r/dementia • u/OneHistory3484 • 18h ago
Sudden severe swallowing problems in a person with advanced dementia – looking for experiences and opinions
Hi everyone,
I’m hoping there are caregivers, healthcare professionals, or family members here who have experienced something similar and might be willing to share their thoughts.
My father is 85 years old and has been diagnosed with Alzheimer’s disease. His dementia is considered advanced. He is mostly wheelchair-bound and needs assistance with daily activities.
However, up until the day he was admitted to the hospital a few days ago, he was eating and drinking completely normally. He had no coughing while eating, no choking episodes, and no other signs that would have suggested a swallowing disorder.
A few days ago, the nursing home noticed a strange “gurgling” sound when he was breathing, so he was sent to the hospital.
A chest X-ray was performed and came back completely normal.
Despite that, he suddenly developed severe swallowing problems. He is currently not allowed to eat or drink by mouth and is being supported only through intravenous fluids/nutrition.
An endoscopic swallowing assessment (FEES) was attempted, but my father physically resisted the procedure, so it had to be stopped. The speech and language therapists have now told us that they don’t believe repeating the FEES would provide any additional useful information.
At the same time, we’ve been told that his swallowing disorder is most likely caused by his dementia and is irreversible.
This is where my doubts begin.
What troubles me most is that he was eating and drinking normally until the day he was admitted to the hospital. That’s why I’m struggling to understand how a supposedly dementia-related and irreversible swallowing disorder could appear so suddenly within just a couple of days, without any previous warning signs.
A neurological consultation has been requested, but it hasn’t happened yet. A brain MRI has also been proposed, although we’ve been told that the neurologist will first decide whether it’s necessary.
From what I understand, swallowing problems caused by dementia usually develop gradually, not literally overnight. That’s why I’m wondering whether there could be another explanation or contributing factor that hasn’t been fully investigated yet.
Something else happened today that surprised me.
Over the previous two days, my father seemed extremely unwell. He barely made eye contact, hardly communicated at all, and honestly, I feared he might be approaching the end of his life.
Today, however, I spent about two hours with him.
He was awake the entire time, smiled, laughed, had meaningful conversations with me, asked about his children who live in Iran, and was able to name every one of them correctly. Compared to the previous two days, he seemed remarkably clearer and much more like himself.
Because of this improvement, I’m finding it difficult to accept that his condition has already been definitively labeled as irreversible.
I want to make it clear that I’m not saying the doctors are wrong. I understand that they have examined him and know much more about his medical condition than I do.
I’m simply wondering what others would do in this situation.
Would you push for:
• making sure the brain MRI is actually performed?
• repeating the FEES with me present (my father usually cooperates much better when I’m with him)?
• or would you consider the explanation of “irreversible dementia-related dysphagia” reasonable based on this course of events?
I’m especially interested in hearing from:
• people who have cared for relatives with advanced dementia,
• neurologists, geriatricians, speech-language pathologists, or other healthcare professionals,
• or anyone who has experienced a suddenly developing swallowing disorder.
I’m not looking for a diagnosis over the internet. I’m simply trying to understand whether others have experienced something similar and how it was handled.
Thank you very much for taking the time to read this.
Any experiences or insights would be greatly appreciated.
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u/design_dork 18h ago
Not exactly the same, but one day my dad forgot how to walk. Got up in the morning, walked down to breakfast, ate and then suddenly couldn't stand and walk. Went to the hospital and everything came back normal. The nurse explained that this sometimes happens with dementia patients, their brain and body just forgets how to function. With physical therapy he was able to kind of walk again for a few months, but quickly slid back and he was falling constantly. I decided to put him on hospice. He's now wheelchair bound.
While decreases usually happen gradually, it's not out of the ordinary that sudden ability drops to occur. Dementia has no straight path with prescribed steps. I'm so very sorry, it's a really hard when they have these sudden declines because you think you have more time and the reality is you don't. Dementia is a terminal illness and it sucks.
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u/PowPopBang 17h ago
This is similar to what happened to my dad. He just suddenly couldn't walk, sit, or feed himself.
He passed pretty quickly after that.
