a name, a medical term. It's called dysphagia or dysphagia, and it is a common issue among individuals with dementia. The prevalence of dysphagia in people with dementia varies depending on the stage of the dementia and on other factors. So this is what I'm going to share with you today. Studies suggest that the prevalence of dysphagia in individuals with dementia can range from 13% to 57%. So that really means that up to more than half of people living with dementia develop difficulty swallowing. But the higher rates observed are in the more advanced stages of the disease. Dysphagia in individuals with dementia can present significant challenges and risks. I'm going to share with you some of those more common symptoms and challenges. So here are some of the symptoms that fall into the category of dysphagia. Common symptoms of dysphagia may include— the most common one is difficulty swallowing, which is called dysphagia. Another symptom is pain while swallowing. Another one is sensation of food sticking in the person's throat and sensation of that. Not necessarily that the food is stuck, but it feels like that to them, or in their chest. Regurgitation, coughing or choking while eating and drinking, unintended weight loss, and recurrent chest infections or pneumonia. Signs of dysphagia in individuals with dementia may also include, and I mentioned this, just a minute ago, coughing or choking during meals and/or taking a long time to eat, repeated respiratory infections like pneumonia, weight loss, pocketing of food in the cheeks, and changes in voice quality after eating. Some of these complications can lead to serious situations such as malnutrition, dehydration, Aspiration pneumonia, and what that means is food or liquid enters the airway and ends up in the lungs instead of the stomach, and overall decline in health and quality of life. Individuals with dementia may already be at increased risk for these complications due to their already existing underlying condition. Now, the assessment and management process for dysphagia involves a comprehensive evaluation by a healthcare professional. Some of that assessment process includes speech— by a speech-language pathologist, and the assessment may include a clinical evaluation They may perform swallowing studies such as videofluoroscopy or fiber-optic endoscopic evaluation of swallowing and dietary modifications. So the fiber-optic endoscopic evaluation, they actually stick a scope down the person's throat and watch how they're able to swallow and can pick it up that way. Treatments for dysphagia in individuals with dementia may involve strategies to improve swallowing function, such as modifying food and liquid consistencies, teaching swallowing techniques, and positioning adjustments during meals. In other words, sitting the person up at a 45-degree angle is much better than completely upright or leaning back farther than a 45-degree angle. In some cases, feeding tubes may be considered if swallowing difficulties are severe and pose a significant risk. I'm gonna share with you, because I've had this personal experience with my own mother, She did not suffer from a brain disease that resulted in dementia. Her mind was perfectly clear and sharp, but she lived with a feeding tube. And I was— she lived with us for 3 and a half years until her passing. And what caused her swallowing difficulty and aspirating situation was She had had multiple strokes over a decade period of time, and she— the last stroke she had was on the opposite side of her brain from her previous strokes, and that caused her to aspirate. So in other words, anything that she ingested by mouth, some of it would go directly into her lungs and then the rest in her stomach. And the problem with aspirating is anything that goes into the lungs can grow bacteria and turn into aspiration pneumonia. And from what her doctor told us, aspiration pneumonia eventually becomes resistant to antibiotic treatments, and people eventually die from aspiration pneumonia because it just stops accepting, uh, or responding to any antibiotic. And this is exactly what happened with my mom. She continued to— well, so she had a feeding tube, so we fed her through this feeding tube because she was experiencing a lot of the things that I just described to you. And then she, uh, had a feeding tube surgically connected to her tummy, and we fed her with a formula through the feeding tube. However, what happened with her, and this is very common, is even though she's not ingesting anything orally by the mouth, you still naturally swallow your own saliva, and bacteria lives in your saliva. So because some of her saliva was going directly into her lungs instead of her stomach, she kept developing aspiration pneumonia. And this was over about a 2-year period of time. And the doctor actually said to me, I'll never forget this, one day when I took her to the doctor for a checkup, he said to me, um, kind of off to the side, Lisa, I just want you to be prepared that she continues to develop aspiration pneumonia. You know, the bacteria gets into her lungs from swallowing her saliva. And I just want you to be prepared that one of these days it's not going to respond to antibiotics. It'll just stop. And that will be the end. And that's exactly, exactly what happened. I remember the last time she was in the hospital and it wasn't responding to antibiotics, her pneumonia. And I thought maybe that was it, but it finally did. They kept just trying a different variety of antibiotics. And I knew if she gets it again, that's gonna be it. And that's exactly the way it played out. So This does happen in people who don't have dementia, but it's very, very common in people with dementia because they forget to swallow. The brain is damaged to the point where it doesn't remember how the swallowing function happens. So I just want you to be aware of that. Caregivers like me of individuals with with dementia, even though, you know, my mom didn't have the dementia, do play a crucial role in ensuring that their loved ones receive appropriate care and support. Caregivers should be educated on safe feeding techniques, signs of swallowing difficulties, and strategies to help