Communicate with people with dementia: when they repeat words, sentences or gestures

Nineteen times in half an hour. My friend counted. At dinner my mother, who has dementia, mentioned the phone bill that she had paid a LITTLE late, nineteen times. In half an hour.

Mom: “I have this letter on the table. I was going to show it to you …”

Me, out loud: “It’s the phone bill. It has already been paid. Everything is fine.”

Me, internally: “Big breath. I paid for it, I paid for it! So it was a LITTLE late! OK, OK, it’s not about me. Big breath. Big breath” …

Nineteen times. In half an hour. (I said?)

Some days this doesn’t bother me. Truly. I am all smiles and patience and I take very normal sized breaths. But then there are the other days. These are the Murphy’s law days when the sink started leaking and ants came into the kitchen and the car started making a strange noise all before noon. These are the days when perseverance seems to get worse (YOU KNOW!) And it’s more likely to be an issue that unintentionally hits a nerve (like my mom was an accountant and paid all the bills before she got them and I … I take my daddy.)

Perseverance (Think “persevere.” Both you and the person with dementia).

I doubt this is anyone’s favorite dementia symptom, if it could exist at all. A person with dementia (depending, as always, on the severity of the dementia, the time of day, whether the tap is leaking or not, and the relative rainfall in Antarctica, or who knows) may persevere or persevere in saying (or doing ) the same over and over, etc. etc., sometimes even the listener may be in danger of self-inflicted baldness. It is the correlate of the older person with the series of “but why” questions of preschool children, except that preschool children tend to vary from time to time.

In fact, even as healthy adults, we sometimes repeat. We can tell a story to someone who has heard it or forget that we already did something and do it again. I’m pretty sure every once in a while, while doing the dishes and thinking, I don’t know, the problem of ants, car noise, or relative rainfall in Antarctica, I inadvertently washed the same pots twice. So some pots are very clean and I have wasted a little soap, well. Or I have bought stamps because I need them, but when I save them I realize that I have not, because someone (me?) Already bought them and I put them in my wallet. And, ashamed to say, I have sometimes described the plot of a movie in great detail to the person I saw it with. In dementia, perseverance is really this, on steroids.

What to do what to do

So what do we do when someone with dementia repeats and repeats and repeats what they say? I’ll start with the bad news. If the person knows that they have told us, we must respond. For the listener, it may be the seventy-five thousandth time, but for the person with dementia it is the first. Just remember that repetition is part of the disease process and take a deep breath.

Now for the good news: there are a few things that can help. Fortunately, my mother can still read a little, so when I’m not in the middle of dinner and I have the energy to get up from the chair and grab a pencil and paper, I can write the message. Then the next time I bring up the phone bill or whatever, I can say, “Oh, we take care of all that” and let him read the message. This may or may not help her remember, but at least I’m not saying everything the same way every time, and it helps prevent my hyperventilation.

Sometimes it also helps to gently change the subject.

Mom: “I have this letter on the table …”

Me: “Oh, I saw it. How about the chicken and rice?”

Mom: “Oh, it’s pretty good.”

It also helps to remember that people’s procedural memory (the part that remembers how to do things) generally stays in better shape much longer than their episodic memory (the part that remembers all those facts and events). So if a person with dementia is gently guided into doing something familiar, they will often automatically accept it. So depending on the situation, putting a glass of water in front of them, or starting to walk instead of standing, or putting on some singing music or handing them a sweater can create a much-needed distraction.

Another thing that helps me personally is remembering that my mom and I have been on the other side of this. One of my earliest memories is of me singing and singing and singing inside our house. I was singing the song “Do-Re-Mi” from “The Sound of Music” (which, as you can tell, repeats itself). I remember my mother leaning down at my level to speak to me.

Mom, sweetly: “Could you sing something else?”

Me: “No, because it doesn’t stop. When you get to the end, it comes back, like do, do, do, do (demonstrating the descending arpeggio).”

Mom: “Okay, but now PLEASE stop that song and sing something else.”

And his tone of voice was still pleasant enough, but I think I saw a bit of a clench in his jaw, and I could swear he took a deep breath. So I did what he asked.

Me, singing another song that occurred to me: “Ninety-nine bottles of beer on the wall, ninety-nine bottles of beer …”