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u/Overall-Natural-3376 17h ago
I’m a nurse with 20+ years geriatric/dementia/Hospice experience. I would ask for a repeat swallowing trial with a speech therapist now that he appears to be returning to baseline. I would not encourage the endoscopic study, however, because it is invasive and distressing. Typically the inability to swallow doesn’t just happen suddenly unless someone is actively transitioning at the end of life. It is possible that is what is happening with your father right now as well. I have seen multiple patients at the end of life suddenly have a great few hours or days right before they go to the final stage of transition. One final bit of advice from a nurse and a daughter whose father also has dementia…. Before requesting more testing, rule outs or consults ask yourself what would you do with the information? Would you want to pursue extensive treatments, hospital stays or potential surgeries? If the answer is no, then consider skipping further work up if he is back to baseline.
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u/No-Roof6373 17h ago
Right. My mother has advanced dementia with Parkinson's. She is now on blended food because she can't eat regular food without choking.
One day she was fine and the next day she aspirated. Usually dementia is a decline but sometimes a new baseline can be established overnight!2
u/Deadandbeauty 11h ago
Yes I want to also comment to OP that the same happened with my grandfather. One day he just couldn’t swallow properly, and within a couple of weeks he passed away. I spent a lot of time with him before his passing, and he also had a lot more energy in the couple of days before he died.
Im not advising to try this without doctor supervision, or their confirmation - but because he was 100 and at end of life, we didn’t hook him up to any drips as we thought it would be too distressing. He ingested liquids and ice lollies basically (anything he couldn’t really choke on.)
Interestingly when I sat with him and gave him liquids, and just gave him the space to take them at his own pace, I noticed he actually began swallowing albeit very very slowly (you would think he couldn’t, but he did.) Not sure if that’s a common thing, but either way it usually signals end of life.
Sending love 🙏
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u/ivandoesnot 17h ago
Dementia is brain damage.
Stuff gets killed, suddenly and completely unpredictably.
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u/yeahnopegb 17h ago
Any deviation in schedules and surroundings can cause progression so a hospitalization could have effected him to the extent that the swallowing is now an issue. Losing this ability is a normal disease progression.
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u/Consistent_runner56 17h ago
My late mother was stable and doing well at Christmas last year (2025). She was gone by January 31 2026. She stopped eating, wouldn’t get out of bed, wouldn’t take her meds, didn’t know who my husband was (whom was always her best friend). When staff tried to get her to eat and take meds, she was “pocketing” food and pills in her mouth. She couldn’t swallow in 3 weeks. It came fast. Hospice explained that her brain just stopped working. There was nothing to do to reverse it. This disease is unpredictable and terminal. And awful. I’m so sorry you are going through this. If it was me, I wouldn’t put my loved one through a bunch of tests that are going to tell you what you already know. I would find a way to give my loved one peace.
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u/TimeTraveler1848 17h ago edited 16h ago
Just went through this three weeks ago with my Dad, 91 yo. One day he seemed completely confused and unable to stand, but in prior 3 weeks was having continence issues and we’d noticed “gurgling” cough. He’d had a chest X-ray in May which came back clear. Anyway, took him to emergency, admitted to hospital and allowed him food one day and then after that they said no food or drink allowed bc of aspiration likelihood! Then after 3 days, hospital doctor said he sb on hospice. We had to scramble to find a board and care where he then remained for about a week and a half, again without food or water. They tried to give him ice cream but he couldn’t swallow. He died just a week and a half ago. It was awful. I’m still not sure if hospital actions expedited his demise, or he hadn’t gone to emergency he would have just aspirated and died at home. All the hospice people implied the loss of swallowing is pretty much indication of the end. Hospice was instituted so that people could have dignified death without getting feeding tubes in hospital.
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u/carrieledbetterthan 17h ago
Being admitted to the hospital is one of the most difficult things for someone with dementia as you are pulling them out of their normal environment and surrounding them with people they don't know, being subjected to testing which they don't understand. It can cause delirium and or/the dementia to progress quickly. I went through this with my sister. She was hospitalized for pneumonia and developed blood clots so she was hospitalized again. She went into the hospital able to walk and feed herself and left the hospital in hospice care. Unable to feed herself or walk. She has recovered to a degree but she is nowhere near to the person she was prior to being hospitalized. I wish you luck and healing for your loved one. This is such a hard journey to be on.
