The Dementia Etiquette Manual E-Book

Markus Proske

• Herausgeber: Corporate Minds GbR
• Kategorie: Fachliteratur
• Sprache: Englisch
• Veröffentlichungsjahr: 2021

Beschreibung

Dementia e-book from practice for practice: immediate help for everyday lifeThe Dementia Etiquette as an e-book: this dementia guidebook offers caregiving relatives and those working in care concrete immediate help for difficult situations in everyday life and in dealing with dementia patients. The author, Markus Proske of Dementia Competence, has been working as a dementia consultant and humor therapist for over 15 years. He conveys his experiences in a practical way in his first book a kind of reference book with practical recommendations for action and explanations, which enable a better understanding of the disease and better interaction. Now also available in a Polish edition for further education in professional care.Demenz E-Book aus der Praxis für die Praxis: Soforthilfe für den AlltagDer Demenz Knigge als E-Book: dieser Demenz-Ratgeber bietet pflegenden Angehörigen und in der Pflege tätigen Personen konkrete Soforthilfe für schwierige Situationen im Alltag und im Umgang mit Demenzerkrankten. Der Autor, Markus Proske von Demenz Kompetenz, ist seit über 15 Jahren als Demenzberater und Humortherapeut tätig. Seine Erfahrungen vermittelt er praxisbezogen in seinem ersten Buch eine Art Nachschlagewerk mit praktischen Handlungsempfehlungen und Erläuterungen, die ein besseres Verständnis der Krankheit und ein besseres Miteinander ermöglichen. Nun auch in polnischer Auflage erhältlich zur Weiterbildung in der professionellen Pflege.

Leseprobe

Original printed edition published by corporate mindsFrankfurt/Main, April 2018

@2020 by corporate minds,

Claudia Schäfer und Petra Hermanns GbR

Löwengasse 27 B, D-60385 Frankfurt am Main

Editorial office

Daniel Oliver Bachmann

Susanne Van Volxem

Typesetting and design

VON·WEGEN Kommunikationsagentur,

D-60385 Frankfurt

ISBN 978-3-9819730-3-7

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Foreword by Okka Gundel

When I told my friends in 2012 that I was volunteering for the Alzheimer Research Initiative e.V., I looked consistently in amazed faces. What’s the matter with you? That was the big question. The answer was easy for me: Because people who have a long life behind them must not be regarded by our society as worthless and written off. We mustn’t forget the old ones!

At that time I was pregnant with my third child. The beginning of a new life was imminent. The contrast could not have been greater. But the subject of Alzheimer’s had a certain fascination since my grandmother fell ill with it. That was in the late ‘90s. With her I experienced many curious situations. My mother, unable to accept for a long time what was happening to her mother was horrified. The grandmother, who as a war widow had mastered her life with courage and bravura and now conversed with a chocolate Easter bunny and ordered daily new and expensive wines for guests who would never come.

I have not let go of these experiences. At that time dementia was still a ­taboo subject, the sick was stigmatized, one was left alone with oneself, the sick loved one and despair. Ignorance and uncertainty are sometimes difficult to bear. I would have liked there to have been a book like this.

The psychiatrist and neuropathologist Alois Alzheimer discovered the ­disease of oblivion well over 100 years ago. Even today there is no cure in sight. The biggest risk factor for dementia is age, and as we get older, it affects more and more people. ­Dementia threatens to become a widespread disease. Friends who looked at me irri­tated at the time want answers today. Over the past few years, there has been an enormous increase in awareness of this clinical picture. Like a virus, the disease spreads, which causes so much fear because it has something sinister about it. And so absurd. The sick look the same as always, but behind the familiar façade they lose control of their lives and themselves.

For me, the issues of Alzheimer’s disease and dementia have become a matter close to my heart. It is important to treat the patients with dignity. With dementia patients the memory disappears, but the feelings remain!

A personal word at the beginning

Dear Reader,

For me as a dementia consultant and humor therapist, the “illness around forgetting” is my daily bread. Two of the most frequently asked questions are “Where does dementia come from?” and “Can I do anything about it?”

Unfortunately, science still knows very little about this disease. That is why dementia is for many people the terrible disease of our time. It can not only meet everyone, but also ensures that more and more people have to look after their dementia relatives. In the summer of 2017, the Federal Family Ministry expected more than 1.5 million dementia patients. In addition to care at home, these people are cared for by around 12,000 nursing homes with over 800,000 fully inpatient nursing places and 13,000 outpatient nursing services. When the book is printed and you hold it in your hands, these numbers will have risen rapidly.

I am not a scientist myself, but I have been working as a dementia consultant and humor therapist for over 18 years. Almost every day I deal with the question of how we can better understand and comprehend the behaviour of people with dementia. When those affected feel that there is so much “going wrong”, “funny” all of a sudden, that they really believe they are going “crazy”, they begin to compensate for their strong negative emotions. In doing so, they build a new reality for themselves. These can be difficult and tedious for relatives to understand and lead them to their limits. The result: caring relatives are up to twelve times more likely to develop dementia themselves.

The dementia etiquette is the result of my many years of practice in dealing with patients, relatives and nursing staff. Here you will find answers that prove themselves every day. They should make life easier both for you and for those affected. I wish you a good read,

Your Markus Proske

How to get the most out of this book

Why an etiquette about dementia?

“Because in my lectures I am repeatedly asked how to deal correctly with relatives” and “Even the nursing staff is burning the nails” – these are the answers.

What is “right” is not always easy to judge. People with dementia change so much that we have to adapt our dealings with them to these changes.

