Jun 14, 2018

Alzheimer's Patients Can't Make Decisions, So You Must Become Their Guide

It is very common for Alzheimer's (and dementia) patients to say No. There is a simple solution to this problem - become a guide, and if necessary, lend them your brain.

"Guides will appear Alzheimer's Reading Room"

By Bob DeMarco
Alzheimer's Reading Room

One thing that really frustrates Alzheimer's caregivers is the tendency for most persons living with dementia to say -


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No, I don't want to take a shower (bath). No, I don't need to go to the bathroom. No, I don't want to take my medication.


I conducted two separate polls in the Alzheimer's Reading Room around this issue. In one I asked,

Did (Does) Alzheimer's rob the person you know, living with dementia, of their ability to say YES to activities?

Seventy three percent (73) of the respondents to this question answered yes. See - Did Alzheimer's Rob the Person You Know - Living with Dementia - of their Ability to say YES to Activities?

I know from personal experience with Dotty how frustrating and disconcerting it can be when a person living with dementia constantly says, No.

Hearing the word  "No"  over and over is not only frustrating, it can cause you to experience feelings of hopelessness. Worse, it might make you "give up" in your caregiving effort.

When a person living with dementia says No, it is not unusual for a caregiver to try to convince them to agree, or say yes. It is not unusual for this to lead to challenging behavior, or a negative episode with the patient. This can lead to a deterioration in the Alzheimer's caregiver - Alzheimer's patient relationship.

The simple fact is, most dementia patients don't like to make decisions. And, trying to convince them to do something doesn't work very well.

Here is simple example of how to become a guide and lend an Alzheimer's patient your brain.

When in a restaurant and looking at a menu you might ask your loved one what they want to eat. You might find that they can't say - decide. This, then, requires you to order for them.

In fact, most Alzheimer's dementia patients really can't make decisions. The parts of their brain being affected by Alzheimer's causes an inability to make decisions. In this restaurant example, you know what the patient likes to eat. You might ask, would you like to order (favorite meal) tonight?

An alternative I liked to use was to give Dotty two choices. For example, would you like to eat linguine with white clam sauce, or fettuccine Alfredo? She usually picked the linguine and clams. However, she sometimes asked, what is fettuccine Alfredo (she no longer remembered). The question would lead to a nice and sometimes wonderful conversation, and often lead to some wonderful looks on Dotty's face.

In this example, you are in effect

lending the Alzheimer's patient your brain. 

You are guiding.

Guiding an Alzheimer's patients can be wonderfully fulfilling. It will certainly lead to better communication, less stress, and can lead to cooperation between you and your loved. This can be a wonderful change.

During the Holiday's you might want the patient to go and visit people, or even take a trip. This requires an Alzheimer's caregiver to become a guide.

It is easier to speak less, explain less, and lead - guide.

So instead of asking if they want to go, you might simply say - let's go. In other words, like you already agreed to go, and now its time.

When Dotty would ask, "where are we going", I would respond in many different ways. But mostly, I said --  to have fun. I would smile, stick out my hand palm up, and get her on the move. This seemed to please her. Mission accomplished once again -- a growing sense of cooperation.

This might apply to the bath, pee, or going out.

Smile -- Hand Out -- Guide.

Once you establish this pattern you get your Alzheimer's patient in motion every thing becomes easier to accomplish. Oddly, they might continue to say No all the way through the process while doing exactly what it is that you want them to do.

It is amazing sometimes, less stressful, and often makes for a good story.

Believe it or not, I have a video where Dotty says No over and over as I gently guide her out the door, into the car, into the pool area, and into the pool.

Amazingly, she continued to say No (I am not going into the pool) even when she has one foot in the water. See - Dotty Explains the Philosophy of NO, and Pinches 11 Bucks. Go down to the bottom of the article to watch the pool video.

Dotty explained to me one day why Alzheimer's patients always say No. She said,

"you know Bobby when I say NO that doesn't mean anything, its just the easiest thing to say."

Wow. What a revelation.

The bottom line here -- you must become a guide.

In order to do this effectively you have to relax and accept this role. Nonverbal communication is the most important variable in this equation. The smile, the outreached palm of the hand, and internal solitude.

From time to time you might also have to lend your brain to the dementia patient. Why not? Two head are better than one.

Two people working together, instead of two people at odds.

It really is kinda wonderful once you get the hang of it.

I got the hang of it after a couple of thousand frustrating moments and stomach aches. I hope this helps you make it happen with less "strain relief" than I needed.

Once you become a guide let me know.

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Alzheimer's Care The Power of Purpose in Our Lives

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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide.

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