Aug 14, 2018

Rewiring My Brain and Stepping into Alzheimer's World

Once you start to understand how things work in Alzheimer's World - you get calm and comfortable.

the stairs to Alzheimer's World
By Bob DeMarco
Alzheimer's Reading Room

Once you get calm and comfortable you give off a better "vibe" to someone that has Alzheimer's.

Over time as you learn how to understand, cope and communicate with a person living with dementia you will find that instead of being at odds most of time you begin to relate better to each other. Once you start to relate to each other you find that it is much easier to operate in a world filled with Alzheimer's disease.

The key word here is relate.

Care of Dementia Patients

You relate well and get along best with your closest friends don't you? Well in order to relate well with a person living with dementia - you have to adjust to the circumstances.

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I decided I would find a new way to communicate with my mother who was living with Alzheimer's disease. I wrote that on my da Vinci pad in 2004. This was at the same time I was coming to another conclusion, something had to change and that something was me.

I did not perceived the changes in communication as being difficult. After all, I had been studying communication and decision making all the way back to college days, and ever since. I figured some practice and I would get the hang of it.

What I did not immediately perceive was how difficult it would be to change all the things I had learned over the course of my life.

How to talk and communicate with dementia patients effectively

For example, I had to learn how NOT to feel bad when my mother said something mean spirited to me.

I knew consciously that every time my mother said something "mean" to me, she didn't mean it. I knew this because she never said any of those things to me before dementia started affecting her brain. Her ability to think and feel.

So, I knew it was Alzheimer's that was causing her to be so "mean".

Nevertheless, when Dotty said something mean, and even though I knew she didn't mean it, I still felt sad, angry, and often snapped back at her. In other words, I reacted the way I would react to anyone that treated me in that way.

All I can say is, Wowie Zowie. It is very hard and very difficult to change patterns of behavior that you learned over 50 years.

I had to rewire my brain.

I decided it would be easier if I could put myself in a new place. This is why I invented Alzheimer's World. Instead of trying to relearn my entire life, I decide I would start a brand new life, a second parallel life.

My new second life would reside within the confines of Alzheimer's World. In Alzheimer's World all the rules, feelings, and methods of communication would be different.

I started developing some ideas about how I would communicate effectively with someone that couldn't remember they were mean to me, and really couldn't remember my "too long" explanations of this and that.

In order to get control of my emotions I knew I had to move fast and seamlessly into Alzheimer's World. I had to get there before the anger came up. Anger, even though I knew I shouldn't be angry.

I came up with an idea that worked. As soon as the craziness started, I would take one giant step to the left. An actual physical step to the left. As I made this step, I would tell myself that I was going into Alzheimer's World.

It took a while, but it worked. My brain was rewired. More or less segmented into two parts, real world and Alzheimer's World. Over time I learned to separate one from the other.

Once I learned how to step seamlessly into Alzheimer's World something wonderful started to happen. Dotty finally, after a few years, stopped saying all those mean and nasty things to me.

She started telling people, Bobby is a good boy.

Here is the best part. The better I became at communicating in Alzheimer's World, the sweeter and more cooperative Dotty became. Not that the world is perfect. Dotty is still Dotty and she can still be a big pain in the butt.

You see, once I accepted that I needed to communicate and interact with Dotty in her new world she became happier and easier to deal with.

Now, we didn't leave the real world. Alzheimer's World is a combination of the two worlds. In Alzheimer's World it is understood that the person can't remember the now. They can't remember the sentence before this one.

In Alzheimer's World it is perfectly fine if someone asks the same question 20 times in a row.

This is how communication goes in Alzheimer's World. In Alzheimer's World it is perfectly fine if a person says NO 20 times a day. NO does not have the same meaning in Alzheimer's World. In fact, in my opinion NO has no meaning in Alzheimer's World.

Once you start to understand how things work in Alzheimer's World you get calm and comfortable. Once you get calm and comfortable you give off a better "vibe" to someone that has Alzheimer's. If you can get to the "vibe", the person living with Alzheimer's becomes calmer and feels more secure.

Let's put it this way. If you were sent to live somewhere where all the people were purple and they spoke so fast you couldn't understand a word they were saying -- how would you feel?

If you felt like all the purple people didn't like you -- how would you feel all day long?

If you were stuck in this purple world and couldn't figure out how to get out, and couldn't understand how you got there in the first place -- how would you feel?

Alzheimer's World can be a wonderful place. In fact, most Alzheimer's patients are very sweet once you get to know them. They are very appreciative.

Keeping stepping to the left. You'll find the door to Alzheimer's World.

This article is a repeat of an article that was published previously. It ranks in the top 25 most frequently read articles on the ARR, and has been widely shared via on Google+ and Facebook.

