Dad lost his swallow ability, then suddenly regained it back. What's going on?

6 answers | Last updated: Oct 13, 2016
Desireen asked...

My dad has frontal temporal lobe dementia. About 5 days ago he "lost his ability to swallow". The doctors did a barium test and he aspirated and got pneumonia. He was in ICU for maybe 2 days, then they sent him to hospice. We asked for a 2nd swallow test to be sure but the doctor said no...that he was at the end of his illness and it would do no good. Today, the nurses decided to try a bit of juice which he indeed swallowed. They next tried food. He ate a large amount of soft foods such as mac and cheese, green beans, a fruit cup, and tapioca pudding. What do we make of that? Was the swallow test wrong? Is he able to swallow again? Does the ability to swallow go in and out in the final stage of dementia before it sets in permanently? Another nurse is saying that it probably all went down the wrong tube into his lungs. However, wouldn't he cough and choke immediately with that large amount of food entering his lungs? Really, what can be going on here?

Expert Answers

Ladislav Volicer, M.D., Ph.D., is recognized as an international expert on advanced dementia care. He is a courtesy full professor at the School of Aging Studies, University of South Florida, Tampa, and visiting professor at the Third Medical Faculty, Charles University, Prague, Czech Republic. Twenty-five years ago, he established one of the first dementia special care units.

Your experience just shows the danger of baryum swallow test, which in my opinion is not useful in a progressive dementia like your father has. Difficulties swallowing are common in advance dementias but the problem may be different on different days. You describe clearly that your father can swallow now. Baryum milk is a foreign substance that may be aspirated more readily than regular food and liquids. Baryum swallow test does not provide good information what is happening during eating regular food and liquids. Let you father enjoy his food and liquid as much as he can without additional tests. He may sometimes start choking and aspirating but there is no good way to prevent it completely. Even if you considered tube feeding, that would not prevent aspiration pneumonia, because it does not prevent aspiration of saliva that have many more microbes than food and liquids. It is important to keep mouth of your father clean, and teeth and gums in good condition to prevent growth of dangerous bacteria in his saliva. There are also some medications that may decrease aspiration by promoting cough reflex but they may have some side effects.

Community Answers

A fellow caregiver answered...

When I first learned of my husband's diagnosis of frontal lobe dementia, I did not understand that the pneumonia to follow would be from aspirating rather than from viral penumonia. Most helpful to understand what is really going on. He hates brushing his teeth and often gags when brushing. Understanding and coping come from knowledge and it is wonderful to find "safe" places to share and learn.

Lindasd answered...

During my father's end stage Alzheimer's he had open heart surgery which then three months later led to internal bleeding and resulted in stomach surgery which left him with a temporary feeding tube. I felt this was all ridiculous since he was 82 and in end stage Alz but not my decisions. The temp feeding tube meant he should not eat while his stomach healed - sure, tell that to a dementia patient. He was also given a swallowing test and we were told not to let him eat that he would choke besides the stomach problem. My dad constantly pulled the tube out...well, a long story. He was eating everything and occasionally choking. The stomach surgeon was disgustingly unavailable and nasty. I eventually took my dad to a gastroenterologist who was very kind and asked why we were there. I wanted to know if we removed the feeding tube along with his swallowing problem, what would happen. He told us that eating was an important thing to my dad obviously and if it were his dad he'd remove the feeding tube, let him eat and if he ate and aspirated, the risk was high he would die of pneumonia but at least he would have been happy. That it would just shorten his life. He also explained as the expert said here that swallowing issues were a common issue at this stage of Alz. He told us to let him live his life. We took the tube out and let dad eat what he wanted. In the end he died of natural causes at 84. The nursing home kept suggesting more swallowing tests and even speech therapy which we refused.

I think, personally, hate to say it, there is money involved in running tests, speech therapy(really? for a dementia patient is ridiculous) and doctors/facilities worry about risk of lawsuits when tests aren't run. It means the caregiver has to get a lot of information and stand firm on the care you want and reasons for it. Not easy but better for the patient.

Frena answered...

is it also possible he had a small stroke that could have temporarily affected his swallowing? alzheimer's itself doesn't switch "on and off, nor do people with alzheimer's suddenly develop a big problem. lots of other medical stuff can occur even in someone with alzheimer's and therefore we should stop attributing everything that happens to alzheimer's and get appropriate help and support. i'd always take hospice guidance on that.

Sandikat answered...

I don't know if this applies to your situation or not, but is your Dad on anti-depressants? Many anti-depressants can cause difficulty in swallowing, or sudden spewing of food or liquid.
Check into side effects of any medication he might be on.
Good luck, and God bless you!

The practical expert answered...

Swallowing can become a problem for any senior because of some kind of dementia or other medical condition. There are now products to help add additional saliva because as we age, many of us produce less saliva. Saliva is for breaking down food but also eases the swallowing process. For some, sucking on a hard candy helps promote enough saliva to eat a meal. There are swallowing techniques where a person actually touches the throat of the senior in a way to help swallow - an Occupational Therapist can show you the proper way to do it. Just trying these ideas can help prevent ending up on a feeding tube.