Jun 3, 2014

Alzheimer's Care as a Form of Communication

I learned over time, as an Alzheimer's caregiver, that the cumulative acts we perform each day can and do make a difference.

Alzheimer's Care as a Form of Communication

By Bob DeMarco
Alzheimer's Reading Room

The Dotty in this story is my mother. Born in 1916, Dorothy was diagnosed with dementia in 2004. Probably Alzheimer's disease.

The first chapters of this story can best be described by the words burden, confusion, and to a certain extent hopelessness. I think this describes most Alzheimer's caregivers.

However, I managed with Dotty's help to turn this story into a story of hope. Somehow, together, we managed to turn burden into joy.

This was accomplished by a series of acts, cumulative acts, that we performed each day. Tiny little acts that can go unnoticed. Powerful little acts that can change a person living with Alzheimer's into a lovable person.

I learned over time, as an Alzheimer's caregiver, that the cumulative acts we perform each day can and do make a difference.

At the beginning Dotty was both mean and harsh. Almost every day, Dotty told me to get out, she didn't need me, and frankly she would be better off without me around.

Most days, Dotty and Alzheimer's bombarded me with negative reinforcement. This can best be described by the word -- agita. Agita a feeling of anxiety, frustration, and agitation. For me this meant a kind of emotional stomachache and heartache. Almost every day.

I soon realized that Dotty was confused  and this was the major cause of her behavior. Dotty had no idea she was demented. She didn't know what day it was, what month, what year, and couldn't tell me if it was winter, spring, summer or fall.

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At first, when Dotty would become mean or harsh, I tried to reason with her. Much in the same way I would reason with her or any other person over the course of my life.  It didn't work.  In fact, all it did was make her more confused.

The more I confused her, the meaner she became.

Explaining something to a person with Alzheimer's is overwhelming. Too many words.

Often the explanation is too hard for a demented person to understand. Besides, if enough time goes by, they don't even remember the episode you are trying to explain. It is easy for a person living with dementia to conclude that it is "you" that are out of their mind. Especially when they conclude that what you are talking about "never happened".

This lead me to start thinking about confusion. What happens when a person is a confused?

Ever had a person lash out at you when they were confused about something. For example, lets say a person goes to work and something happens that upsets them. They come home and the next thing you know they are being mean or harsh to you. You talk about it and then find out, they are not angry with you, they are angry about something that happened that you were not even involved in. They take it out on "you".  Ever happen?

When a person becomes confused and if they don't clear up the confusion, they next become frustrated.

If they become frustrated enough, they then become angry.

Once angry they are likely to "lash out". They will "lash out"  either at the person that is causing the confusion, or at anyone that gets near them.

This can become a recurring pattern of behavior.


In the case of someone living with dementia, if they become confused over and over, it is very likely that they will become mean and hard to deal with. This is often referred to as challenging behavior.

If the confusion is not "defused" they will become harder and harder to deal with. Yes, the situation can become what seems to be -- hopeless.

I finally realized that I could not defuse Dotty's confusion by explaining why she shouldn't be confused, or by trying to engage her in a conversation about the "errors" in her thinking.

So I decided to do the exact opposite of what I would have done in the real world.

When Dotty would tell me get out, I don't need you, I decided to meet those words and behavior with kindness  and by being gentle.

Instead of trying to explain to Dotty why she did need me, or why she could no longer live on her own I did this. I put my arm around her shoulder, put my head on her head, and said, I'm not going anywhere. I'm here to take care of you. We are together now. I said as few words as possible, I said those words in a kind, gentle voice. I meant what I said because it was true.

I finally learned that we actually lived together in a parallel world. I call this world -- Alzheimer's World.

Instead of trying to explain, I started trying to understand what was happening from Dotty's perspective. Not about me and how I might be feeling, about Dotty and how she was feeling.

Soon by thinking about her words and actions I started to discover that there are certain behaviors that are common in Alzheimer's World. In the context of Alzheimer's World these behaviors were normal, the norm. This seemed to comfort me.

Let me make this clear. The same words and behaviors didn't seem so bad or confusing to me. They seemed normal. Normal for Dotty.

I soon learned what I needed to do was to create a safe, secure, and trusting environment for Dotty. Isn't that what I had been doing all along? Not really. Not for a person living in Alzheimer's World.

Over time, I slowly introduced a series of activities and personal behaviors that were designed to create a secure, trusting environment for my mother.

One thing I did was to create a very specific routine. We did the same exact thing every morning when she woke up. In fact, we started doing the same exact things around the same time of day, all day long, every day. If you saw the movie Groundhog Day, you know what I mean. Dotty would wake up, and it would be the same day, every day.

In Groundhog day, Bill Murray starts out by doing all kinds of destructive things each day. He can even kill himself because he knows he is going to wake up the next morning and repeat the same day over and over. Finally, he decided to make effective use of his time. He learned how to play the piano, ice sculpt, and finally started saving people from injury and death.

The best part comes when he learns how to be kind and gentle to the woman he loves. It took him a lot of time to accomplish his goal. Lots of false starts and slaps in the face. But, finally through trial and error he discovers the path to her heart.

Remind you of anyone?

So this is how I finally discovered the right path  to turning Dotty into a loving, caring person. I learned that

the cumulative acts I performed each day were the acts that made the difference.

The goal was to create a safe, secure, trusting environment that was understandable to Dotty. What she needed.

Each day, as many times as I can, I touched Dotty's hand. When I was walking by her I stuck out my hand, I didn't say a word.

Dotty would stick out her hand, and I guess you could describe this as a "high five" with the exception that it isn't high and we didn't slap hands.

Sometimes when Dotty stuck her hand out, I attached the pads on my finger tips to the pads on her finger tips.

Somehow we found this comforting. You get a better tactile feel. Dotty smiled. I smiled back at her. Very comforting for both of us.

I rubbed Dotty's head. Held her hand. I introduced all kinds of tactile communication into the equation.

More than ever I am convinced that Alzheimer's care giving can lead to great joy.

Dotty went to Heaven on May 25, 2012. She looked very peaceful.

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Original content Bob DeMarco, the Alzheimer's Reading Room