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Publisher Alzheimer's Reading Room
Author Bob DeMarco
June, 2011
Title: Rewiring My Brain and Stepping into Alzheimer's World

Original content the Alzheimer's Reading Room


  1. I am saving this for future use. Thanks.

  2. Loretta David5/31/2012 2:06 AM

    Once again, thanks Bob, for your wonderful insight. Today I was in a vehicle with spouse for 6 hours, give or take, driving to 6 different homes, plus 3 pit stops and 1 food stop and the repeated why are we here and where are we going and I knew I should have stayed home (hates househunting, don't blame him, so do I). If I leave him at home he phones me many times, and doesn't like being alone (even if our son is there). Like dealing with a five year old in grown up clothes - Alzheimer's World. Hard to calm down when someone is constantly mean and rude and they always were, hmm.
    Harder yet to find a home when the choice is slim and someone beats you to it, or you think the dementia person can be counted on to help with the decision, and realize you are on your own. Wearing many hats becomes tiring, when you have 2 sick people to deal with, it becomes overwhelming (son has mental health issues, and needy as well as spouse).
    I do the best I can, a lot gets put on the back burner, especially taking care of me with no break. Lucky for you, the support of good neighbours and friends, I am sadly lacking in that department. Spouse had many physical health problems besides the dementia, and always in pain and anxiety. Thanks Loretta

    1. Dear Loretta,

      Please reach out to the Alz. Assoc. in your area - your isolation and frustration are understandable but keeping on by yourself is unsustainable. Are you in a support group? Have you got a mental health professional to help support you in this difficult care-giver role?

      I am an only child (adult) to two parents who are forgetful - mom has AD diagnosis - we aren't going to put dad through testing again but he's on the spectrum of the deeply forgetful as well. I know what it is to be the ONLY ONE with two needy people. Sometimes I have to let the voicemail answer my cell phone and check in a few hours. Sometimes I just turn it off. You have to put yourself first.

      The buttons are going to be pushed - as Bob says here - it is us, the caregivers - who have to accept that the person we love has moved to Alz. World and we will get sick if we are living in REAL World and trying to operate as if in real world when our companion is in Alz. World. We gave to punch our ticket, get in the car, and be in Alz, World with them.

      I try singing in the car - really transforms tension. I make up silly words to familiar tunes or sing the old songs and my parents chime in. I believe 'if you are singing, you must be happy' because sad or angry people generally do NOT SING. You don't have to sing well, in fact, singing badly together makes us laugh and then we are laughing and singing.

      I think you need to take a friend with you to house hunt, leave the cell phone at home, and have a day to concentrate on house-hunting. That's the only way to find something which will work and then figure out how to transition your family to the right place.

      Please please accept all the free services you can find. That's how I have come to enjoy tine again with my parents. There used to be arguments, tears, withdrawal. Very infrequent now, and when it does happen, it's because I forgot to move to Alzheimer's World.

      Good luck.

    Tom & Karen Brenner

  4. The problem I have is that my mom always said "cruel" things to me growing up - it took years for me to know that was part of her - she was a victim of her upbringing and hard childhood.

    But now when she is mean and says the cruelest things - I sometimes am so hurt I have to leave the room for a bit. Because memories of me being 10 years old and being told "You are just so plain looking" still run through my head.

    I love my mom. Tuesday night she was violent. Last night she was sweet and loving - responding to touch and smile.

    I have learned you just have to be flexible with your thinking, your schedule and just go with it. Learn from your mistakes, forgive yourself and keep going.

    Thanks for all you do.

  5. Wow, B.R.M. You are so forgiving and wise.

  6. Dear Bob, I learned so much from you! Truly, the last three years were a "breeze" compared to the first five. Whenever my mom would be mean, I would either agree with her or I would just say "That's ok, maybe you will like me tomorrow." Sometimes I would get a laugh or an equally mean "not likely." The important thing was that I didn't argue or start crying...

    She loved to have her hair brushed...that would end a lot of the negative talk. And if I sang, she would start singing with me and it seemed to break that "trash-talking." I miss her soooo much!

  7. Bob, your wisdom is life changing. My Mom becomes anxious, mean and nasty primarily over the " stolen purse". Or other missing items. Last week we found the ID and Credit card in the bottom of the fresh kitty litter bin! Any suggestions? I would love to see an ask Bob section where others could also respond with what has worked for them.

  8. Bob
    I hope you don't get tired of us saying how you saved us so much grief as caregivers. But its true. My Alz husband and I are both in Assisted Living, so I have things much easier than most caregivers. We spend a lot of time together and at times he devolves into anxiety, rigid thinking, and has been violent in the past. Our Psychiatrist has done a really good job in managing his medicine and keeping him on an even keel, or bringing him back following a episode of being difficult.

    We fully intended to care for him at home, but I lost my equilibrium, descending into a severe depressive disorder, unable to care for myself or my husband. Still, I find so much help from Alzheimer Reading Room. I'm able to take your experiences and lessons and put them into practice.

    The most valuable lesson I learned from you is to enter fully into the caretaker role and be able to move into Alzheimer's world as needed. We are both doing extremely well, for which we thank the good Lord. We thank God for you, and keep you in our prayers.