Dec 14, 2017

How to Adapt the Caregiver Brain to Alzheimer's and Dementia

If you open your mind, relax, and ask all the right questions you might be surprised to learn that the situation you find yourself in is very different than you are currently imagining.

"Rather than trying to bring the person living with dementia back to reality, why not try to enter their reality"

By Bob DeMarco
Alzheimer's Reading Room

In order to deal with Alzheimer's each and everyone of us who cares needs to adapt.

In our case, and for the most part, we are adapting to a previously unknown - Alzheimer's disease.


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Most of us start out in a state of denial; and often we are filled with a sense of hopelessness.

We have to deal with grief. After all, doesn't the Alzheimer's Association teach us that no one survives Alzheimer's disease? If you accidentally buy into that myth, you might conclude the situation is hopeless. Many do.

Denial, grief, confusion, heartache, and the feeling it is hopeless. We start out caring from behind the eight ball.

All of these negative emotions and feelings can rob us of our ability to adapt.

There is hope. As humans we have the ability to adapt. We do it all the time over the course of our lives.

We move, we change jobs, we take care of children, and we deal with adversity and death. The list is longer but the message is the same, we have the ability to adapt and adapt we do.

Some of us, as Alzheimer's caregivers, put up roadblocks.

We repeat the same nagging complaints over and over. We stubbornly cling to the past. We engage in thinking that keeps us frustrated and blocks us from moving forward.

Most importantly, we fail to look at Alzheimer's from the other persons point of view. We fail to look at the disease


Lets start with a simple example. The majority of AD patients follow their caregiver around. Frankly, most of the deeply forgetful can't stand to have you out of their sight.

The only real exceptions to this rule is when they are engaged in an activity. Like doing a puzzle, or talking to a the best Alzheimer's caregiver tool of them all.

Caregivers often say something like, "I can't get a moments peace, s/he follows me all over the place".

The caregiver complains or maybe vents. Over and over and over and over. Same thing.

Perhaps if you look beyond the obvious you will be able to adapt. Normally to look beyond the obvious you have to ask yourself a question that begins with a word like, Why?

Why do the deeply forgetful follow us all over the place, call out our name when they can't see us,


Why does the person living with dementia follow us around, ask where we are when they can't see us, and ask repeatedly, when we are not there, when are we coming back. Simple really.

They rely on us.

They need us so they can stay attached to the world.The world is a scary place for the deeply forgetful at times. They just can't sort things out on their own. So they look for the one thing that is always constant, always tangible -

The deeply forgetful fear one thing more than any other thing --  they fear that the one person they can rely on will leave them. Leave them all alone.

Forget about them.

Try asking yourself this. Is it a bad thing that a person who is deeply forgetful will follow you around all the time?

Or, is it a good thing that they love you so much, and trust you more than life itself? 

They need you.

In order to successfully adapt you need to use your brain. Ironic isn't it? They can no longer use their brain effectively, so they rely on you to use

If you complain about the same thing over and over and over - stop it. Instead ask yourself, why isn't what I am doing working?

Stand back, assess the situation. Ask yourself: Why, How, When, What, and Where.

It might not be easy when you start, but once you start asking the questions the answers will come.

You will adapt.

The deeply forgetful person is trying to build a bond with you. They won't stop trying. Why fight it? Why not accept they need you, love you, trust you; and most often, you are the only one they will trust and rely on.

It is a given really.

Open your brain. Look at both sides of the coin. You will likely come to the conclusion that there is more to the situation or experience than you are currently imagining.

Stop looking at the deeply forgetful as if they are the antagonist.

If you open your mind, relax, and ask all the right questions you might be surprised to learn that the situation you find yourself in is very different than you are currently imagining.

You just might see things in a new and different light. Your brain has the innate ability to adapt.

I'll suggest that you first consider that the person who is deeply forgetful needs you. I'll suggest that you make a concerted effort to smile at the person who is deeply forgetful over and over each day.

When they start smiling back you'll be on the path of adaptability. You might even be delighted.

Instead of complaining, you might start laughing when you tell your stories. Odd isn't it, how the same exact behavior that drove you crazy might make you laugh if you open your mind.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is the Founder of the Alzhemer's Reading Room. The ARR Knowledge Base contains more than 5,000 articles. Bob lives in Delray Beach, FL.

Bob DeMarco, Alzheimer's Reading Room, 2012
"How to Adapt the Caregiver Brain to Alzheimer's and Dementia"