This Ain’t Just About Memory: Dementia and the Senses (Part 1: Hearing)

I’ve been writing posts that highlight non-memory symptoms of dementia.

Over the next five weeks, I will discussing sensation and perception. Five weeks, five senses, right? We will talk about how dementia impacts how a person experiences the world.

Today we will focus on hearing. If some of this is familiar, it’s adapted from a post I wrote in 2016.

Like many spouses, my husband occasionally points out my weaknesses. Like many spouses, I often become defensive when my husband points out my weaknesses. However, he did once (and only once, obviously) note a weakness that I realize is valid.

Here goes…

I’m okay at explaining something to someone for the first time. My weakness is re-explaining it when they don’t understand my original explanation.

Let’s say I’m explaining a concept to a student. Maybe I’m talking about the genetics of Alzheimer’s. Perhaps I use language that the student just isn’t able to understand.

“I don’t get it,” says the hypothetical student.

Here’s where I go all wrong…I struggle to understand what exactly the student isn’t understanding, and I explain the genetics of Alzheimer’s again–using the same language and the same examples–except in a much louder voice.

Here is my weakness: If someone doesn’t understand what I’m saying, I just say it again…in a louder voice.

I tend to think that my original explanation was so clear that the only reason the other person would need clarification is because they have a hearing problem. If you are thinking that I overestimate my own eloquence, you may have a point.

Chances are that I used a loud voice in the first place (no one has ever complained that my voice isn’t loud enough), and chances are that the person doesn’t have a hearing difficulty. It’s likely that my explanation isn’t resonating with them for some other reason. Yet, I just repeat the same explanation that doesn’t resonate–but louder. It’s not helpful.

My weakness tends to extend beyond explaining concepts to college students. If something I say doesn’t make sense to my husband, I’ll just say it louder to clarify. I know it’s not productive, but I do it anyway. If I’m at a work meeting and make a statement that results in quizzical looks from my colleagues, I usually just repeat the statement again. And I step up the volume, of course.

Unfortunately, I do the same thing to my friends with dementia. If I ask someone with dementia a question and don’t get a response when I expect one, I figure they didn’t hear me, so I ask again in the exact same way–except louder. And, I will add, that my louder voice probably also conveys irritation even if that’s not my intention.

People with dementia may have hearing difficulties due to age or other factors, but dementia itself doesn’t impact your ears. However, it does impact how you interpret auditory data.

Sometimes I forget that people with dementia need a bit longer to process any question I ask. I have to force myself to silently count to ten as I wait for a response. After ten seconds, I force myself to rephrase (not just repeat) the question. Maybe I use more hand motions or pointing. Maybe I use a different word for an object. I change something…something other than the volume.

People with dementia often have trouble focusing on the important auditory information and blocking out the rest. While I may be able to have a conversation with the TV turned on, someone with dementia typically finds it easier to focus on our conversation with the TV turned off.

When a person with dementia is struggling to have a conversation with me, I look for extraneous auditory data that can be eliminated. Can I shut the door so we can’t hear the conversation of the people in another room? Can I close a window so the noise of the cars driving down the street isn’t a distraction?  Can I turn off the washing machine temporarily so my voice doesn’t have to compete with the swooshing noise?

It’s not that the person with dementia can’t hear over these other sounds. This isn’t a matter of volume. It’s that their brain has to work hard to distinguish important auditory data from unimportant auditory data. They may become tired or overwhelmed after trying to do this for a short time, and we may perceive this as disinterest.

Once I was sitting in a nursing home lounge talking to a man with Alzheimer’s disease. I was struggling to get a response from him. I was likely repeating my questions and increasing my volume. As my attempts at conversation were failing, there was very faint knock from down the hallway. It was a visitor giving a quick tap to a resident’s door before entering their room. I could barely hear the knock and probably wouldn’t have noticed it had the man I was visiting with not responded to the noise.

“Come in! It ain’t locked!” he yelled.

