Dementia - When memory fails...
In the media and in specialist books, there is often talk of people suffering from dementia. This refers to people suffering from the disease dementia, which is associated with memory loss. It is a disease that both shocks and warns, and leaves many unanswered questions. In the large topic area of dementia, Alterix explains this disease in more detail.
We avoid talking about "dementia patients" in the following. Instead, we refer to "people with dementia. This is because we are reluctant to reduce people to diagnoses. After all, we humans are always more than just a sum of diagnoses. People with dementia are also mothers, fathers, daughters, sons, professors and doctors as well as housewives, steelworkers, pub owners and much more! Their personality is more than a diagnosis.
People with dementia are mostly old people! This means that they are people with a lived biography:
They have had a profession with which they more or less identify.
They have or had their own family.
They have loved and were loved and still do.
They have raised children, built houses, cared for parents, rebuilt the country after the war.
They have been poor or rich, happy and sad, healthy and sick.
They have lived in relationships, been active in churches and associations.
They had and have a meaning that goes beyond a diagnosis.
It is our endeavor that people are seen in their total personality. Reducing people to a diagnosis simultaneously reduces them to deficits and completely ignores the fact that people with deficits also have their resources and that these must be used and maintained as long as possible. Of course, resources also decrease with time! This is the case with every person - with or without dementia.
To reduce people to their diagnosis means to take away their comprehensive meaning! And that in turn means taking away their dignity. If we still see the person behind what the diagnosis makes of people under certain circumstances, who he/she was before the dementia, then we will be able to provide support and care for these people in a dignified and truly respectful way. Taking them seriously in their "personhood" must be the goal: To look at their personhood beyond dementia and to see dementia for what it is. Namely, the disease is a condition that develops gradually; sometimes faster, sometimes slower, with similar symptoms in very different people who all have their own stories. This gives dementia many very individual faces, and this view of dementia helps to meet people with this disease adequately and individually.
Dementia - How the person changes
"When old age comes, the head becomes full of holes," my grandmother used to say. She turned 89 and when she said that, she was 75 and her dementia was just beginning. In the beginning, she would forget this and that, there were little notes everywhere with reminders, like on the door: "Stove off? Keys? Teeth in?" That's what it really said.
At some point, the notes were no longer enough and she couldn't manage without help. She forgot everything she had learned like hygiene, using cutlery, using the toilet, picking out clothes that were appropriate for the weather, and more. This was irritating for us as a family, because my grandma was otherwise very "clean"; always elegant with a hat matching her handbag. And now?
She simply no longer knew that she had worn a hat for half her life, that she had used a fork or a spoon to eat, how she had used the toilet and how important hygiene and cleanliness were to her. Her eating habits also changed massively. She no longer wanted to eat anything solid and it was only when she had soup and pudding that she would reach for it vigorously.
I could go on for pages. Everything changed for my grandma and for us as a family, too. From the elegant little old lady she always was - proud and dressed up, always polite and reserved, very concerned about her outward appearance - she became a needy, dependent person who completely disappeared in her world. She was not always friendly, especially when she felt patronized. She was anything but "low maintenance." And she was headstrong as before. Her character traits hardly changed. Rather strengthened and this in an unpleasant way. She no longer hid behind social conventions that had always been so important to her. She was undisguised and completely herself. And that more and more, the more the dementia progressed.
What awaits you on the following pages
Since we at Alterix take a holistic approach to the topic of dementia, we present it to you in detail and from a variety of perspectives. On the following pages, the following components of our rich knowledge vault await you:
What dementia is: A linguistic & medical classification.
Here we look at the origin of the word dementia:
- What does the word itself mean? And what does it mean for the view of dementia and people with dementia, and consequently for the more or less adequate treatment of affected people?
- Forms of dementia: What is the scientific basis of the disease?
- About subdivisions & classification of dementia: What are the possible implications? What might an exemplary course look like?
- Where does the disease come from in the first place? Genetic factors, environmental factors, stress, drugs, alcohol, etc.
- Treatment of dementia: What is offered? What promises success? Are there possibilities of prophylaxis?
Dementia in everyday life: The person and his environment
Further we dedicate ourselves to the important point, how the person with dementia as well as its surrounding field deal with the challenges resulting from it. First of all, we will take a look at the effects on those affected:
- What does being demented mean for those affected?
- What effects does it have on daily life?
- How does social participation work?
- What is becoming more difficult, what is not?
- What do people with dementia need and what do they not need?
In the further course, we naturally also take a closer look at how relatives, companions, circles of friends, acquaintances and caregivers deal with the challenge of people with dementia?
- How does the environment perceive people with dementia?
- What misunderstandings arise?
- How does the relationship between children and their parents with dementia change?
- What can be beneficial?
- What about the "legacy" of the parent-child relationship?
- What can the environment do for people with dementia and what must it do for itself?
This part is also about relationship levels and finding the best for all involved - accordingly you will find a section on "self-care".
What to do: About different approaches & ideas for dealing with people with dementia
Since many family members are overburdened and want professional help for those affected by dementia, we present the options for this:
- Different living & care forms as well as their advantages & disadvantages.
- What support is required so that affected persons can remain at home alone?
- Does the respective person have to go to a home? If so, what support is needed there?
- The dementia shared apartment: New hype or real alternative?
We will also look at how people with dementia can be helped to experience trust and familiarity even when they are forgetful. In this context, we will also take a closer look at "challenging behavior":
- How does challenging behavior such as yelling, hitting, kicking or spitting occur? What does the night and the past have to do with it?
- Why does a person do what they do, and what can I do at this point?
- How do I meet people with dementia with appreciation and at eye level?
- How do I give trust and ensure familiarity?
Are you ready for an important trip?
We at Alterix provide you with this great topic, whereby it can help you on various levels. On the one hand you will expand your general knowledge, on the other hand you will get valuable advice, if you are in a similar situation yourself. Even if the topic has hardly touched you so far, it is still worthwhile to read in here. This way you will be able to better understand many people with this problem and contribute to their well-being. One thing should be said at this point: dementia is anything but a marginal phenomenon and very present in society. Are you ready for an important journey that will make you look at the subject from a different perspective?
