Experience with swallow issues needed. Do you always supervise a person with dysphagia?

I’d ask the speech therapist. They dictate care pertaining to dysphasia.

Since he has dementia, I’d be present whenever he is eating. To help him remember to take small bites, chew thoroughly and consume everything in that bite before taking the next bite.

Drinking. We like SimplyThick. It comes in a plastic bottle with a pump. Very easy to use. We also use Nosey Cups and Reflo Cups. Research shows if the person drinks with their chin down, that posturec is as effective as using a thickener. The passageway to the lungs is shut off. We typically give Dad fluids using a Nosey Cup, 1 shot of thickener, and a straw. We add ice to the drink to make it more appealing. I don’t thicken his coffee except with honey. And I only put 1 pump of thickener per 12 ounces of fluid instead of 2 or more pumps.

As a former rehab nurse, I remembered a tip given by a speech therapist and mentioned by one poster here.
Best position for safe swallowing is to sit up very straight, head squarely on shoulders, then tuck chin inward as if pointing it toward the chest. This position directs food into stomach, not the airway.
Try it yourself! You can feel that it gives food a straighter path to the stomach.

He must be doing better if you are allowed to take him out to eat. Choking is the main thing to avoid. Try to serve small bites of solid foods or thick liquids like creamed soups, milkshakes, applesauce. See that he doesn’t take large bites If he insists on thin liqids, add commercial thickener like “Thick-it “ (speech therapist should have). See that he doesn’t eat too fast or pocket food in his mouth.
Also let ST show you what to do if he should begin to choke.
He is taking a great step forward.
CONGRATULATE him!

I would not ever just put food in front of him and expect him to eat or drink safely. If you haven't discovered it already, there is some stuff called Thickit that can be added to liquids (soup, etc) that might catch you unawares. But, of course, one has to be careful about what he is offered to eat, that is, if meat, it must be cut up in very small pieces that can be swallowed easily, and things like toast must similarly be easily swallowed portions.

The most iportant thing about your letter is: DON'T LET ANYONE GUILT YOU ABOUT ANYTHING. Do the best you can. Be as well informed as you can be. If someone tries to guilt, you; hand them the keys and let them take over.

MickiLyn: Ask for further clarification on "general supervision" from his specialist.

Basically, a competent adult needs to be with him whenever he eats. This person will make sure he is sitting fully upright, tucks his chin towards his chest, takes small enough bites or sips, swallows fully, and does not "pocket" food or medications under tongue or into a cheek. This person should know how to perform the Heimlich maneuver and to call 911 if the loved one appears to be choking. It would also be beneficial to know exactly what consistency of food and fluids the loved one can swallow and to "thicken" anything that is too "thin" and make sure food is appropriate bite sizes.

This is something to absolutely, positively have professional(Dr./Therapist) advice on, if you're considering anything but 100 percent supervision of eating

Ask the Drs or therapists for clarification. It’s fine to post here and get opinions, however you need to follow the professionals advice. Please call the Drs and/or therapists and ask them about the amount of freedom vs supervision.

When he is eating or drinking someone needs to be there. Not only is aspiration an issue but also choking. Constant reminders of what he needs to do while he is eating and drinking… shouldn’t do that alone

You state the dilemma of caring for someone with dementia. We want them to have the best quality of life possible, and as much independence as possible, yet they need help to stay safe and to care for themselves. When people have dementia, you have to monitor their state constantly, as it will change over time. Please don't feel guilty if you don't get it exactly right. It's a balancing act. Get connected with caregiving networks and a local social worker who can help you understand what resources are available for you as caregivers and the person you are caring for, and learn as much as you can about the stages of dementia. Some medical insurance policies provide access to consult with nurses. My mother went through eating stages as her dementia progressed. She "forgot" her table manners and became like a child when we took her to restaurants, playing with her food and the utensils, sugar packets, etc. She was in a memory care facility at this time, so we could learn from the professional staff. When she began "pocketing" her food in her cheeks, she was given only soft foods. Then she "forgot" how to feed herself and had to be fed, like an infant. Some people can only swallow thickened liquids. Adjustments had to be made at each stage. We had to keep monitoring her state and what she could do. At some point, it doesn't help to try to instruct people with dementia or get them to change. They are not capable of remembering instructions. They are doing the best they can. Sadly, the condition of people with dementia is likely to decline. Have a Plan B, in case you are no longer capable of providing the necessary care.

