Advanced stage dementia
In the last article, we took a look at how dementia begins and how those affected can cope with it. Here, comparatively speaking, many things still go smoothly and those affected are relatively independent. But how does it look in the further course? This is the topic of this article at Alterix.
What happens next...
After the initial stage, dementia progresses. Here it becomes increasingly obvious that many things in life no longer function as usual. It is now no longer the small forgetfulnesses - appointments or names - that are forgotten. People who were always very concerned about cleanliness and personal hygiene gradually appear unkempt and somehow scruffy.
At the beginning of this process, which is also reflected in eating behavior, general cleanliness, daily organization, taking medication, sleeping behavior and continence, etc., routines in particular take effect here, in addition to coping strategies. For a while it still works that things are simply done as always, as usual and out of habit. As dementia progresses, more and more of these habits are lost and lose their meaning. Then you will find with those affected that life in the usual ways is now impossible.
Help is needed and this in turn presents you with new challenges; in many more areas than just organization! There are care services, day cares, the family may also be able to help. You may even decide to take your loved one into your own home or you may seek suitable placement in a care facility. In either case, there will be changes and the person may not let them go without resistance. A home care service may be perceived as an invasion of privacy and threatening, day care may not turn out to be the right thing, and vacancies in facilities that seem suitable for people with dementia are also not so numerous that truly free choice would be possible.
This phase is very often - I would even say in the majority of cases - accompanied by a pronounced lack of understanding on the part of the person affected in their dementia-related events. Help is refused because the self-image is completely different from the one observable from the outside. You may remember a keyword from the previous article: Self-defense program. One's own autonomy is defended, no matter what the cost! Just in this phase this mechanism is very strong.
In my opinion, this is due to the following: People have very well a feeling for the fact that things happen which they cannot influence any more, they feel it as a threat and as losses, very profound losses! They also feel that they have nothing to oppose this happening. This momentum must actually drive a person crazy! Moreover, they increasingly lack the intellectual means to react to the situation. And then happens what we already had at the beginning - it is compensated, only that the coping strategies lose their effectiveness, because they are simply less and less thought through. And - last but not least - people forget that they forget. They feel completely unjustly "accused" of doing things wrong or not doing things at all. The question "Have you showered yet?" can be answered with full conviction with "Yes, for sure!" because here' s what happens: Showering is - so the person hears it - somehow part of something I'm supposed to do. And here's the kicker: I may not even remember what showering is supposed to be, but it's obviously important to my daughter and I have a lot of emotional associations with her-so I showered! Or eaten... Or took my pills... That was the requirement, after all. And I have always fulfilled the requirements for me. I can, of course, reign annoyed when I don't remember and can't admit that because I'm not aware that I don't remember. Or because I am simply embarrassed that I obviously don't understand something anymore.
You understand what I mean...
Probably there are always several things that take effect at the same time. Here, too, the following applies: The process of deterioration and the way people with dementia deal with their increasing deficits is individual, not linear and sometimes a gradual process, sometimes in spurts. Of course, many components play a role in this process, such as the daily form, the relationship to each other, the previous strategies in crises and, in any case, the character of the person affected. We will deal with many of these things in the next part when it comes to the adequate handling of people with dementia.
In this phase of dementia, many things come together. What has been learned is gradually lost, as is short-term memory, words lose meaning, language becomes blurred, motor skills can become unsteady, and the risk of falling increases. Eating becomes less important, as do excretions, personal hygiene, etc. This is steadily increasing, and there is no cure for it in the usual sense. What I always advise, however, is resource-oriented action: We know that something is lost, but by letting people use their resources, we preserve what is still there as long as possible, and thus autonomy and dignity!
In the professional literature dementia is also divided into phases, these are described similarly as I do here! However, I do not see these phases as strictly consecutive with a fixed order. The "last" phase is often described as the one in which people only vegetate apathetically and no longer establish any contact with the outside world. I have seen people with dementia in this state myself, however, I must confess: I consider this state to be avoidable. However, this is already a prelude to the next part, which will deal with how people with dementia can be given an end of life in dignity and self-determination. Just this much: I believe that dignity and self-determination are THE keys for everyone to live a happy life. The question is how we can develop such a deep understanding for changing people that their companionship in the last few meters of their lives is satisfying and worth living for both sides.
How can this be done? More about that in the next article...
