Dementia in the early stages
So far, we have gained an overview of dementia in terms of definitions and different forms. In the following, we will look at what dementia means for those affected in everyday life.
We all associate dementia primarily with "forgetting". This is not without reason, because forgetfulness is one of the first noticeable symptoms. Before it is noticeable, however, a lot has already happened!
It starts with the fact that the affected person cannot remember small things. Names of acquaintances are no longer remembered, telephone numbers, house numbers, appointments, dates are forgotten. At first, this is less noticeable. After all, it can happen to anyone, right? But then the oversights and the forgotten appointments accumulate and perhaps one thinks now still: "Ok well, that is perhaps stress or well - the nut/mother becomes simply old...".
Those affected are actually the first to notice that something is wrong! They feel ashamed and infinitely embarrassed about what is happening to them all the time. At this point, we move on to the next phase of the disorder: People try to compensate! They develop strategies - called coping strategies - with which they try to conceal their forgetfulness. You might walk into your mother's apartment and there are sticky notes everywhere: "Lights off?", "Turn off the oven", "Keys packed?", "Windows closed?".
This works quite well for a while, making it a suitable tool! "Oh," you may be saying now, "I need a memo for everything, too." Yes, you're right! So do I. But unlike what happens in dementia, your and my forgetfulness pages are not steadily becoming more and more existential!
At this stage of dementia, when many things are already forgotten, people can live quite well on their own thanks to their coping strategies. If then still someone is there, which or which cares from time to time, that goes well. However, the following already applies here: Too much should not be taken away from those affected. This is counterproductive. Do things together with those affected and support them! But keep your "hands in your pockets" as long as possible. More on this later...
What is actually inevitable now, if you notice that coping strategies are being used, is a visit to the doctor. At the latest here and now it is time to have a look if there are dementia-related changes taking place. Here the following is important: The affected person will possibly deny and refuse a visit to the doctor. This is completely normal.
First of all, the realization that much is being forgotten and that perhaps things no longer function in the same way is painful and, above all, fearful; fear that this is really dementia. Fear with the many images in the head that then arise: Old people wandering alone and distraught, drooling, across nursing home hallways. At first, those affected can't do much about the fear, which is often rather diffuse. However, the fear is in any case one more reason to go to the doctor. Only in this way can unfounded fears be invalidated and well-founded ones be given a face to look at! Fear that we face is smaller than fear that we try to run away from. Most of the time, fear is faster anyway and overtakes us, thus becoming more powerful and seemingly insurmountable every time.
Another reason for not wanting to see a doctor is an attempt to deny the obvious. What must not be, is not, and if we don't talk about it, it doesn't become real! This is a deeply human mechanism. We all do it in certain situations. According to Kübler-Ross (see excursus below), denial is one of the first impulses that take effect in the processing of crises - and the suspicion of dementia is certainly a crisis for all involved!
It can also happen that a visit to the doctor is vehemently denied and it comes to a dispute! That you experience a form of aggression with the concerning, which surprises you, is quite possible. Here I am always careful with the evaluation of such reactions. After all, a possible dementia calls a lot into question. What will become of me, what of my relationships, even outside the family? What about my hobbies, my everyday life, my being? These points make aggression in this context human.
As soon as such fundamental changes as in the case of an incipient dementia are noticed, something like a "self-defense program" develops in the person. Every millimeter of autonomy is fought for, with all one's might and not always fairly. Then every offer of help from the outside feels first and foremost like interference, like being patronized. It's not an easy situation, and depending on your temperament, the sparks can fly! The whole situation is connected with so much insecurity, but this is no wonder.
Furthermore, certain changes of character are part of dementia from the beginning. Social conventions fall and sometimes you get to know sides of the affected person that surprise you.
An example: In a WG for people with dementia where I worked, there lived a lady. She was a teacher and had expressed herself very selectively and decidedly all her life, and this was still noticeable in the shared apartment. But in situations that made her uncomfortable, like showering or cutting nails, she could curse like two coachmen! The daughter was totally horrified and said that such words had NEVER crossed her mother's lips! Well - the lady had forgotten her upbringing and social conventions besides many other things. They were no longer valid and so she could express her feelings completely undisguised. And how she could do that!
