With an aphasia/dysphagia diagnosis in Vascular/Alzheimer's patient does anyone know what "general supervision" means for eating advisement? Does that mean he needs at least basic monitoring when he eats so not eating all alone? That is what we interpret, but are we wrong?
His placement in memory care was after 4 hospitalizations in just over a year, and all were pretty serious. The final was for aspiration pneumonia, and he almost died in the ICU. He is doing VERY well now in Memory care with a GOOD DIET, meds regulated and a general routine. He's doing so good we keep discussing more freedom. He is now being allowed to go out to eat with family that take responsibility and he is allowed most textures but needs small bites and reminders to chew well. We want him to have freedoms, but we also need to keep it safe too, that gets complicated because historically without the good diet and routine he did not do well at all so eating alone seems risky.
The final speech therapy report was that he needed "general supervision." We just are wondering if anyone has a better or more exact take on what "general supervision" for eating would mean for safety sake. I know it sounds self-explanatory but we keep kind of getting thrown the guilt trip that we aren't letting him do enough all on his own alone, and that is super frustrating because when he was in hospital we were guilted we were not doing enough to keep him safe. Finding balance for quality of life vs. safety is just super hard. My understanding is the Aphasia/dysphasia will continue to progress too.
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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.
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.
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Also let ST show you what to do if he should begin to choke.
He is taking a great step forward.
CONGRATULATE him!
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.
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.
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.
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.
Before allowing your husband to simply say no to a feeding tube, get more information so you make the best decision for both of you. My husband, with PD, has had a feeding tube for six years now... which he was also reluctant but a family discussion nudged him to give it a try. He began with eating nothing by mouth at first then we found a very qualified swallowing therapist. Now I only use it for his meds and once daily because I am not confident in providing adequate nutrition with just foods I prepare. Occasionally he even enjoys cheese pizza per instructions from his therapist, which was the one food he missed the most. He was onset at age 40 and is now 74. Choosing the best therapist available near you can go a long way to preventing or at least postponing needing a feeding tube... I wish I had known that. It sounds like MickiLyn has found a good placement... we go to a NH for outpatient therapy. Feel free to message me privately if you would like more encouragement and support. Be sure to read Speechie130 comments.
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.
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.
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.
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!