If it were me, I would meet with his therapist and ask for further explanation of what "general supervision" exactly means for his individual case. If you have not already, sit in on a therapy and if allowed, be there whenever a FEES or Barium Swallow test is done. I have been at several and it is very enlightening. Take Speechie130 comments to heart and see the comments I made to Evamar. I also have had comments that I am being overprotective then comments that I am not doing enough and try to let it all roll off my back while trying to keep making the best decision I can in the moment in effort to keep a balance. Most people, even professionals, are basing that judgement on one very short period of time they are with both of you. Family can be the worst at second guessing your care. Without professional training, we can only do the best we can with the experience we have and unfortunately experience comes from good and bad decisions. Care giving is a super hard balancing act and you obviously have already made some very good decisions.

A person with dementia who can't communicate and is unable to swallow, has a grim survival prognosis. It will be impossible to improve his quality of life. To begin with, he isn't even aware of what is going on with him. Just do the basic supervision of not leaving him alone at meal time, but forget about rehabilitating him. He's probably too far gone. His dysphagia and aphasia are most likely the result of cerebral infarcts and the damage is irreparable.

Hi, I am a Speech-Language Pathologist and have worked with many people with Dysphagia due to everything from dementia, stroke, TBI, Parkinson’s, and ALS, to laryngeal or oral cancer. Swallowing is one of the most complex process in our body involving 5 cranial nerves and 26 pairs of muscles. There are several distinct phases to the swallow and any or all of the phases can be impaired. This is why it is so important to work with a speech therapist that specializes in swallowing. My advice would be to seek out a swallowing center or board certified specialist in swallowing for a full assessment. Often the assessments done in the hospital are cursory or no longer accurate once the patient goes to the next level of care as improvement in their status can result in a change in the swallow. Just remember, a swallow study captures that specific moment in time.

There are many evidenced-based swallowing therapies that can be very effective to rehabilitate disordered swallowing even for those that are severely impaired. Not all can be rehabilitated, but many more than was previously thought possible. As to your question, typically a person with dementia can be impulsive (taking bites that are two big, gulping food/beverages) and/or can have prolonged chewing to the extent that they forget to swallow or have food that remains in the mouth under the tongue, between teeth and cheeks, roof of mouth, etc. so they need someone to periodically check that they are clearing the food from the mouth. These tendencies increase the risk for choking hence the need for supervision. Adherence to the texture and consistency of food/drink is important.

As previously stated, I recommend that you seek out a swallowing specialist for a full evaluation and to discuss possible upgrade to the diet recommendations. I know of many cases where people are discharged from the hospital, especially to a skilled nursing facility, and their swallow is never re-evaluated so they are stuck on a restricted diet or feeding tube. Many times there can be improvement and people can be moved from a feeding tube or severely restricted diet to a normal diet. Not all skilled nursing facilities have the equipment to perform the appropriate swallowing evaluation. Some contract with outside mobile swallowing diagnostic companies that come to the facility. The two gold standard tests are Fiberoptic Endoscopic Evaluation of Swallow (FEES) and the other is the Modified Barium Swallow Study (MBSS) also known as Video Fluoroscopic Swallow Study (VFSS). The MBSS/VFSS is usually done only in hospital radiology departments or at some specialty swallowing centers. FEES can be done at the bedside or in an medical office. Keep in mind these are not pass/fail tests. They tell us where the swallowing is impaired, if penetration or aspiration is occurring, what type of food/liquid textures and consistencies are appropriate, what compensatory strategies may be effective and helps us to determine appropriate therapy approaches to rehabilitate the swallow. One last suggestion, request the speech therapy medical records where your family member received treatment. You should be able to see the swallow evaluation reports and all the therapy sessions as well as the final progress report with detailed recommendations. Hope all this information is helpful to you and others reading this post.

