Jun 17, 2011

Alzheimer's and Alzheimer's Caregiver Perception

While reading through the reader comments recently I realized that our own perception, the perception of the Alzheimer's caregiver, often gets in the way of discovering new, different, and effective ways to keep the Alzheimer's patient happy and engaged.

By Bob DeMarco
Alzheimer's Reading Room

What do you see?
Happy and engaged in the context of Alzheimer's disease is best described by two -- "more there".

Caregiver problems of perception, or with preconceived notions, really shouldn't come as a surprise. After all, we are all a compilation of our life experience.

Let's face it, we are all affected by our own perception and preconceived notions.

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Ever had this happen. You meet someone, get to know them and then say, "you are a lot different than I thought". Was your original opinion affected by your perception? By what someone said to you? Why did your opinion change?

Lets use the example of Pamela our writer. She saw the video of Dotty and Harvey the repeat parrot. She also read my articles on how Harvey engages Dotty and has helped to increase Dotty's overall level of engagement with others.

However, her initial perception was that a repeat parrot would not work effectively with her mother. She based this, I believe, on her own mother's behavior as she perceived it. Or, was her perception affected by the simple fact that Harvey is a toy?

Nevertheless, her mother's birthday rolled around and she decided to give the parrot a try. You can read her article and learn that she was pleasantly surprised at her mother's reaction to the parrot. As it turns out, after her sister visited she was also "tickled" by the interaction she saw between her mother and the parrot.

Now keep in mind, when I first obtained the parrot I was thinking this parrot will make my mother happy and make her laugh. I value the laugh and smile very highly in our Alzheimer's environment.

I stumbled on to the idea that I might use Harvey very effectively only because I left him on and heard Dotty telling him she had a headache. She had already told me several times the same day she didn't have a headache. After that, I left Dotty and Harvey alone together and turned on my flip video camera so I could film them without interruption. It was at that point that I realized I was on to something. I now believe that the repeat parrot is the best of all Alzheimer's caregiver tools.

You will never know if the parrot will work effectively for you unless you try it. Sure its a toy. We all have a child within us. I know this because all these older old down here in Delray Beach laugh when they see the parrot. Then they want to get one, and they are not memory impaired.

The other day one of our readers mentioned that she was reluctant to giver her mother in law a coloring book. Here are her words,
There are suggestions of giving her a coloring book, but she's not a child.
Well for sure her mother in law is not a child. But is that the issue? What if coloring books made her mother in law happy and more engaged in some way -- "more there". Wouldn't this bring joy into the heart of both the caregiver and the patient? Perception. Sometimes a road block.

By the way, don't many or most Alzheimer's patients become more childlike as they progress? You tell me.

I believe the majority of Alzheimer's caregivers are affected by their own perceptions, and also affected by how they think others might perceive them.

I hear caregivers say, they can't take their loved one out because they eat with their hands. Aha, perception. Or, is perception actually spilling over into embarrassment in these examples. Is embarrassment an issue. Is it embarrassing when someone you know, an adult, eats with their hands?

Would it be embarrassing for someone to see your adult talking to a parrot as if it were real, coloring books, or eating with their hands? Embarrassing for you?

As a Alzheimer's caregiver you have to come to a simple conclusion, the rules have changed. Things and the ways things work can be very different in Alzheimer's World.

This dictates that your broaden your perception. This is not easy to do. Alzheimer's World can seem at first like it is a strange and bizarre place, an upside down world.

But, is this world upside down and backwards to the Alzheimer's patient? Is their perception of the world different than yours?

Maybe discovery means finding what makes most sense in Alzheimer's World, even if it makes no sense in the real world.

I have come to conclude that Alzheimer's World is a simple place. So simple that it is hard to perceive. It seems at first that Alzheimer's disease is so complex that it is impossible to understand. Is it?

Are you trying to perceive how an Alzheimer's patient feels in the context of the real world? Is it about what makes you happy and secure, or about what makes them happy and secure?

My success with Dotty is based on my willingness to try anything. Much of it is very simple. I try and do the kinds of things that made her happy before she entered this new world -- Alzheimer's World. Sometimes I have to figure out how to accomplish that mission using a tool that is not "adult like".

Like you, I often stumbled on to something that really works well with my Alzheimer's patient. Sometimes it takes longer than it should have. I let my own perception and preconceived notions get in the way.

If Dotty smiles, laughs, or becomes more engaging that is good enough for me.

More Insight and Advice for Caregivers

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,680 articles with more than 512,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room