LBD and Communication 1: Language-Related Symptoms

The symptoms that affect communication are seldom obvious at first. They show up slowly, insidiously moving in and gradually changing the way a Lewy team communicates. At first, most problems occur during times of stress. Thus, when the Lewy partner (the person with the Lewy disorder) most needs to communicate well will be when it is hardest to do.

Language difficulties and weak facial muscles may make verbal communication frustrating and sometimes so exhausting that it isn’t worth the effort. The symptoms are not always obvious. Slowing thought processes, growing attention deficits and apathy may be seen as boredom. Light sensitivities show up as sleepiness. Misinterpretations and inappropriate responses due to failed thinking filters become identified as character defects.

Word recall difficulty. We all have this “it’s on the tip of my tongue” experience at times, but it can be one of the first symptoms of LBD. People often have a feeling they know the first letter of the word or even how many syllables it has, but the word just isn’t there.

We loved to go on picnics as a family. My dad and I still do, although we usually just stay home and eat in the backyard. Recently Dad suggested, “Let’s go on a, uh…Let’s take our food outside and eat on that table out there.” “Oh,” I said. “You want to go out back and eat on the picnic table?” Dad responded, “Yeah, let’s sit at the picnic table.” --Deborah

Deborah’s dad knew he didn’t have the right word and was able to talk around it to get his message across. Once he heard the word, he could use it with understanding.
Word substitution. Sometimes people use the wrong word and don’t even realize it.

We used to laugh when Quentin said green when he meant blue or things like that. Sometimes it wasn’t so funny. He once asked me for a chair and was mad when I brought him one. He’d wanted a step-stool. That was even before we knew he had MCI. –Beth

Quentin didn’t recognize he’d used the wrong word. Usually, the substituted word or phrase will be similar in some way to the intended word. It might:

• Have a similar function or meaning: chair vs. step-stool.
• Be in the same group: green vs. blue.
• Start with the same letter, or sound: computer vs. counter.
• Rhyme: washing fishes vs. washing dishes.

It may not have any apparent connection at all. The further into the LB journey a person is—or the more stressed—the more garbled the words are likely to be.

Weakened facial muscles. Even when Parkinson’s is not involved, Lewy tends to weaken the muscles around the face and throat. At first, it tends to attack and weaken those muscles that control the voice.

Quentin’s voice got so soft I could hardly hear him but when I asked him to speak up he’d tell me he was already shouting. –Beth

Quentin was making the effort to speak loudly; it just wasn’t coming out that way. Beth may also be hard of hearing--a common problem with aging caregivers. That makes Quentin's efforts even more ineffective.

As these symptoms add up, a person will become less able to communicate verbally and start communicating with their behavior—which we all do anyway, far more than we realize.

Next week, the blog will be about Lewy-related communication roadblocks other than language.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.