I've had 2 separate experiences with dysphagia.  The first was during a complicated near death experience in acute care hospitals, long term care hospitals and one rehab center, over a period 7 months, in addition to 3 months at home on total liquid only diet (with a PEG tube).   This is probably beyond the stage of your loved one now, but I'm sharing it so you can be alert as life proceeds, and the dysphagia hopefully doesn't become more complicated.

There used to be 3 or 4 dysphagia levels which dictated the diet, such as whether anything could be consumed without being pureed.   It doesn't sound as if your LO has reached that point yet, but it's something to watch for.

In my experience a speech pathologist administers a swallow test.   Small bits of food and liquid are given to the patient to swallow, and the path is shown through a videoscope, kind of like a camera into the throat showing the path of food or liquid.  This enables the pathologist to determine if "frank aspiration" (into the lungs) is occurring.    It also determines the level of dysphagia, and accompanying food alteration.

Given your concern for safe swallowing, I think it would be very wise to accompany him while eating, even just having a snack to use as an excuse to be with him and observe his swallowing.  Meats in my experience can cause this even when the dysphagia isn't advanced.

You might also ask the speech pathologist for a list of different stages of dysphagia and the accompanying foods allowed or prohibited.  Ask as well about liquids, as they're easy to aspirate, and in my father's case, needed to be thickened with a powder to be safer when drinking.

FunkyGrandma offers some interesting insight, in that her husband had some dementia as well as dysphagia.    That could really complicate the situation.    My father didn't have dementia, and was told by the SLP that swallowing muscles just wear down and don't function as properly as a person ages.

My father didn't have dementia; his first bout with dysphagia was due to a massive physical breakdown and long hospitalization after my sister died of cancer 16 months after my mother died unexpectedly.  Dad threw himself into his work, building a workshop, and overworking long hours and not eating properly.

His first bout with dysphagia was 15 years before his death; the second began 3 (+/-) years before his death, at 99.5 years old.  

I would:

1.    Ask the SLP for lists of dysphasia levels and appropriate foods, so that you can monitor and watch out for signs of acceleration if he begins to choke on foods that he previously could eat.

2.    Yes, please do monitor him, but in a conversational way, as he likely will take longer to eat, and conversation by you to accompany him can minimize some of the tedium of careful eating procedures.

A.    This is a general description of dysphagia and its various aspects:

Dysphagia Diet | Saint Luke's Health System (saintlukeskc.org)

B.     Another slightly different pyramid with descriptions of various levels:

Eating with Dysphagia | Nestlé Health Science (nestlehealthscience.co.uk)

C.     A good video demonstrating proper and safe feeding (if/when someone reaches the point of needing assistance):
given:  

Eating with Dysphagia | Nestlé Health Science (nestlehealthscience.co.uk)


I also bought a small blender to blend meats with gravy so my father could still eat the meats he enjoyed.  That blender got a lot of use!!  This was my faithful companion during those challenging periods:

Kitchenaid 3.5 Cup Mini Food Processor - Kfc3516 - Ice Blue : Target

Good luck! You're wise to address this now in a proactive manner so that he can be safer as he progresses on his life's journey.