This blurring of certain boundaries starts very early, so I could observe that. One reason, of course, is the insecurity that comes with the noticeable changes. But above all, certain rules simply no longer play a role. Dementia is existential, people are thrown back on themselves and their primal innermost! Then it is to be judged differently in the dementia, as if a person, who was known as gentle, suddenly loses all composure. Behind everything, however, there must always be the question of why a person does what he does and what about the situation has led him there; in other words: aggression evaluated as challenging behavior makes us ask what we have to change about the circumstances of the environment and adapt to the affected person so that they no longer need this behavior.
The promised little digression
Elisabeth Kübler-Ross (b. July 8, 1926 in Zurich; † August 24, 2004 in Scottsdale, Arizona) was a Swiss-American psychiatrist who primarily researched and wrote extensively on dying, death, and near-death experiences. One of her best-known works is "Interviews with the Dying." Her great concern was to bring dying and death into life, to create an awareness that life is finite and should be shaped to the end. She had noticed that there was (and certainly is) great fear of contact with the subject, also and especially on the part of doctors, and that this causes a lot of suffering and speechlessness on both sides. One of her sentences that made the most lasting impression on me was in response to the question of what to do when a patient is afraid of dying: "Do your own business, then you can help!" In other words, take care of your own attitude toward dying and death first, then you can talk about it with those affected.
The phases mentioned above are often referred to as "the 5 stages of dying" or "the 5 stages of death," which is certainly only partially true. Kübler-Ross described in the 5 phases how the processing of a fatal diagnosis can proceed. However, her model has relevance to all types of crisis management. Not solely for the news of a terrible illness or impending death.
The phases - simplified - are as follows:
- Denial
- Anger
- Negotiation
- Depression
- Acceptance
Kübler-Ross depicted them in a spiral and thus described the dynamics very well. The individual phases do not take place orderly one after the other, but wildly mixed up, sometimes even several at the same time and one or the other again and again, when 1 already thinks it is over.
More about the individual phases...
Denial means "not wanting to admit": "That can't be!" "Let's get a second opinion!" "Oh, it must be a mistake!".
Anger means being angry at everything and especially at the disease. No one is spared, there is raging and clamoring and fighting! Very much and very passionately is fought. What are they fighting about? That everything should go back to the way it was. That the situation should not be hopeless. Fighting means not giving up. Unfortunately, relatives, friends and girlfriends often suffer greatly in such moments because they become lightning rods.
Negotiating means always coming up with new ideas on how to avert the whole thing after all. Or how it could be changed for the better... Or maybe another doctor has another idea! Or another clinic? Or maybe the whole thing was a mistake after all?
Depression in this context is actually not depression in the clinical sense and the word is a mistranslation. Depression translated from English in this case means "deep" or "crisis"; "melancholy" would also fit. These are all symptoms of clinical depression as well, of course, but that is not what is meant here. In the clinical sense, depression is a disease in its own right, which must be treated therapeutically and which does not just mean "sadness". In the context of the "phases" according to Kübler-Ross, it means the deep sadness that can accompany a crisis, but does not have to. Of course, depression can arise from this phase and this is not uncommon- when the affected person is alone, for example. What is meant here, however, is mourning over the situation that has occurred. This can be a very deep and melancholy grief, combined with a feeling of hopelessness and futility. With luck, this is a time of weeping, because crying relieves and helps with letting go.
Acceptance, if one is lucky, is the final phase: accepting the unchangeable, acquiescing. Kübler-Ross has a very constructive approach to the term acceptance at this point. For her, real acceptance means accepting the situation and shaping it from now on. No giving up; instead an accepting and making the best out of the situation at the moment is meant.
All these phases do not run in any predictable order. It may be that anger comes first for one or the other. Or negotiation. In many cases the phases mix and whoever negotiates, denies at the same time, or whoever denies, becomes sad and melancholy at the same time. Anger and depression alternate as well as denial and acceptance! Yes- also acceptance does not have to be a final state and most of the time it is not. As long as the crisis lasts, people will be in phases described above. Life is dynamic, so are the phases of crisis management!
Conclusion
This article shows - illustrated once again with the help of the 5 phases of dying - how far dementia already circles in the early stages. However, at least in practice, it is still possible to live with the disease to a certain extent. Independence is also maintained for a long time. But at some point even that is over, which brings us to the advanced stage. You will learn more about this in the next article.
