Careful Eating Habits Limit Aspiration Risks with Dementias, and particularly with Lewy Body Other Dementia.

Summary points:

  1. Swallowing Can Be A Killer. Be Vigilant.
  2. Eat When Awake and Alert.
  3. Concentrate on eating. Avoid distractions.
  4. Start with Fluid and Keep Drinking During Meals.
  5. Keep Chin Level, or Down.
  6. Make Food Bite Sized or Pureed.
  7. Be Careful with Bones.
  8. Add Sauce to Keep Food Moist.
  9. Ensure Empty Mouth Before Next Bite.
  10. Finish with Yogurt or Apple Sauce.
  11. Make Smoothies, or Thicken Liquids If Helpful.
  12. Brush After EVERY Meal and Snack.
  13. Stay Up After Eating To Get Food Down.

Read the full story below….Button_Click-to-listen-to-article


Reduce Dementia-related Swallowing Problems
Swallowing Can Be A Killer. Be Vigilant.

Choking is always a risk, even when healthy. However, a slow, silent threat exists which needs to be actively avoided, aspiration: accidentally having food or fluids go into the lungs instead of the stomach.

Aspiration frequently leads to pneumonia by having fluid buildup in the lungs, which is a leading cause of death in the frail.

Dementia with Lewy Bodies affects the autonomic nervous system, which renders simple, otherwise automatic reflexes ineffective. This is why swallowing problems, blood pressure and heart rate fluctuations, incontinence, and sleep disturbances commonly become problems. The “unconscious” mind essentially becomes unable to tell the body what to do.

Although aspiration in Lewy Body Dementia may be inevitable in more advanced stages, there are many things that can be done to avoid it earlier on. Carefully monitoring eating can make a very big difference, and can significantly prolong a good quality of life.

Eat When Awake and Alert.

Reduce Dementia-related Swallowing Problems. Swallow Safely and Avoid Aspiration -- photo/graphicDaytime drowsiness is common with dementia. In addition, with Lewy Body Dementia, attention can fluctuate greatly. That makes it very important to eat when the opportunity arrives, if possible — when alertness is high. This will greatly aid in swallowing and the pace of eating, usually, as well.

Be vigilant that your loved one does not become too tired during the meal. If so, it may be prudent to stop, and leave some food uneaten, rather than risk other complications such as choking on, or aspirating, the food. Deciding on a time limit for eating, in advance, may also help. This will also allow a little time to remain before lying down, and to brush the teeth.

Since sundowning is another common dementia symptom, changing the eating time for the final meal may help as well. If it can be earlier, perhaps late afternoon, challenging behaviours may be less disruptive, and a small snack could be had in the evening if something was needed to accompany later-day medications.

Concentrate on Eating. Avoid Distractions.

There are many things that have helped with choking, and small-particle aspiration. The biggest has been limiting distractions. This means that eating is done in the calmest environment possible, with as little to draw the attention as possible. Limit visual distractions, noise, activity, and even conversation if talking while food is in the mouth is an issue. Concentrating fully on chewing, swallowing and clearing the mouth before the next piece of food goes in is critical.

Start with Fluid. And During Meals Too.

A moistened mouth and throat is needed for smooth swallowing. Having a small drink, or something very moist will usually activate salivation, which will aid in swallowing, and more fluids also aid in keeping hydrated in general as well.

Hydration is critical to overall health as well, lowering the risks of urinary tract infections, balancing electrolyte levels, maintaining proper digestive functioning and more. Active encouragement of fluid intake can make a big difference. Even though the old saying “you can lead a horse to water, but you can’t make it drink” is true, it is usually well worth the effort and frustrations to get the health benefits.

Keep fluid consumption as high as possible during the meal, and choose the drink according to what they like (so they’ll be more willing to drink it) as well as what will benefit the most in terms of caloric content, consistency, and what complements the food being consumed.

Keep Chin Level, or Down.

Looking up can increase the risk of aspiration. When your head is tilted backwards, your chin is tilted upwards, and that opens the air passage in your throat, and slightly constricts the esophagus which increases the likelihood that food or fluids will go down the wrong way.

If you can keep the chin more downwards, that will help. This often means that if there are things your loved one is looking at while eating, they should be at eye level or lower. In addition, if you assist with putting the food in their mouth, do so from a lower position so they aren’t tilting their head back to have the food put in their mouth.

Make Food Bite Sized or Pureed.

