By Bob DeMarco
Alzheimer's Reading Room
It is very difficult to understand the loss of memory in persons living with Alzheimer's.This happens because Alzheimer's patients in an early stage can still discuss and remember all kinds of things. Their favorite restaurant, events that took place years ago, names and faces of people they have known for a long time. They can even drive to familiar places like the grocery store, or the doctors office without getting lost.It is not unusual for a person living with dementia to repeat the same question over and over, or to engage in behaviors that are bizarre or upsetting over and over. The sometimes visitor of the patient rarely sees these behaviors and as a result they don't see any thing that is dramatically wrong. So when someone encounters an early stage Alzheimer's patient it is hard for them to believe or understand that they are suffering from dementia.The above includes family members that are at a distance and rarely see the Alzheimer's patient for an extended period of time. This can also include good friends like neighbors.In my case, our good neighbors who are both in their eighties have different opinions on my mother. The wife understands that Dotty is living with Alzheimer's dementia, the husband doesn't think there is anything wrong other than she is "just getting old". I am sure many of you are familiar with the "they are just getting old syndrome".
The older gent, I must say, has really good conversations with Dotty. They can yak away for an extended period of time and Dotty might never evidence any of the disconcerting signs of dementia.
There are good, understandable, reasons why some people cannot see dementia. Some just don't want to see it, denial. Some are fooled by the patients ability to discuss the past and past experiences. The list goes on and on.
What most people don't understand, and this includes new Alzheimer's caregivers, is that when a person is suffering from dementia the brain stops recording new information. The person living with dementia losses the ability to remember what just happened. They can no longer remember the right now, and they never will.The easiest way to understand this is when an Alzheimer's patient continues to ask the same question over and over. If they could remember you already told them, that today is Tuesday, they wouldn't continue to ask you over and over. The Alzheimer's patient becomes like a broken record. Hold on to that thought for a moment.Most of you are probably familiar with the three word test for Alzheimer's. This is a pretty simple test that can indicate possible dementia and identify memory problems.Basically, the person being tested is asked to remember three words or objects. After a few minutes they are asked to repeat the three words. If they can't remember the words this is a "red flag". A variation on this is called The Mini-Cog Test for Alzheimer's and Dementia.In order to understand Alzheimer's and the other types of dementia you really do need to gain a good mental construct of what is happening. Here is how I came to envision what was going on when a person living with dementia begins to lose their memory.Most of you are probably familiar with records (think music). The old kind of records that were made of vinyl. In the old days, you would take a record, put it on a record player, put the needle on the record at the beginning and play it.Sometimes when the needle reached the end of the record it would stick instead of returning to its stand. When the needle stuck at the end of the record the sound coming out of the record player would be all static, and the sound was very disconcerting. The sound was so disconcerting that the typical person would become exasperated, then jump up and fix the problem. Do your remember that sound?So when a person begins to enter a state of dementia, the record in their head stops. And in some cases in my opinion, not only does it stop, it gets stuck in the "static" position. I want you to imagine two things.First, you can no longer remember what just happened. From this point on in your life you can't remember anything that just happened. Your brain is no longer able to record and hold your experiences. You have no new memories or experiences. Think about it for a minute. How does it feel to think about a life where you have no new memories and you can't remember your experiences. I think you will find that thinking about this is very disconcerting. In fact, I am willing to guess that most of you won't think about this for more than several seconds because it is just to difficult to imagine.Now get up and go look at the person you know that is living with dementia. Take a good hard look. Think and understand that the person you are looking at has no new memories, and no new experiences that they can remember.Second, for those of you that have an Alzheimer's patient that is particularly difficult to deal with. Patients that are mean or angry, ask gut wrenching question like where is my husband when he is already deceased or sitting right in front of them, that evidence particularly difficult and disconcerting behaviors like sundowning, or just do things that drive you nuts.Ask yourself this, is it possible that the record I described above is stuck in the static position. The recorder in their brain stopped playing, and the needle did not return to the carriage. None stop static is playing in the head of the person living with dementia. I don't mean the same kind of static you would hear from the record, I am talking about a kind of cognitive static in the brain that just won't stop. Is it possible that this cognitive static is causing the person living with dementia to be all "wild and crazy". If so. Is it, or would it be possible to return the needle to its carriage? Is there a way to do this?For right now, I would ask you to take a good hard look at the person living with dementia as you think about what I am describing in this article. Specifically, I want you to look at them and understand they no longer have the ability to remember the right now, and they no longer have the ability to remember new life experiences. Their brain has stopped recording and the record machine is broken.And then, I would like you to think about and consider what this must be like. What would it feel like if it were you?The tendency here might be to get depressed or sad while thinking about this. That is okay. However, I want you to consider this, once we fully understand this we are likely to be a more effective, caring caregiver. You see, we cannot change what is, we cannot change the past, but we can change that future together and this is exactly what we are going to do together.Understanding how Alzheimer's affects the brain, understanding that the brain is no longer recording memory and experience is difficult to accept and swallow. However, it is necessary to do this on the path to Alzheimer's World.I am sure others will agree, Alzheimer's World is a kinder, gentler place. At times a wonderful place.I'll continue this article later after you have given this some thought.