manage dysphagia-related challenges. And I can attest to all of that. We were trained. I was trained. My husband was trained on feeding through a feeding tube, but you still have to look for, you know, a variety of complications and be prepared to react to them. So it's, it's a difficult position to be put in, and this is the very reason why people with feeding tubes are not accepted in assisted living. Environments or memory care environments because those are not medical models. They're social models, and they do not want the liability of having residents who need to be fed through feeding tubes. So what I'm gonna share with you now is I told you my story, but this is a story, and I'm gonna read you excerpts from this story. That was written by the daughter of a woman living with dementia. She care— was the primary caregiver for her mom, and her goal is to share her journey with her mom, with everyone that she can reach, in hopes it'll help them if they are in this situation. So this is just an added resource for you. I found this on the website www.dementiawho.com, so you can check out that site. She does not give her name, but this is her personal story, and I thought it was pretty moving, so I wanted to share it with you. But visit her website for maybe more stories like this because she does, she is sharing her journey taking care of her mother with dementia on this site in her blog. So she starts out saying, my mother's struggles with drinking and eating continue as her Alzheimer's worsens. Dysphagia is when someone has difficulty swallowing food or drink. Often occurring as dementia progresses. Neurological changes caused by Alzheimer's disease affect the parts of the brain that control swallowing, as well as the person simply forgetting what to do with the food in your mouth. And this kind of piggybacks on some of the symptoms where I mentioned that they pocket the food in the side of their mouth. That's very common. And there are other factors as well that can result in dysphagia. She says, "I see this daily with my mom. Every time she takes a drink, she holds it in her mouth for what seems like a long time, then remembers to swallow, taking a big gulp. Mom never gulped before. You can hear her swallow and it sounds painful." but I hope it's not. Then it's wait time. Did this swallow cause her to cough? The main symptom my mom experiences with aphasia is coughing, along with a gurgling, wet sound when she talks. A few seconds or minutes later, she scrunches up her face, struggles to breathe, and starts coughing and spluttering, unable to stop or catch her breath. Before my mom got her feeding tube, she was having trouble with these same things. And I agree with the woman who writes this. It is so distressing and either ends up with her sneezing or coughing up phlegm. The difficulty is when she doesn't clear her throat properly. She says, "I try to help her, but she can't manage it even when I show her how. The same applies to blowing her nose. When she tries, it lacks power, so nothing really comes out. My last resort is patting her back to help lift the cough from her chest, but then she blames me for hitting her. So I now just rub her back, which isn't as effective." So prevention is the key thing for me, working on different textures, fluid thickness to find the right consistency for my mom to tolerate. I remember doing exactly the same thing with my mom's formula. Fluids are a particular problem for my mom, she continues. Fluids are key for mom as it helps prevent dehydration and a host of other problems like urinary tract infections, constipation, and other issues. She isn't interested in her food or drink anymore, which isn't surprising given, given how traumatic this is for her. She doesn't look at her food, so I help guide the spoon right to her mouth. Slowing down her eating and controlling portion size was a recommendation from my mom's speech and language therapist to help reduce her dysphagia symptoms. In the last week, my mom has struggled the most. Almost every time she drinks, she ends up coughing, tears well in her eyes, her nose is streaming, and she's in complete distress. We tried smaller portions, softer foods, and thickened drinks. Today I managed to control it by increasing her thickener to the third level, making her drinks move like sludge. She says it's disgusting, but it seems to work and reduces the frequency of her coughing episodes. My biggest fear, she says, is my mom aspirating on some food, leading to a chest infection or pneumonia. That situation to me is terrifying, especially at night when my mom is unable to clear her throat at all. Recently she held fluid in her throat sounding like she was drowning. I'm scared most nights, so I now raise her bed— head so that fluid doesn't stay in her throat and she sleeps mostly in an upright position. And she says, thank God we have a hospital bed. And that's exactly what I was instructed to do with my mother. She slept at a 45-degree angle with a pillow, you know, to support her. This was even with a feeding tube. And she says, these are scary times. I'm overly stressed, and I think the distress has worsened her dementia. So understanding the impact on dementia caregivers, which I think only stands to reason based on my experience that I've shared with you and on hers. As a dementia caregiver, managing dysphagia in a loved one with Alzheimer's is both physically and emotionally exhausting. Or even if they don't have Alzheimer's, the constant vigilance required to ensure that your loved one doesn't choke or aspirate can definitely take a toll on your mental health. The fear of a medical emergency is always present, especially at night. The emotional strain is so much worse as you watch your loved one struggle with someone as fundamental as eating and drinking. And then she says, she, she confesses, that the stress and anxiety is getting to me. I recognize these feelings and look for support from family and other caregivers. Online forums and support groups are also particularly helpful. If it gets too much, then I might get counseling again. If you haven't tried it, think about getting professional counseling as it might be beneficial to help you