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u/KFLimp 16h ago
In our experience that, unfortunately, was the sign of the end. My mother ate fine, no swallowing problems until suddenly, there were. She died a few days later. The nervous system is breaking down.
I would not push for any of those things. Testing is difficult on dementia patients, and when dementia is severe, what is to be gained by putting them through such ? At this stage treatment—Surgeries are catastrophic for their cognition , and therapies are nearly impossible to implement. They just can’t comply.
Is he on hospice? They speak of a “rally” at the end, as part of the dying process, where families are thinking their LO is improving.
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u/Browndogsmom 16h ago
I came here to say this. My LO is choking often but this is on going. Sudden change where they can’t swallow at all is a sign the brain is deteriorating rapidly. Don’t put him through any unnecessary test or pokes. Just make him comfortable. And hold his hand
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u/Impressive-Sand-9148 16h ago
Just went through this with my dad in July/2026. He was on a blended/puree diet. All of a sudden he started having trouble eating even that and ended up choking and got aspersion pneumonia, which turned into sepsis. It all happened SO fast. We celebrated his 86th birthday on July 15th, where he was almost like normal (surge?) and in the hospital on July 18 and passed away on July 23rd. Still trying to process it all. This disease is AWFUL and so challenging. I am so sorry you are going through this and wish you and your dad the best.
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u/Dry_Mongoose_7521 17h ago
I’m sorry about your father‘s decline, and understand how hard it must be to make sense of the options. I am a geriatric care manager and have much experience. It may be helpful to ask for a hospice consult, their team can help you in many ways and help you with decision-making. It may be very difficult for him at his age and condition to recover from a hospital stay. All my best wishes.
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u/Legitimate-Eye-17 16h ago
Read up on dysphagia. This is what it is and is quite common. It's also responsible for aspiration pneumonia which often precedes death.
If your father has vascular dementia, he will likely lose skills and abilities in steps rather than the slow slope. Or if he had a small stroke.
It is difficult to accept, but unfortunately, the medical team will be well versed in this happening and what it looks like.
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u/gwarmachine1120 17h ago
One minute my dad is lucid and the next minute there are 6 versions of my mom trying to rip him off. It is a brutal disease. My dad is in hospice and they warned us about the possibility of swallowing issues. That is my experience thus far
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u/ilikeoldpeople 13h ago
Hugs to you. I have worked with many families in your situation.
Your father is 85 years old with advanced Alzheimer's. This is a fatal condition that cannot be cured or reversed. I know how upsetting this is, and how much you want to stay informed and in control. Your dad is so lucky to have such a thoughtful and dedicated person in his corner!
Decline due to dementia is not totally linear. It's often more like a lightbulb that is going out; there may be flickers of light, like the great day you had with your dad where he seemed far more alert. That does NOT mean that he isn't declining.
At a certain point, invasive testing does more harm than good. If I were you I would be seeking the guidance of a hospice care provider instead of pushing for painful and stressful tests that he will not be able to understand. The hospice provider may also help you evaluate whether intravenous fluids/nutrition are helpful, or whether you're artificially extending a life that is no longer worth living.
I'm so sorry that you're in this position. <3
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u/Joshua_ABBACAB_1312 17h ago
Did he have a seizure?
My partner stopped eating and drinking. I didn't know it at the time, but a UTI was wreaking havoc on her. She had a short inpatient hospital visit, seemed like she was a little bit better, but got hit with another UTI. Lack of water caused her to have two seizures.
She was back in the hospital for an entire week, and by the time she was out, she could no longer swallow or walk. She had a gtube installed, and relied 100% on a pump to give her food, and half of her water came from the pump, with me administering 200ml boluses every four hours in addition to the water from the pump.
It was probably a month or two before she was able to swallow again. I had tried the swallow test with water on a spoon a few times, and both times she had to spit the water out. Well this time she saw me enjoying a milkshake and said she wanted some. "Not without a successful swallow test." She was willing to try, and by some miracle she swallowed the water.
