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Maybe it's something else besides Alzheimer's dementia, I have read GERD causes this also. It only happens when she is eating, without fail. I have told the doctor about it. Doctor thinks it's not a big deal so long as nothing is being aspirated (inhaled). At what point should I be concerned?

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How do you (or the doctor) know whether she is aspirating?

I would get a swallow study by a speech/language pathologist.

Of course, if her dementia is very advanced, you might not want to invest the time and energy in that because she might not be able to follow instructions given to her on how to better managing swallowing.

Have you asked for a hospice evaluation?
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Idunno Mar 2021
No I have not asked for hospice yet. She is rather independent at this point but not sure how she will progress as time goes on. The initial problems began with trouble paying bills and keeping important documents separated from unimportant things. I am still dealing with some of that. To be honest I have had a hard time getting help for her and at this point she is still vocal enough to push back when offered any kind of care. When she had help last year (fracture and therapy) she got tired of the nurses coming to the house. But later she agreed she needs someone to check in on her, if for no other reason than she is lonely and will forget her meds if not reminded or handed them. It should be me as the daughter but so far common concensus is that I keep working until things get worse.
Anyway I had some education with my dad going through similar issues except he would not talk about a problem. So far she does talk and it gets annoying but if she is talking normally I know she is doing good. I may try some thickened food and beverages to see how she handles it. My dad had something like that, I didn't really know he was needing them or much about thickened beverages but now I am thinking this could help her. I will try to ask for a "swallowing test" Will see if I get anywhere. As stated on another comment I have a unique situation.
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Without a swallow evaluation how in the world does this doctor know what is happening. I consider this somewhat questionable to just push off. Swallow deficits are present in many dementias, and is notorious in some like Lewy's. It is also a problem with age. You cannot know what is happening without a swallow evaluation. These are often done by OT as opposed to PT and can be ordered by the doctor, is not invasive. It will eventually, if food is being aspirated into the lung, cause aspiration pneumonia, which is as deadly as other pneumonias. If this is ongoing it should be evaluated.
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Idunno Mar 2021
I did notice it lately and I don't remember when it started. I have a lot to do, but stating it to the doctor might take some preparation on my part. It is a unique situation at best.
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Dysphasia is fairly common among the elderly with dementia. An evaluation is needed.
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cwillie Mar 2021
The word you are looking for is dysphagia - dysphasia is something different (loss of communication skills)
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Has anyone talked to you about modified diets and thickened fluids? There are simple modifications that can be implemented even without having a swallow study done.

https://www.agingcare.com/articles/dysphagia-how-to-help-a-loved-one-eat-and-drink-safely-187010.htm

https://www.agingcare.com/articles/swallowing-disorders-tips-for-using-food-and-beverage-thickeners-208048.htm
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Idunno Mar 2021
No it has not been mentioned. I believe dad had to convert to a thickened diet when he was in Nursing home care. I did not know much about it. She may need to try that.
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I agree a swallow study and evaluation. After my mother’s stroke she had to relearn her swallow and that was a major red flag. My mom got stronger and she did do her swallow studies at outpatient rehab but when we came home with home health they also told me there was a “mobile” swallow study company that would come to the house - so be sure to ask if there is one in your area and maybe you could get them to come right to your house.
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Well doc, once something IS inhaled, then it IS a big deal! Time for a new doc, a swallow study and to know that choking & coughing during a meal IS a big problem and indicates the Alzheimer's has progressed into a new phase. NOW is the time to be concerned b/c any time you hear an elder distressed to this point while eating, you know that there's a problem going on that has to be addressed, regardless of what the doctor says. It blows my mind when I hear about what doctors don't understand with regard to dementia and Alzheimer's, it really does.

Cwillie is spot on with what she's telling you in her post.

Good luck moving forward.
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I know that the ideal is to have a professional evaluation but my mom never had one, and after the grief I went through at the nursing home I think that the family who knows their loved one often can do as well or better than the "professionals" if you are willing to do a little bit of reading. It's not rocket science: foods will be modified from moist and bite sized (level3), to minced (level 2), to pureed (level1), and fluids can be thickened from nectar thick (think tomato juice and smoothies) right on up to pudding thick (needs a spoon).

Very early on my mom began having trouble with water, she choked and had it coming out her nose! The next stage was when she occasionally began to choke on meat, even things like hamburger patties - the food would get stuck partway down and it was scary as heck because although it didn't completely block her airway she could neither cough it up or get it down. For a long time she was fine as long as her meat was ground, her veggies were well cooked and moist and her water was nectar thick, but by the end of her life she did need purees and very thick fluids.
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Not to scare you, but it could be a big deal. She could be aspirating her food or drinks, meaning that they're going into her lungs instead of her stomach. That can lead to aspiration pneumonia and even death. I would take her to have a swallowing test done.

My husband who had vascular dementia, developed aspiration pneumonia, and it almost killed him. He survived, but suffered the consequences of it for the last 22 months of his life. I was told at the time by his Dr that because he had dementia, his brain was no longer telling his throat to close, allowing the food and drink to go into his lungs. I had to at first keep him on pureed foods and later just soft foods until his death.

It's nothing to mess around with, so please take her for the swallowing test. Best wishes.
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Idunno Mar 2021
Thank you. I will try to have her checked. I have a hard time arranging her appointments due to work. That can all change if she takes a turn for the worse.
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If she is coughing and choking the chances are real good that she is inhaling some parts of the food.
I would be concerned on two aspects of this.
1. That she is aspirating some foods
2. The doctor does not seem to realize this.
You could request from the doctor orders for a swallow test OR you can take matters into your own hands as a "trial run" start pureeing her food and begin thickening liquids. You can try a small amount of the thickening product so it is what is called Nectar thick and it will progress from there.
Stop feeding "slippery" foods that have not been pureed. Things like peaches, nectarines, jello, bananas. See if that improves the coughing and choking.
Why wait for her to aspirate something where that can lead to hospitalization, pneumonia and possibly death.
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Ensure your mother is sitting upright when she eats. This will help her to swallow properly. Also, that a hard look at the foods she’s eating.

My mom had no trouble swallowing until one day it stuck in her throat. I gave her a sip to flush the food down but that made it worse and then she had classic symptoms of a heart attack!

I called 911. By the time the EMTs came through the door, she was okay and flirting.

Long story short, by the third time it happened I had done a lot of research and confirmed what to do—actually do nothing except to comfort her until she could swallow. Terrifying. Turns out rice is one food that’s prone to clump. I never made any dish with rice again and ensured her meals had more liquid, like sauces. Thankfully she never had another issue.

Don’t hesitate to contact a doc for an evaluation.
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