Sep 23, 2012

Alzheimer's Caregiving from a Strong Foundation

As it turned out, the rock solid foundation of understanding Alzheimer's disease that I acquired,  allowed me to develop all kinds of techniques and strategies to make my caregiving effort more effective.

By Bob DeMarco
Alzheimer's Reading Room

Previously, I put up an article -- How Alzheimer's Spreads Throughout the Brain.

The article contained what I believe is a required video for every Alzheimer's caregiver, their families, friends, and anyone that wants to gain a basic understanding of how Alzheimer's disease effects the brain.

Please consider sharing the link to the article with family and friends in the Alzheimer's community.

In order to become an effective Alzheimer's caregiver you need to build a good foundation of understanding about Alzheimer's, and dementia.

This starts with a basic understanding of what Alzheimer's does as it travels through the brain. The video, How Alzheimer's Spreads Throughout the Brain, is a clear, down to earth, easy to understand explanation of how Alzheimer's disease shuts down the brain. This is in relation to the stages of Alzheimer's. How the general pattern unfolds as the brain shuts down.

You cannot care effectively without an understanding of what is happening, and more importanly, what is likely to happen. It also helps to understand the stages of Alzheimer's. Not so you can recite the stages, so that you can come to expect in advance the changes in memory, mood, behavior, and motor skills that are likely to occur over time.

Understanding these likely changes will help you to accept them when they begin to happen. More importantly, you will come to understand that this happens to most of us -- not just you.

You have to get out in front of the disease and these likely changes, in order to understand, cope, and communicate effectively with someone suffering from Alzheimer's.

Could you start a car without the key? Could you drive a car blindfolded?

Here is a simple example.

Many Alzheimer's patients ask the same question over and over. Others repeat the same challenging behavior over and over. If you fail to understand that these are common symptoms of dementia, it is unlikely that you will be able to deal effectively with these behaviors.

When a person repeatedly asks the same question, or repeatedly engages in the same behavior over and over, does it stress you out? Drive you crazy? Make you feel confused and totally disconcerted?

Do you understand why this is happening?

It happens in part because the Alzheimer's patient can no longer store the answer to a question in their brain. So they ask again. They would not be asking if they did not have a need to know. If you understand that they "need to know" you can work on supplying this need, instead of complaining to anyone that will listen that the behavior is driving you crazy.

The part of the brain that allows us to store information, and remember, doesn't work for a person who is deeply forgetful and living with dementia.

Without fail, we get new readers every week that are being driven crazy because they are being asked the same question over and over. I know how they might be feeling, and so do most of you reading this.

I understood when my mother was acting strangely that I had to do something. In my case, I embarked on a mission to understand Alzheimer's disease upside down and backwards. The key word here is mission. I was up at 6AM and sometimes still up 2 AM doing research.

As it turned out, the rock solid foundation of understanding I acquired allowed me to develop all kinds of techniques and strategies to make my caregiving effort more effective. I knew what was happening, why it was happening; and as a result, I could focus on developing effective solutions to the problems.

Sadly, much of the information I needed then, and that, most Alzheimer's caregivers need now, is not readily available. Not easy to get or find.

So here we are.

I would also suggest that you read or re-read this article -- What’s the Difference Between Alzheimer’s and Dementia?

Believe in or not, this is the most widely read article on the Alzheimer's Reading Room (ARR). Each month more than 12,000 new, unique, individuals come to the Alzheimer's Reading Room to read that article. Each of those 12,000 plus have never been on the Alzheimer's Reading Room before. It is their first time.

There seems to be a misconception that somehow Alzheimer's is worse than dementia. In fact, Alzheimer's is a type of dementia.

The misconception that Alzheimer's is somehow worse than dementia is one of the reasons that many people are more scared by the word Alzheimer's, and not as scared of the word dementia.

These kinds of misconceptions can stand in the way of understanding.

The first step in the formation of effective Alzheimer's caregiving is a basic understanding of Alzheimer's, and how it works to destroy the various parts of the brain.

A large fraction of the information available here on the ARR is about caregiver technique. What to do.

The Alzheimer's Reading Room knowledge base contains more than 3,800 articles. You can find information by using the search box on the right hand side of every page here on the ARR.


Original content Bob DeMarco, the Alzheimer's Reading Room