Find out what foods are difficult, and analyze other foods before you present them to see if they need to be modified. If you’re finding that chicken breast is posing problems, pork and other meats may as well. Sometimes modification may be as simple as cutting into small pieces, other times it may be pureeing or making juices or smoothies.

Cutting food into small pieces achieves two benefits: it makes it more difficult to put large amounts in the mouth at once, and they require less chewing.

Use small utensils so large volumes of food can’t be put in the mouth as easily or quickly.

Be Careful with Bones.

Be extra careful with anything that can be mistakenly eaten whole, such as a chicken leg where your loved one may not know not to eat the bone as well as the meat. Fish can have hidden bones or fine spines that you might not think of as an issue, but which can create a big problem.

Add Sauce to Keep Moist.

Sauces come in many forms, and they’ll pretty much all help with swallowing. Ketchup, mayonnaise, gravy, bbq sauce, jellies and more can make food more flavourful, fun, and make swallowing easier. Try some new ones to add some variety: as swallowing becomes more difficult, choice often becomes limited, and a new flavour can help.

Ensure Empty Mouth Before Next Bite.

Persons with dementia often will keep putting more food in before the previous bite has been swallowed. “Pocketing” is a common tendency: keeping some food in the cheeks or back of the mouth rather than swallowing fully. Keep an eye on this: even when it doesn’t happen frequently, it can happen spontaneously, especially when tired or temporarily distracted.

If you can encourage them to have a sip of something, that may help clean out the mouth. Also consider getting them to pause, and doing a double-swallowing action to ensure that as much as possible has been swallowed.

Yogurt or Apple Sauce as Dessert.

Having a few spoonfuls of yogurt or apple sauce will help clean out any remaining particles of food, especially if a few minutes pass before consuming it. This is usually relatively easy to swallow, and will also help prevent acid reflux as well.

Make Smoothies, or Thicken Liquids If Helpful.

Thin fluids like water can go too quickly down the throat and into the trachea instead of the esophagus. To avoid this, thicker liquids may help. There are differing consistencies in regularly available drinks. For example, tomato, mango and pulp-in orange juice are all “slower” than apple juice. This is something that differs for every individual, so I won’t go into it further, but there are tasteless gelatine powders which can be added to any “fast” fluid (water, juice, coffee, etc) that makes them “slower”.

An alternative is to make your own juices and smoothies with your own fresh or frozen ingredients. This allows you to make them as thick or thin as is best for the circumstances, and also allows you to very creatively adapt the calories, flavour, and contents of the drinks for your loved one. They may enjoy them so much they will not want to eat regular food.

Brush After Every Meal and Snack.

Clearing the mouth after eating will greatly decrease aspiration risk. If you can have your loved one brush their own teeth, that’s great. If not, you will likely have to help them or do it for them. You don’t need to use toothpaste, or use a bathroom: if you can get the particles cleaned, that is the main thing. Use a basin or bowl to have them spit anything out. If the tips above are followed, there shouldn’t be very much left in the mouth, but it is prudent to get everything out, so that choking and aspiration do not occur afterwards, when at rest.

Stay Up After Eating To Get Food Down.

Don’t go to bed immediately after finishing. Reclining too soon after eating can cause an increase in potential acid reflux (GERD) as well as aspiration. Stay upright for 20 minutes, or for as long as possible afterwards. This will help the food go lower in the digestive tract, which will increase the likelihood it will be processed properly, and that more of the food will be gone from the mouth which will decrease the potential for it to go into the lungs.

barium swallowing test" in an x-ray view
This animation shows an image of a “barium swallowing test” in an x-ray view, with the head tilted sideways.

Our Story

Lewy Body Dementia caused very significant swallowing and choking issues after only a few years into the progression, when many other functions were still working relatively well. We sought the help of different professionals, but it wasn’t until we got a referral from Sunnybrook to the swallowing specialists (Speech Language Pathologists) at Toronto’s Baycrest Health Sciences that we solved many issues. Much of the above information was learned from the exceptional staff at the clinic, and was modified and added to in time. The result has been a diminution of choking, and — I believe — much less frequency of pneumonia, although we have not avoided that completely.

Some swallowing specialists are better than others. If you don’t get a good one, try again. And again.

Be vigilant about how eating is done, analyze your loved one’s swallowing ability, and be ready to adapt and improvise as the condition changes.

Here’s hoping you’ll weather any swallowing storm smoothly.

Strength!
Timothy Hudson.

Updated March 17, 2019



You can listen to the story above by clicking the red “play button” below.