cope. With the emotional burden. And here are her tips on managing dysphagia for dementia caregivers. Ensure upright positioning. We talked about that, but she kind of expands on that by saying, ensure your loved one is sitting as upright as possible during meals and for at least 30 minutes afterwards. I always had my mom at a 45-degree angle. Use pillows for support or an adjustable backrest. If your loved one is bed-bound, consider using an adjustable bed backrest or positioning wedges, or the more expensive option of a mattress elevator. And you can ask your occupational therapist if they can get a hold of one for you. Which is intended to keep them upright. Encourage eating slowly and taking small bites. This helps prevent choking and makes swallowing easier. Use a smaller spoon to help control portions and pacing. She added padding to the spoon, or you can buy adaptive cutlery to make it easier for your loved one to hold it themselves. Minimize the distractions while you— while they're eating. Turn all the distractions that are surrounding their environment, like a TV or radio, during the meal so your loved one can focus just on eating and be really paying close attention to the entire process. Use contrasting plate colors and good lighting to help them see the food clearly. This can improve their ability to eat independently and reduce confusion. Track the meals. Keeping a food diary to track successful meals and note any reactions like coughing or breathing difficulties. This information can be so valuable when discussing your loved one's condition with healthcare professionals. It can help identify patterns and triggers and allow for better management strategies. Modifying the food textures. Keep food soft and serve it with sauces or gravies to make swallowing easier. Avoid mixing solids and liquids such as yogurt with lumps or soups with bits. Steer clear of stringy foods like melted cheese, celery, and foods with pips, or seeds. Ensure food is appropriately prepared to minimize the risk of choking. Offer frequent, more, and smaller meals to avoid overwhelming your loved one. This can help them eat more comfortably and also reduce the risk of choking. Finger foods can be a good option if your loved one struggles with using utensils. There is an ex— she says there's an excellent recipe book by Dorset Healthcare University NHS Foundation Trust. And the name of the cookbook is, or the recipe book is Tips for Dysphagia Cooks at Home. And you can also find that on her website, dementiawho.com. Provide patience and encouragement. It's hard, but try to be patient and offer encouragement during the meals. Use verbal and visual cues to help your loved one understand what to do. Ensure all food is swallowed and not held in the mouth. Hand-over-hand techniques can also help guide them. And make the process smoother. Check the mouth to make sure it's clear after eating and they're not pocketing anything in their cheeks, and ensure that you maintain— help them maintain good oral hygiene. Plan meals around alert times. What does that mean? Well, plan the meals around the times when your loved one is most alert and receptive. This can help them eat more effectively and reduce frustration. Monitor their alertness patterns and adjust mealtimes accordingly. Educate yourself and brush up on first aid skills. Brush up on first— brushing up on first aid skills and learning how to handle choking incidences can be life-saving. Educate yourself on dysphagia and the various levels of severity. Work with your medical specialist who can provide you with valuable insights and techniques to manage the condition effectively. It's so important to address the emotional and social needs of your loved one with Alzheimer's. The frustration and distress your loved one may feel due to dysphagia can be overwhelming. I couldn't agree with that statement more. Um, offering emotional support and ensuring your loved one feels heard and understood is crucial. Engage in activities that bring them joy and a sense of normalcy, even if something simple like a favorite music playlist or a pleasant walk in the garden. Seek specialist medical help from a speech and language therapist. We did that. Occupational therapist or the doctor. They can assess your loved one's swallowing abilities and provide specific recommendations. They may even suggest exercises to strengthen the swallowing reflex or adjustments to food and drink consistently, as well as provide advice on how to prepare, prepare food and what to avoid. And dealing with the challenging times. Living with dysphagia with Alzheimer's disease or without Alzheimer's disease, and I'm throwing that two cents worth in, is challenging, no question, for both your loved one and for you as a caregiver. As you have seen from that she shared with her personal experience. By understanding this condition, seeking professional advice, and implementing practical tips, you can manage dysphagia more effectively and improve your loved one's quality of life. Just remember, she adds, you're not alone in this journey. Reach out for support when needed. That's what she's doing. And take care of your own health and well-being as you care for your loved one. I'm going to give you her website one more time so you can access that and follow her blog. It's www.dementiawho.com. Hope you found these stories exhilarating and useful, and if you do find yourself in this same situation, it won't be completely foreign to you. You will have a little bit of an overview in what to do and what to expect. And as always, we want to make that possible for every one of you out there. Who is caring for somebody with dementia, or perhaps without, that is faced with these challenges. Thank you so much for being here again with me today. I appreciate you so much. I look forward to you continuing to join me on my podcast every week to learn more information about living with Alzheimer's disease and dementia. Have a great week. Take care of yourself, and I'll look forward to our next episode on the Truth, Lies Alzheimer's Show. And again, I am your host, Lisa Skinner. Talk to you next week. Bye for now.

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