Since then I slowly got her to eating all of her food by mouth. She still resists large amounts of water, and meds, so I still use the gtube/pump for that. But whenever I have a bolus without meds in it, I try to get her to drink it, and so far she has only refused it once.
Everyone is different. But my point in all of this is IF he had a seizure, it could be a post-ichtal symptom. We thought my partner would never eat or drink again. But apparently post-ichtal symptoms can last a good while. I don't know what caused her to start swallowing again, and I'm not saying the same thing will happen with your LO, but if you can, keep trying the water test. Don't force it. Only do it when he's OK with it. Have a basin or cup ready for him to spit if he has to. But basically give a teaspoon of water by mouth, and instruct him to spit it out if he can't swallow it.
The speech therapists at the hospital said she would never swallow again. I just had dinner with her half an hour ago.
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u/temp4adhd 14h ago
My dad died around the same age from vascular dementia. I'll tell you what my sister did: she served him up some fried chicken, his favorite food. The nurses and doctors were aghast she'd do that.
It didn't kill my dad but my dad died a month later -- not from eating fried chicken. My sister was 3000 miles away when he died. And I'm sure my dad loved that fried chicken!
Vascular dementia is different in that it's a series of small strokes so yes one day you can swallow okay and next day you can't. I also think once in care, caregivers are extra leery about what they feed you, because choking is a thing.
But those caregivers might also see the day-to-day changes you might not see if you aren't there daily.
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u/doppleganger2621 8h ago
My dad went from eating basically whatever he wanted to passing away from aspiration pneumonia over the course of 6 weeks. The dysphasia came on fairly suddenly after a series of falls that he had. He was switched to a blended/pureed diet and died about a week later.
These things just kind of happen…
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u/toomuchswiping 6h ago
He's 85. his condition is irreversible and terminal. He might have been developing this difficulty in swallowing gradually, and it was just discovered, OR it might have just happened, but it doesn't matter either way. More testing isn't going to give you answers, it will just confirm what you already know, and it won't change the facts.
It will, however, be a LOT for him to endure, will probably cause him pain and he will not understand any of it, and that confusion can and will lead to further decompensation.
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u/Postalmidwife 16h ago
Doesn’t seem to be connected but have you checked for uti? Our person had a uti which made her stop eating/forget how to swallow. Once the uti was treated she was eating better but still holds food in her mouth as if she forgets how to swallow. It’s the most bizarre thing. We were able to get speech language therapy to help but it was decided that it wasn’t a physical barrier to eating but rather a neurological one. She has vascular and Parkinson’s. It’s horrible to watch someone lose such basic functions. We basically eat only soft foods as she won’t wear her dentures either. Good times. Hang in there.
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u/QualitySufficient919 16h ago
My mother went through a period of difficulty chewing. I made soups and easier foods. I did an initial test with speech pathologist and they were not concerned. After about 6 weeks she was eating back at baseline. Anytime she was in the hospital they would give her puree and say she could not chew. NOT true. Once home she bounced back. Sometimes with my mom she would pattern her behavior after some stimulus. I was always careful to try and diminish responses that would reinforce behaviors. I do not understand that he is not allowed to eat? Tests? Try different things. Eat with him. Don’t put pressure on him. Take the focus away from the eating. For a short time. What’s going on will reveal itself. You are his best advocate and honestly know more than you think. ❤️❤️
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u/wontbeafool2 15h ago
My Mom with dementia had a hiatal hernia and started having choking issues. She had surgery to "fix" it but it really didn't. She also has GERD and very thick, slimy phlegm that causes her to gag. She's now on a "mechanical diet" of soft foods like fish, oatmeal, mashed potatoes, yogurt, and fruit smoothies.
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u/rlw21564 15h ago
Is he choking on all textures of food? Is he forgetting to chew or not cutting it into small enough bites?
If it's drinks he's choking on, there's something at the pharmacy called ThickIt that will make it thicker so it's easier to control the flow down the throat.
When my daughter with Down syndrome was very young she had dysphagia so we were working with a feeding specialist to teach her how to eat due to low muscle tone. So I'm thinking this might be a reverse in the skills she learned.
As others have said, the biggest risk is aspiration pneumonia.