29 thoughts on “Reduce Dementia-related Swallowing Problems. Avoid Aspiration.

  • January 19, 2016 at 9:01 pm
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    Excellent article . Well done and explained very well. Thank you.
    Cookie

    Reply
  • February 3, 2016 at 8:20 pm
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    This isn’t a problem yet….but I have seen some forgetfulness regarding how to eat an odd item that’s not eaten regularly….like an artichoke. And God love him…he swallowed a whole serving cup (1-2 oz) of wasabi mixed with soy sauce…. Oh! I felt so badly for him!

    Reply
    • February 3, 2016 at 11:37 pm
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      Glad that it isn’t a problem — but it warrants being cautious and knowing what may come later, so you can avoid as many problems for as long as possible. But if he survived a full cup of mixed wasabi and soy sauce, he must be VERY resilient already! Strength.

      Reply
  • April 1, 2016 at 1:23 am
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    I think little chokes while eating are what we are experiencing here. So I shall heed the advice of this article and thank you for them and the clarity of your writing.

    Reply
    • April 1, 2016 at 2:03 am
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      Hoping you find a solution, Sylvia! Having a knowledgeable Speech Language Pathologist do a swallowing analysis is great, but — unfortunately — with the commonly occurring Lewy showtiming, your loved one may not exhibit any of their normal problematic issues (while they’re being evaluated by the SLP). The group we dealt with at Baycrest in Toronto was very impressive. CCAC in Ontario can have one come to your home in many cases. Strength!

      Reply
      • September 3, 2016 at 1:50 pm
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        Yes, we had a speech therapist come and do a swallowing session but this was long before any swallowing issues began. I wondered why he was there and he came three times! Anyway we will do our best to folllow the protocol as described here and by our early visit from the therapist.

        Reply
        • September 26, 2016 at 11:11 pm
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          Swallowing is a critical component of nutrition, hydration, happiness, and — unfortunately — can be the cause of pneumonia by aspiration. This can be “silent” where it may be saliva swallowed and which enters the lungs, creating a fluid buildup, which can later lead to infection. It’s not just food that can be the culprit. Constant vigilance is required in so many elements of Lewy life. Strength!

          Reply
  • April 30, 2016 at 5:14 pm
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    This has been a huge issue with my husband. He had always been a fast eater and slowing down has been challenging. Before being diognosed he had already had 3 episodes of aspirating his food and resultant pneumonia. Although since newly diognosed he seems to have slowed down and decreased the aspirations situations by doing quite a few of the suggestions in this article.
    I have to admit, it isn’t always pleasant to eat with him in a group because of the the clearing of his throat, and the regurgitating of his food because he had taken too big of a bite. It causes anxiety for our 14 year old daughter, so she often eat first, then my husband and I will eat after she leaves the table, just to have a conversation with her.
    Thank you for the information..

    Reply
  • February 27, 2018 at 5:55 am
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    My mother is going thru this now, she hasn’t been able to speak for the last year. It’s the worst thing in the world to have to watch, I wish there was some medication or treatment that would allow her to eat and swallow again, she’s beginning to waste away. I can’t really enjoy anything in my life now because I feel like I’m just in the waiting mode. Other than this damn dementia, her heart, lungs and labs are good, but this is what will end her life and it seems so unfair.

    Reply
    • March 2, 2018 at 12:17 am
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      Very sorry, Carl. It is indeed the worst thing in the world to have to witness. And the swallowing issues are so extremely worrisome, with no way to know when there will be an acute crisis, and so unfair when her condition is so good otherwise. There are innumerable cruelties with Lewy Body Dementia, and this is certainly one of the hardest. What you do for your mother makes an incredible, incomparable difference, and you’re making her life the absolute best it possibly can be, under such difficult circumstances. I hope you’ll be able to find the ability to weather the storm. It is unrelenting, but you are strong and have already gotten through unbelievable hardships.
      > Strength to you, superhero! Timothy Hudson

      Reply
    • July 9, 2021 at 2:03 am
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      I went through it with my wife and it was hell to watch her waste away . She was diagnosed October 2015 and went through all the different stages. For the last 2 1/2 years she was bed ridden. On June 9/ 21 she couldn’t swallow her food or drink. She passed away on the 18th. It was the worst day of my life .

