Featured Article: Caregiver Life - Why Do We Try and Make Alzheimer’s Patients Act Normal?
By: Bob DeMarco | Alzheimer’s Reading Room
There is a tendency for caregivers to try and make Alzheimer’s patients act the way we do - in our own real world. In a sense, to convince the dementia patient that what they are doing is wrong, and they shouldn’t be doing it.
There is a strong tendency for Alzheimer’s caregivers to assume that they can’t do anything about the often “odd” behaviors that dementia patients engage in.
If you read message boards on the Internet you will find that caregivers often complain about these sometimes challenging behaviors to anyone who will listen. This practice is often referred to as venting. Blowing off some steam.
A very common practice for caregivers, we all do it.
As a result, caregivers often come to the conclusion that nothing can be done about these strange, sometimes mean, behaviors that dementia patients engage in. As a result, caregiving becomes both stressful and burdensome.
• If we view the behaviors of Alzheimer’s patients from our own “real world” perspective they do seem dysfunctional.
• They often make us feel angry, confused, and lead us to the conclusion that there is nothing we can do about it.
On the other hand, if we come to the realization that many of these behaviors are common to Alzheimer’s patients we might come to the conclusion that the brain of a person living with dementia functions differently that ours.
It seems to me that Alzheimer’s patients live in a different world much of the time. I call this place Alzheimer’s World.
There is a tendency for caregivers to try and make Alzheimer’s patients act the way we do - in our own real world. In a sense, to convince the dementia patient that what they are doing is wrong, and they shouldn’t be doing it.
Lets assume for a moment that I told you all day long, day after day, that what you are doing is wrong. That you are wrong, and I am right all the time.
Would you like me? Would you be more likely to cooperate? Or, would you get angry and as a result conclude that there was something wrong with me?
One of the first things dementia carers must do is to start looking at the world from the viewpoint of the dementia patient. Why are they doing what they are doing? Why do they act the way they do? And, why do they continually engage in behaviors that make us sad, angry, and confused?
The answer to this is quite simple. Because they can no longer store the right now in their brains and this often causes dementia patients to become confused. Bent out of shape if you will.
Imagine for a minute how you might feel if you were constantly confused. Do you think you would be nice to those around you, or do you think you would be mean?
Alzheimer’s patients tend to do the same things over and over. They even do them around the same exact time of the day.
One example, Alzheimer’s patients tend to get angry and mean if you leave them alone for an extended period of time. They tend to feel abandoned by you. This happens because Alzheimer’s patients have no real sense of time.
If you go out for a while, or hours, the Alzheimer’s patient might assume that you are never coming back. Once they assume this, the internal angst within them grows. By the time you get back home they are already at the boiling point, and you are the one that gets to suffer their wrath.
You might conclude that it is unfair for them to be mean to you. But, that misses the point. The point is why are they feeling they way they are feeling? Why?
Now as a caregiver you can blame them for feeling the way they are.
After all, it is really unfair for anyone to treat you like this in real world. Aha, you are operating in real world.
In Alzheimer’s World dementia patients cannot be left alone. Not past a certain stage in the progression of the disease. They cannot be left alone.
Of course, you can leave them alone and then incur their wrath. This is going to happen every single time.
Who is to blame?
Is the Alzheimer’s patient to be blamed?
This fear of being alone, and abandoned, is a common symptom of all dementia patients. Being left alone will cause the dementia patient to be mean, challenging, and downright impossible to deal with at times.
Are you to be blamed for leaving the Alzheimer’s patient alone?
Yes. Why? Because you are refusing to accept the simple fact that a person living with dementia feels, lives, and operates in the world differently than you and I. They live in this other place, Alzheimer’s World.
Simple really. They can’t come back, so you must go in - into Alzheimer’s World.
If you do, you will soon learn that most of the behaviors that are driving you ‘crazy’ are in fact normal behaviors in Alzheimer’s World.
It is at this point you will realize that “you can do something”.
This something is substituting new activities that Alzheimer’s patients can and willing engage in. Examples include: exercise, music, painting, and activities they enjoyed before the onset of dementia.
In order to improve the behavior of Alzheimer’s patients you must keep them engaged all day long. If you ignore them, you will suffer their wrath. If you leave them idle for long periods of time, you will suffer their wrath.
Of course, if you do this or leave them idle for long periods of time you will be proven correct - you can’t do anything about it.
Bob DeMarco is the Founder of the Alzheimer’s Reading Room (ARR). The Alzheimer’s Reading Room contains more than 5,000 articles and has been published daily since July, 2009. ■