If he could hear that noise, his hearing was obviously not an issue. I closed my eyes for a second and did a quick survey of auditory information.

In the distance, I heard some chatter at the nurses’ station. There was some incessant beeping from residents who had pressed their call buttons for assistance. The window air conditioner in the lounge was making a rattling noise. I could hear the shuffle of nurses’ aides hustling from room to room, and a couple of residents across the lounge seemed to be having a conversation about the weather.

A few moments ago I hadn’t been hearing any of this noise. Sure, I was taking in the auditory data, but my brain was disregarding it in favor of focusing on the conversation I was having. This wasn’t intentional on my part. I did not have to plan to block out all of these extraneous sounds. My brain did that for me automatically.

My conversation partner, who had dementia, was not so fortunate. It’s not that he wasn’t trying to be engaged in our conversation. It’s not that he didn’t care about what I was saying. It was that his mind was not perceiving what I was saying to be any more important than the slightly obnoxious hum of the air conditioning unit.

When we enter Dementialand, we need to set individuals with dementia up for success. In this particular situation, I had not done that. I had asked this man to have a conversation with me in an environment in that was not conducive to the dementia brain. Increasing my volume was not going to help; in fact, a louder voice would likely convey an intensity that would discourage rather than encourage a positive response.

Once I was talking to a woman who had vascular dementia after a series of small strokes. I asked her a question. When she didn’t respond I went to my default next step…I asked her again…only louder. Much louder.

This time she made eye contact with me. She motioned for me to come closer. I figured her voice was weak, and she wanted to make sure I could hear her responses. I put my ear close to her mouth.

“I can hear you!” she yelled in my ear. “I’m not deaf, honey! Stop shouting!”

I guess I deserved that. Apparently this woman would agree with my husband’s assessment of my weakness.

Louder is seldom better.

And I’m a work in progress.

10 thoughts on “This Ain’t Just About Memory: Dementia and the Senses (Part 1: Hearing)

  1. Thank you so much for this great reminder! I know I’ve said this before, but oh how I wish you could train every medical professional who cares for with people living with dementia. Every time someone raises their volume when talking to my sweet (non-verbal) momma, her eyes pop out of her head and she looks completely startled. It can be downright frightening when someone raises their voice and you have no idea why!

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  2. Strange that your post is about hearing and communication. I attended a class this past week for mid-stage Alzheimer’s caregivers. One bit of advice when asking a question of a person with Alzheimer’s was to not phrase the question differently the second time. Interesting conflict of information. I would think the situation would dictate which position you would take. And too, the mental acuity of the person you are dealing with (who has Alzheimer’s) would impact how you communicated with them. Excellent post — I thank you!!!

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    1. I could probably explain this better. When you rephrase, think SIMPLER and more straight forward. Also, a certain word might not click while another might. For instance, “Let’s get in the SUV” might not resonate, but “Let’s get in the car” might work.

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  3. This is so interesting and useful. I never would have thought about what I would call minor background noise effecting understanding. Yes, minor to me, but over load to the one with dementia. Thank you for sharing your advanced insight.

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  4. Elaine,
    I love your post and even more, I love that you are going to take on all 5 senses This will help others understand just what happens during the course of our Alzheimer’s Journey.
    I hope you don’t mind but I am going to share this as well as the following 4 posts;
    Thanks for doing this!

    B

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  5. You mentioned rephrasing as another mechanism when a person with dementia isn’t understanding the question. We have a paper summarizing effective communication from the Alzheimer’s Association (I think) that suggests that it’s best to repeat in the same words (which makes sense, so we aren’t throwing a difference set of input at the person), and also encourages minimizing questioning, since folks are so put on the spot to process an answer. Would welcome your input on these issues.

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    1. I find that sometimes a word doesn’t click—but another word works. I don’t necessarily recommend a completely new question. And sometimes an action (like pretending to brush one one’s teeth) helps. I totally agree with minimizing questioning!

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