Sep 8, 2010

Changing Perception and Understanding of Alzheimer's Disease -- Who Then?

By Bob DeMarco
Alzheimer's Reading Room

Yesterday, we devoted the day to Judy Berry. For those of you that are often frustrated by the level of care or the level of understanding of Alzheimer's patients you can look to Judy Berry, the Lakeview Ranch, and the Dementia Care Foundation. There are wonderful, innovative things happening out there.

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The simple fact that Judy won a Robert Wood Johnson Foundation Community Health Leaders Award shows that Alzheimer's awareness is growing. Awards like this will be bring a greater focus on the issues and then over time it will bring change. Positive change.

You might find this interesting. I never met Judy in person and I have never talked to her on the phone. However, I did exchange many emails with her and she has written and shared her knowledge on the Alzheimer's Reading Room.

Judy really has a deep understanding of Alzheimer's disease. Occasionally, I write to her with a problem question I receive via email. A question that I don't feel comfortable answering because I don't have a real frame of reference or any real experience. I am always amazed by the depth of understanding she has of the Alzheimer's caregiver and Alzheimer's patient.

I first learned about Judy Berry from Laurry Harmon. This happened at an important time. I had just decided to make a serious effort on the Alzheimer's Reading Room.

Little by little, I started to learn about what Judy was accomplishing at the Lakeview Ranch. At the time, we (Dotty and me) were operating in our own little vacuum. I knew we were having great success and I understood how we had changed and had continued to change as an Alzheimer's caregiver-patient team.

I was confident in my belief that persons with Alzheimer's were capable of more than most Alzheimer's caregivers understood. Now, that is a pretty big leap considering I only had one patient in my lab.

Just so we can be clear here. I am not saying that what we do, and how we do it, will work for every single person suffering from dementia. What I am saying is that I am convinced that what we are doing, and the way we do it, will work for a large fraction of persons suffering from dementia.

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My belief was strengthened by the success that Judy Berry was having. Judy was proving over and over that there is "more there", "more there", than most people can ever imagine. Imagine is the key word. Before you can make something happen you must first believe it can happen. In order to accomplish a goal you must first imagine it happening.

So thanks to Judy Berry I started imagining a very different world. As time went on I named it -- Alzheimer's World. I bet when most people hear the words Alzheimer's World they think of same very bad place. A kinda dead zone.

Well Alzheimer's World is not a bad place. In fact it can be a wonderful place.

I first imagined a new and different place where Dotty and I could operate effectively -- I called this Alzheimer's World. Then, I started describing Alzheimer's World to others. I did this with the hope that they would go there and find out for themselves what it is like.

But before I did any of this this, Judy Berry envisioned the Lakeview Ranch. A really remarkable dementia world. A place that is radically different.

A place where Alzheimer's patients that nobody else wants go to live out their life with dignity.

And now to my point.

Instead of complaining that politicians are not doing enough for Alzheimer's patients and Alzheimer's caregivers.

Instead of saying all these people are "dopes" because they really don't understand Alzheimer's.

How about we take a more proactive approach. How about we help them learn and understand?

Judy Berry decided to devote 100 percent of her life to patients that can best be described as the "outcasts" of Alzheimer's disease.

Perhaps you might consider giving 1 percent of your time to make a difference.

You could bring the Lakeview Ranch model into the awareness of your local politicians, hospitals, and charitable organizations.

You could discuss the Lakeview Ranch in your support group and see if there is a willingness to help. To organize a campaign to help.

Who knows. A few of you might get together and make a difference.

Start by imagining what that might feel like. The feeling of making an important difference. Then imagine what you might be able to do.

Then go do it.

If not you? Who then?

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room