PPA Semantic variant Swallowing issues

Lgb35

DH has been diagnosed with FTD/ Primary Progressive Aphasia/Semantic variant.

He has had 2 tests so far due to trouble swallowing. They have determined it is caused by the muscles in his throat not working in the way they should to move food down during swallowing.

I know this is a possible complication as the disease progresses but it seems early to me. DH is still fairly independent in ADL’s.
Have any of you experienced this? At what stage did you start dealing with it? What did they do for your LO?

Metta

My DH began intermittent swallowing issues in late stage 7. Last week he could no longer swallow solid food. Three days ago he could no longer swallow puréed food and began hospice comfort care. Yesterday he could no longer swallow liquid, even a half teaspoon. He was choking on his own saliva. He had his first dose of morphine and I am on vigil waiting for him to die. He has been choking and gurgling all night.

If your DH is able to follow instructions, a speech therapist may be able to help.

harshedbuzz

@Lgb35

I'm sorry you are facing this challenge with your LO so early in the progression.

In Alz and VD, swallowing difficulties typically are a late-stage symptom. In certain variants of PPA, specifically logopenic and nonfluent, swallowing issues can surface sooner because of the loss of muscle control.

With my dad, swallowing problems and aspiration came late in the disease progression. That said, dad was still ambulatory, partially incontinent and verbal to the point of conversational. The SLP who did a swallowing evaluation was shocked by the disconnect between his storytelling and how dysfunctional the mechanics of his swallowing were. The SLP suggested tweaks to his diet— no mixed texture foods (cereal & milk or chunky soups), no liquids with food, no straws, being seated upright, etc.

Mom, who does not have dementia, developed silent aspiration. In her case it was triggered by a combination of old age slowing down/"wearing out" of the upper end of her GI tract and the use of Fosamax. The SLP and GI doc, tweaked her diet more aggressively initially offering her a 100% "soft diet". In the hospital, that looked like scrambled eggs and mounds of orzo with random sauces. She also needs to eat >4 hours before bed and sleep with her head elevated.

Mom <knock wood> has done well following her feeding protocol. Dad didn't live long enough to really get his feeding plan in place as he died 8 hours after the SLP and I went over the results of his evaluation. I will say, he did not seem to suffer and passed peacefully.

HB

Maru

https://alzconnected.org/discussion/74856/ppa-semantic-variant-swallowing-issues

If the problem is musclular rather than brain a speech therapist can definately help. Our daughter has been teaching infants,, children how to do this for many years. Your doctor should be able to refer you to a speech pathologist.

Vitruvius

As you may remember my DW also has Semantic Dementia [aka semantic variant of PPA]. Swallowing became a problem in late Stage 6, about three years ago, not long after she entered a MCF. At first they began cutting up her food into small pieces which she could then eat by herself.

But according to my journal it was almost exactly two years ago she began to require thickened liquids and puréed foods and has been on this since then. Recently they increased the thickness of the liquid to the consistency of honey as she was showing signs of aspiration. Now in Stage 7f, my DW is free to consume as much as she wants, but in actuality she eats very little. Hospice told me she needs only 24 tablespoons of food and drink per day at this stage to sustain herself. 

I don’t mean to be contrary, but our experience with a speech therapist was completely futile and upsetting for my DW. 

CindyBum

https://alzconnected.org/discussion/comment/261024#Comment_261024

Thinking of you and sending you big love.

SDianeL

my DH had Alzheimer’s-Posterior Cortical Atrophy and declined quickly after stage 6. He started pocketing food and couldn’t remember to swallow. A Speech Therapist did a swallow test and the facility changed his diet to mechanical soft, soft, then puréed. Shortly after that he started choking and aspirating. They would suction him when that happened. Then he aspirated and developed pneumonia. Therapists didn’t help other than the dietary changes. The muscles are controlled by the brain. If the part of the brain that controls swallowing is diseased that would explain the inability to swallow. That was what happened to my DH.

SDianeL

this explains it:

• Swallowing Link: While language is primary, the underlying FTD pathology affects brain regions that can also control swallowing, causing problems like drooling, multiple swallows, or choking.
• Degeneration in brain areas like the insula, hypothalamus, and associated networks (linked to FTD pathology) can disrupt motor control and eating behaviors, notes this case study and this study.

SDianeL

I found this and it might help. 7 stages of FTD: https://www.probablygenetic.com/blog-posts/7-stages-of-frontotemporal-dementia-ftd

Lgb35

https://alzconnected.org/discussion/comment/261088#Comment_261088

thank you. I do remember you are walking the same path ahead of us. I do think of you and your DW often. Prayers for you