Dealing with PD and symptoms such as dysphagia is difficult. I cannot tell you how it will progress or how fast.
For my husband seems to be fast, there are several types of dysphagia, people with Parkinson develop one that has to do with throat nerves, I am not familiar with dementia.
There is no cure, apparently botox injections can help to make those muscles less constricted. I know of one fairly young guy (49 )his Parkinson progressed to the point he almost cannot eat anymore. Next, it will be feeding tube.
If that happens to my husband I know he will not allow any of it and will basically die of starvation. I hope not!
I don’t know about supervision, just assuming person with dysphagia should not be left alone when eating, choking can occur with sip of water, you have no control where food or drink will go, but you could do Heimlich's maneuver, or call 911.
I am sorry if I paint a gloomy picture but realistic one.

It sounds like he needs to be kept on a pureed diet or at least just soft foods and thickened drinks(with Thick It)for the rest of his life, as he is very high risk for aspiration pneumonia and next time may not be so lucky.
My husband(who had vascular dementia)developed aspiration pneumonia in Nov. 2018, and almost died. His neurologist told me that because of my husbands dementia, his brain was no longer telling his throat to close when he ate, thus allowing the food and drink to go into his lungs. He did survive, put developed sepsis and septic shock, and came home completely bedridden, for the last 22 months of his life.
I had to pureed all of his foods for many months and thicken all his drinks, until he eventually was able to move into soft foods. However he still had his drinks thickened.
Vascular dementia is the most aggressive dementias of them all, with a life expectancy of only 5 years, so I would recommend that you only allow him to eat either pureed or at the very most soft foods, as to not take a chance of him developing aspiration pneumonia again.
And I will tell you that once I had my husband sitting up properly in the hospital bed and knew that his food was either pureed or soft, and his drink was thickened, I did not stand over him like a hawk to watch him. I let him eat in peace, although I was always in the house when he ate.

4 hospitalizations in a year that are likely or clearly related to dysphagia and lead to infection are, to me, a clear indicator that he benefits from the current daily routines and 'level of freedom.' Someone needs to be in the room with him when he is eating - able to gently refocus him on the behaviors that the SLP recommended and that seem to work very well for him.
Very often frail elders do develop an infection that leads to end of life. Can't be prevented even with careful feeding by trained aide. When that happens, time for hospice so that the worries about inadequate care (for you and facility) are resolved and he can have a more peaceful passing.
I wonder if those who are pushing for him to have 'more freedom' are not regular visitors, not involved in hospital decision making, and want to take him out for a meal without all the work involved in cuing for safe swallowing. Or think it doesn't matter.
Everyone gets an opinion...and if they keep trying to change your mind, it is ok to politely remind them that you know their thoughts, have carefully considered them in addition to medical recommendations, and your dad's goals of care - and that the current arrangement is best for his well being. End of conversation.
Good luck.

TChamp your constant counsels of despair are sometimes really too much to overlook.

Swallowing impairment can arise for all sorts of reasons, not all of them irreversible. The gentleman in question has been examined in person by a specialist qualified and equipped to form a considered judgement of his ability to eat. I hope the OP will prefer to rely on the professional's opinion.

He is alive by a miracle. Another miracle will be needed to prevent him from dying after a swallowing accident. He's a high risk patient and realistically speaking, keeping him alive is going to be a daily challenge. Quality if life? you must be kidding.

Yes, a person who understands dysphagia, positioning when eating, whether or not liquids need thickening, and Heimlich's manuver and general CPR should be available in room when this person is eating or drinking.

If a qualified speech and language therapist has determined that your loved one needs general supervision, then he shouldn't be left alone to eat but other than that no special restrictions - though obviously you won't and he probably won't either want to tackle anything that's going to be a challenge to swallow. You don't have to stand over him and monitor every chew, and if he needed a modified diet or thickened fluids the report would have said so; just make sure someone is at hand in case of difficulties.

If you're not 100% confident about what is and isn't allowed, contact the therapist and ask for more detailed guidance. SALTs are usually pretty cautious, though, and his therapist will have listened to his reflex with a stethoscope to hear exactly what is going on with the synchronization, so this sounds promising. Well done him!