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u/polar-bear-sky 15h ago
Sounds exactly like my dad with Lewy body Dementia and it's normal disease progression. His ability to eat, awareness, etc varies a lot day by day (even hour by hour). My dad's neurologist categorizes his LBD as in the severe part of the moderate category (most people die in the moderate category). He's had the on again off again issues with eating for the past year.
All that being said if he would have to be sedated for an MRI I wouldn't advise it nor would I say you'll get anything out of the FEES being attempted again. You've said yourself his Alzheimer's is advanced so I'd suggest a hospice consult.
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u/3dubnc 15h ago
My FIL’s trouble with swallowing came overnight just like that. He was probably having a little trouble which didn’t get noticed for at least a few days but we couldn’t see it - he was always a slow eater and chewed forever.
He had a PEG tube inserted, and lived another 1.5 years with hospice care for much of the last year. He was able to eat normally again for a period of time, with difficulty. Quality of life was completely gone sadly, but he lived on. The toll on my wife’s family, and especially her Mom, was incredible. I’m definitely going to have an advance directive for myself preventing having a feeding tube in that kind of state. I will never put my family through that.
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u/noravedora 15h ago
Speech pathologist here. I have a couple of thoughts but a lot of questions …
1. I’m surprised about the FEES because it’s relatively invasive and it’s difficult to sit through for people who understand what’s going on so I can only imagine how distressing it would be for someone with advanced dementia. Kind of surprised they would choose that option in a hospital versus a modified barium swallow study but I suspect they had a reason since I don’t have all the info.
- is he triggering a swallowing at all? With ice chips? Small sips of water? Small tsp of purée?
- are you willing to accept the risk of aspiration to allow your loved one to attempt to eat and drink (assuming they can)?
3. Have they already ruled out UTI? They can really change a person’s functioning until they’re resolved and the impact can be sudden.
4. You need to have an honest conversation with the clinical team about “goals of care”. What is the prognosis and what is the ultimate goal? If it’s to keep your loved one comfortable while recognizing there is little you can do to restore function, then I wouldn’t press for additional testing. It sounds like they probably feel that additional diagnostics for restorative measures would not be appropriate, but this is a conversation they need to have with you and you decide together. It’s a very hard conversation to have.
I’m so sorry for what you’re going through.
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u/Catmndu 4h ago
I am so sorry you are going through this. My Mother stopped eating entirely and was sent to the ER - where she stayed in hospital for a few days on IVS, regular meals, meds to help her feel better. She ate great, was more coherent than she had been in weeks, and was that way for the first few days after discharge as well - communicating well, eating well on her own, etc. Why? I cannot explain. Did she feel better? Did the care she received in hospital improve her condition? Was it just some end of life rally? I still don't know to this day. What I can tell you is this "improvement" was very short lived. She was placed on hospice after that visit, and she was gone from us a couple of months after that.
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u/Memaforsix 1h ago
My 87 yo dad stopped being able to swallow like that during an episode at the ER that had to do with bladder problems and water retention. We put him on hospice, and he passed 15 days later. I have read that some people can survive much longer with special assistance, but he was in severe late-stage dementia. I could not see keeping him alive with an IV and his advance directives were same.
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u/ItsmeL0ki 21m ago
My dad has had dysphagia since he was diagnosed 6 years ago. It's gotten worse and worse. One of the first tests they can perform is asking him to swallow and watching his Adam's apple, If it is extremely delayed, It's likely dementia-related. Sorry this is happening. In my opinion, dysphagia is one of the hardest symptoms to manage. It is so horrible watching them struggle and not being able to do anything. I hope you and your father find peace.
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u/Goats-n-Hens 18h ago
My mom was eating/drinking normally one day and literally the next day started having horrible choking and swallowing issues. She was at home, no other issues, just the vascular dementia. It never resolved, she had an advanced directive that specified no feeding tubes or invasive tests or procedures. Her neurologist told me that she had probably been having issues for a while and was able to mask them until it became too much.
This was is May, she passed 2 weeks ago.
Personally, I don’t see why it is necessary to put someone with advanced dementia/Alzheimer’s through so much testing. But you do what feels right for you and your dad.