      Reply
      • August 27, 2021 at 7:55 pm
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        So very sorry for your loss, Harry. There is no shortage of cruel and inhuman punishment for those living with Lewy. May your horizons brighten, knowing you made the biggest difference possible for her.
        Peace and grace to you. Timothy Hudson

        Reply
  • November 23, 2018 at 3:47 am
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    Thank you for this really important information. My husband has just started choking on food and hopefully we will be able to prevent it from happening due to this article.

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    • November 23, 2018 at 4:32 pm
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      Sorry that your husband is having difficulties with swallowing, Donna. Lewy Body Dementia has so many unwelcome “surprises” and swallowing is one of the worst, since it is easy to miss, and easy to cause great difficulties. I hope you’ll be able to have him get a proper analysis of his swallowing from a speech language pathologist or similar specialist. It’s so important to know how best to proceed.
      > Strength to you! Timothy Hudson

      Reply
  • June 11, 2019 at 12:29 pm
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    I love the stories, but wish you included a print option so I can print and give to my father who is my mother’s caregiver.

    Reply
    • June 11, 2019 at 1:13 pm
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      Hi Theresa: You should be able to just print the article directly from the page: I know it won’t be as nice as a carefully formatted version, but it should work. Alternately, you could select and copy all the text, put it in a new document and print that, which would not have the links on the side. I’m a one-man-army, and am only able to do so much with formatting the site, unfortunately. Glad you found it, and found the articles useful. I hope you can find a way to get the information to your dad — we all need as much help and insight as we can get, and learning from others who’ve gone before is a great way to make things the best they can be.
      Strength to you! Timothy Hudson.

      Reply
    • October 5, 2020 at 6:45 am
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      Hang in there mate. For what its worth I am in the same mode and witnessing the slow motion crash with home care and I totally understand how you feel. Talk about unprepared for this. I had no idea how tough it would be. I’m guessing what we do is amazing but I can’t even think that way.. its changed me forever and I know it but will keep giving 200 % till the very end.
      All the best

      Reply
  • June 28, 2020 at 1:51 pm
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    Hello ,I found all the info ] in layman’s terms and was able to understand, and appreciated other people’s comments. My GM says I have vascular dementia, but my genioligist says I do not cognitive probs. I’m a 70 lady. Without my carers I could not cope. I’m 4yrs in, and failing and I’m scared. I am in Australia, had choking episode, wet myself, the pain — I was past doing anything, so I am so careful, and don’t eat meat. For how things are after a few years, I’m grateful.

    Reply
    • July 1, 2020 at 3:05 pm
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      Sorry for how things are going with your condition, Pamela. That’s a tough situation. I’m very glad you’ve got carers to help you — with us as well, without them, we couldn’t have managed at all. I hope your choking episodes are not repeated, and it’s wise that you’re not eating meat. Having someone nearby when you eat is likely also needed, to ensure that if something happens, they can assist.
      May your journey be the very best it possibly can be. With greetings from the other side of the world, in Canada.
      Strength to you, Timothy Hudson

      Reply
  • December 9, 2020 at 5:38 am
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    This has helped me connect the dots with my mother. Clearly she has not been operating on all four cylinders for several years. For some reason most people don’t seem to realize that she suffers from dementia and take extreme action based on her bizarre stories. Or maybe the whole world is demented. The vitamins can be found in the dryer. Bobcats roam the house, especially at night. She has dates. She falls out of bed most nights. I only recently realized that she has trouble swallowing. Suddenly it occurred to me that this could be part of dementia. Also, she had pneumonia about a month ago, most likely from aspiration. I doubt if I would ever have understood the swallowing problem if I hadn’t read this article. Thank you.

    Reply
    • December 9, 2020 at 3:03 pm
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      That’s a tough situation, Helen. Sorry for the things that are happening with your mother. What you describe do not rule out all other diagnoses, of course. I’d see if she can be assessed by a specialist ASAP for her cognition, and most importantly, by someone to assess her potential for aspiration — a swallowing study may be very illuminating, although from my purely non-medical experience, some results of the studies can vary depending on the variability of the patient’s condition at the time of the study, since LBD comes with so much variation of abilities, seemingly in a huge range from behaviours, to cognition, mood, memory, Parkinsonism, blood pressure, swallowing, digestion, etc.
      It’s a hard road. But I hope you’ll be able to get her some professional medical analysis, even during COVID, that’ll provide her (and you) with the best possible quality of life. This will mean you likely have to do a lot of work on it yourself, but the results will speak for themselves, even though they may be far from what you wish for.
      Strength to you!
      Timothy Hudson

