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Published on: July 3, 2011
by Bob DeMarco for Alzheimer’s Reading Room
Carole Larkin wrote an interesting article — How The Loss of Memory Works in Alzheimer’s Disease, and How Understanding This could Help You.
The article described in layman’s terms how problems with short term memory are directly related to the region of the brain known as the hippocampus; and, how when this brain region stops functioning properly a person losses their ability to store information.A person suffering from Alzheimer’s disease can hear you and even respond to you. What they don’t do well is remember what the hell you just said. Well, in layman’s terms anyway.
I grappled with this problem several years ago as I was constructing my own understanding of how Dotty was thinking (or not thinking) and feeling. I named the parallel universe that Dotty lives in — Alzheimer’s World. Here is one of my previous articles where I explain how I grappled with the issue of repetitive questions; and, how I learned to accept that what was happening each day was normal. Normal in a world filled with Alzheimer’s disease. One thing that drives Alzheimer’s caregivers crazy is repetitive questions and repetitive behavior.
It is clear to me that a large fraction of patients with Alzheimer’s disease ask the same things over and over, and do the same thing over and over. I understand how disconcerting this can be — I was there once upon a time.
It took me a long time to understand this repetitive behavior and adjust to it. I am looking at my Leonardo da Vinci pad and some of my bunkhouse notes.
One question I asked myself, why am I allowing this behavior to drive me nuts?
I know its going to continue to happen everyday until I figure out how to do something about it. Why can’t I accept that this is part of the reality of living with someone who has Alzheimer’s disease? Why can’t I accept this as a “normal” part of everyday living with Alzheimer’s?
Seems simple and straightforward doesn’t it?
These kinds of situations and experiences helped me to envision Alzheimer’s World, and then to start formalizing my construct of Alzheimer’s World.
For Alzheimer’s caregivers, there are two communication worlds: real world and Alzheimer’s World.
In real world, we communicate in the same way we always have. This doesn’t work well in Alzheimer’s World. This is especially true if we allow recurrent behaviors that are common to Alzheimer’s patients to get us angry, frustrated, and stressed.
I finally realized after years of thinking about it that it would be much easier if I went into Alzheimer’s World, my mother’s world, instead of trying to bring her back into my world.
I decided to go one step further, I invented a new and totally different world that I envisioned as a parallel universe. In the beginning, I would physically step to my left as if I was walking into, or entering, this other world — Alzheimer’s world. This giant step to my left reminded me to shift gears.
In Alzheimer’s World, the communication is very different than in real world. For one thing, there is only one other person in Alzheimer’s World most of the time — my mother. One thing that makes my mother different from the rest of us is that her short term memory is gone. It would be foolish of me to expect her to remember what I said a little while ago. She can’t.
As Alzheimer’s progresses, short term memory disappears. It no longer exists.
Once you accept and understand that short term memory is gone, you should not be surprised if a person with Alzheimer’s asks the same questions repeatedly. They can’t remember if they asked a question — once or ten times. You can remember because you can still operate in real world. Your short term memory is still working. Alzheimer’s patients transition to a new world in their mind — Alzheimer’s World, no memory world.
As I thought about this I came to a simple conclusion. Instead of trying to change Alzheimer’s World, instead of trying to fight Alzheimer’s World, not only would I accept Alzheimer’s World as a reality, I would go into Alzheimer’s World and learn how to communicate effectively.
Here is the first thing I learned. The fewer the words the better in Alzheimer’s World.
So when my mother asks me –what day is it? The answer is Thursday. Not I already told you its Thursday or you just asked me that five minutes ago. Thursday.
You know what I learned? I learned this is really easy to do if you practice. And, I learned you don’t get bent out of shape in Alzheimer’s World when you keep it simple. I learned something else. Once you finally accept that this is the way it is going to be, you might find yourself laughing or chuckling when the questions keep on coming. You fully expect what is going to happen — in advance. You figured this out in real world — by the way.
After a couple of years I thought to myself. It must be really disconcerting when you don’t know what day, month, or year it is.
I mean, how do you think you would feel if you never knew what day it was, or whether it was winter, spring, summer, or fall?
You would probably feel nutty and disconcerted much of the time.
So I found myself thinking — this must be really disconcerting to my mother.
I continued to think about it more and more. I started thinking maybe this is one of the reasons my mother gets mean or starts acting crazy. If she doesn’t know what day it is that must really be disconcerting. Think about all the other things she no longer knows or remembers. Things we take for granted when we communicate with others. I concluded that Alzheimer’s patients are most likely unsettled most of the time. Yeah, I think so.
Every wonder what it feels like when you are drawing a blank while trying to think?
So I added another behavior to my arsenal of communication tools that I use in Alzheimer’s World.
If my mother starts asking me a question over and over I think to myself, she must really want to know, or need to know. Maybe not knowing is disturbing to her.
Here is what I started doing. Instead of getting bent out of shape and giving her a completely exasperated response I started doing the opposite. I walked over, put my arm around her, put my head against her head and said — Thursday. Then I give her a little squeeze.
Obviously over time, I started doing this more often and in different situations.
Guess what I learned? I learned that I was no longer exasperated, bent out of shape, or stressed out. Quite the opposite in fact. I felt good about myself. I felt good, not bad.
Here is the best part. We both started feeling good, instead of BAD.
So you see, you do have a choice. You can accept that certain things are going to happen over and over. You can come to an understanding that these behaviors are not part of your real world, they are part of a new and very different world —Alzheimer’s World.
Soon you might conclude that you need to start developing some new and different communication strategies to communicate with someone that has Alzheimer’s.
Soon you might learn that something that use to drive you up the wall can actually have the exact opposite effect — it can make you feel good about yourself. Good when you deal with the situation effectively.
You start feeling good about yourself and soon the person who has Alzheimer’s will start feeling pretty good also. Instead of getting that nasty vibe from you, you will be sending a very different signal — I care, I’m here for you.
As you learn to communicate in Alzheimer’s World you will be doing something that is very important. You will be creating an environment that is very safe and very secure. Once your Alzheimer’s patient starts feeling safe and secure they will become kinder and more gentle.
If I treated you with respect and understanding wouldn’t you be kinder and more gentle to me?
Before you know it, you might learn the most important lesson of them all — Alzheimer’s World is very different than you think. Alzheimer’s World is a good place.
I know that some of you might want to crap on my parade and tell me a reason(s) this might not work.
Well it worked for me.
By the way, you can crap on me all you want. Why? Because in Alzheimer’s World I’ll tell myself you are the blue bird of happiness.
It is all good if you think its good. This is the way the brain works in the real world.
The best part of all of this is that YOU get to decide what you think. You get to decide what thoughts are rolling through your head during the course of the day.
If you tell yourself enough times that Alzheimer’s World is a good place, you won’t mind going there. In fact, once you learn that it is a better place than the place you might be in right now, you might learn to enjoy it in comparison.
It only gets better. Instead of reaching for the Excedrin plus, you’ll start reaching for the stars.
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