      Reply
  • January 17, 2021 at 9:20 am
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    Hi Timothy Hudson,
    Thank you very much for sharing all these POST from REAL PEOPLE STORIES.
    There are a few that I can relate to.
    My mom was first diagnosed 4 years ago with Alzheimer’s then 3 years ago with Parkinson’s Dementia and now from the middle of 2019 she has been DIAGNOSED WITH LBD (Lewy Body Disease). In 2020, this past year of COVID-19 Pandemic and all of mom changes in mood, eating, vocal, speaking, swallowing, and sleeping it changed my thinking on the quality of life so fast. In a matter of 5 months mom has declined in eating and drinking. The LBD has progressed TREMENDOUSLY.
    Without drinking and eating her organs will start to shut down and take her away.
    These are my WORRIES AND STRESS DAILY.
    The Speech Therapist says not to use a straw and to use only a spoon for her liquids.
    Well the spoon didn’t work for me, so I ham using a straw and monitoring her when she eat and drink she is fed by us.
    If anyone has an idea to share about having her eat and drink please Share.
    Thank You for the FEED BACK.
    Take Care May God Bless and Watch Over All of You Always.
    Please Be Careful and Stay Safe.

    Reply
    • January 17, 2021 at 5:10 pm
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      Sorry for the accelerating worsening of the symptoms, in addition to all the chaos from COVID, Patty. What a hard road. It sounds to me like you’re doing everything with your mom’s very best interests at heart, and contributing to the best quality of life she can enjoy, under the circumstances. I don’t have any suggestions beyond what you’re already trying, since each person is so unique, and in my personal experience, my mother’s abilities changed, seemingly randomly, at different times in the same day, so the approach that worked at one meal might not at the next (or sometimes even later in the same meal).
      I hope you find more methods to keep her well hydrated and able to take in suitable nutrition.
      Strength to you!
      Timothy Hudson

      Reply
  • March 18, 2021 at 12:57 pm
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    Do you know anything about using electrical stimulation to strengthen swallowing ability? Is it something that can be used with a Lewy Body Dementia patient? My concern is that it will only confuse & frighten my husband. He is not able to do any swallowing exercises on his own.

    Reply
    • April 27, 2021 at 3:33 pm
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      I am not familiar with that, Amy. But there are so many incredible advances that this may be something that’s just not yet more broadly available. I would have some questions about whether the swallowing triggering that electrical impulses might initiate would be consistently delivered enough to get the food down all the way needed. If you hear anything more about this, or have a link to info, I’d be very interested to hear more.
      Like you, I share the concern that it might just confuse and frighten a person with dementia.
      Your husband is very blessed to have you on his side with such tenacity and ingenuity, investigating every possibility!
      Strength to you.
      Timothy Hudson

      Reply
  • August 6, 2021 at 1:56 am
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    Thank you for this most helpful article. My mom has been a very good eater, but has started “pocketing” recently. A Google search brought me to this article. Especially helpful was the mention of eating when opportunity presents. In the past 3 meals (1 is Ensure) has been the norm, but it seems things have changed and Mom is not always fully alert, becomes uninterested and “pockets.” I will be more aware of the times she is fully present to make sure we get good meals in then. Thank you so much. ♥

    Reply
    • August 27, 2021 at 8:06 pm
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      Glad you found the info helpful, Julie. My mom pocketed food as well. And her alertness changed drastically with no apparent predictability, so eating was done only when viable. And sometimes, that just didn’t work out well, and so we focussed most on consistency of medication consumption. One can never be sure what is absolutely perfect, but you’re doing everything right in my mind.
      Strength to you! Timothy Hudson

      Reply
  • August 6, 2021 at 2:42 pm
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    This was so very helpful! My husband was recently diagnosed with Parkinsonism and LBD. I can see he struggles to swallow sometimes and has complained about it and also says his throat is sore from time to time (not sure if that is related.) Kudos too all who are the caregiver to someone with this awful condition. One book that as helped me is “Hope for the Caregiver” by Peter Rosenberger. I have the audio and a copy of the book and listen to it often while cycling (cycling is one of my de-stressers which helps me tremendously). Great site! Thank you!

    Reply
    • August 27, 2021 at 7:52 pm
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      Sorry for the troubles with your husbands swallowing and throat, Terri. I hope they can be managed as well as possible.
      Thank you for the book suggestion. It’s great you’re able to benefit from both it, and cycling. Like you, I found bicycling you be a great relief.
      Strength to you. Timothy Hudson

      Reply

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