Baron Adolph Franz Friedrich Ludwig Knigge was born more than 260 years ago. His last name is equated with “right behavior.” So it was obvious to name the present book with practice-oriented advice on everyday life with dementia patients accordingly. Like Adolph Knigge’s work “Über den Umgang mit Menschen” (On Dealing with People), the Dementia Knigge is designed to help you cope better with critical situations.

If there’s “right” behavior, is there “wrong” behavior? I don’t think so, so the book never lifts the index finger. Instead, with numerous practical examples from the eight most important areas of life of people with dementia, it shows how you can help people to help themselves and thus also make your own everyday life easier.

You can read the book from front to back to acquire a basic knowledge for the correct handling of dementia patients. Each chapter first describes a ­typical situation. A dementia etiquette tip tells you how you can behave – if things have to go really fast. In the following explanation you can read which measures are suitable in the respective situation. Finally, the “Background knowledge” section explains the causes of this behavior. Instead of reading the whole book, you can immediately look up the appropriate situation from the area of life in question.

Another way to find information quickly is to consult the glossary, which ­explains common (medical) terminology that you will encounter regularly in ­interaction with doctors and nurses.

It is best to keep your dementia etiquette close at hand – then you will always be well informed.

Chapter 1 – First signs of dementia

“Is it time now?” – What to do when the first anomalies occur

“Is it time now?” – this question is one of the most frequently asked by relatives. A relative, a friend or an acquaintance has shown “abnormalities”. Now the great fear stands in the room: Is it time now? Is that Alzheimer’s? Does he have ­dementia now?

So much has been published about dementia in recent years that even ­experts are unable to study the publications. However, there are hardly any practical instructions like the dementia etiquette you are holding in your hands. This may be due to the general uncertainty about the definition and course of the disease among the experts themselves. If we know so little, the tenor is, how can we give practical tips?

I dare to do this because I deal with dementia sufferers on a daily basis and have done so for many years. Nevertheless, I don’t want to understand my proposals for solutions as being valid on their own. Dementia is individual and therefore the approaches are diverse. However, certain rules have emerged which I would like to recommend to you.

Let’s say your mother’s been getting a little weird lately. She was thrifty throughout her life, every penny, every cent was turned upside down several times before it was spent. Now your mother seems to have lost all connection to money and is spending her savings on unnecessary things without hesitation. Even if your grandchildren might benefit from it, they are not at all comfortable with it. Especially since you have read that people with dementia often become stingy or show the blatant opposite. Could it be that the changed behavior of your previously so thrifty mother indicates the onset of dementia?

THE DEMENTIA ETIQUETTE Tip

First keep calm and exclude all other causes before using the term “dementia”.

How to react best

Let us start with what is written: “People with dementia often become stingy or show the blatant opposite.” This apparent contradiction shows the individual course of the disease. The fact that someone suddenly throws money out of the window or remains sitting on the purse is by no means an indication of dementia. Even in the case described above, it may simply be that your mother has a problem with counting. I therefore advise you to observe them: When shopping, does she only pay with banknotes and put the change away without counting it up? Does she always choose an extra-large bill to be sure that the cashier cannot react with the words “That’s not enough”? What does she do with the small change, the value of which she is no longer able to assess? Maybe that’s why she’s giving it away?

If someone is no longer able to count, this can be an indication of a ­cognitive change in the brain. But before the sentence is passed as “dementia,” I would first go with my mother to the eye doctor. Perhaps there is only a restriction of vision, which leads to the fact that it cannot recognize the numbers on the coins and notes correctly any longer.

Background knowledge

We distinguish between primary and secondary dementia. Primary dementia is a degenerative, irreversible change in the brain. Alzheimer’s dementia is such a primary dementia. It’s the most common. Secondary dementia is a state of confusion caused by diseases, stress factors or other stresses such as polypharmacy. It’s partially reversible. An examination by an expert, preferably in a memory clinic, can clarify whether the patient has primary or secondary dementia.

It also determines how healthy a person really is, or which diseases he or she already has. Only when secondary dementia can be excluded do further tests show whether primary dementia is present. Even here, the doctors will be cautious in their testimony. It has been found that dissected brains are generally no different from healthy and dementia elderly people.

“What have we done wrong?” – Confusion after a hospital stay

Actually, you’re satisfied with the way things are going: Although your father died recently, your mother still lives at home and takes care of herself. “As best she can,” you say to friends and acquaintances who ask about it. “Let’s knock on wood so it goes on like this for as long as possible.”

One day your mother complains of pain. What kind of pains they are, she cannot properly express. “It just hurts,” she says. The general practitioner also has no idea what to do and does what doctors do in such situations: he advises that your mother be admitted to hospital for a few days. He’ll know what he’s doing, think about it, a few days in the hospital to check her out will do her good.

Unfortunately, that’s not the case. When your mother comes back from the hospital, you hardly recognize her. She’s completely changed and clearly confused. She suddenly defecates her pants and no longer recognizes her family members.

Of course, you’re horrified. What happened? you ask yourself, is mother now also suffering from dementia? The very next day, you’ll see your family doctor. There you have to wait with your mother the usual time until it is your turn. The family doctor asks his assistant Mrs. Maier to subject your mother to a “dementia test” the so-called clock test.

This test is very popular with general practitioners because it is easy to perform. The results are quick – but one has to be cautious. Mrs. Maier hands the mother a sheet of paper with a circle drawn on it and asks her to depict the time at 10:20 a.m. with the help of painted hands and to add the missing numbers. Optionally the sheet of paper is completely empty, then the clock itself must also be painted. Her mother reacts confused, she does not understand what she should do. For the family doctor, the diagnosis is clear: “I’m sorry to have to tell you this, but your mother is actually suffering from dementia.”

THE DEMENTIA ETIQUETTE TIP

If confusion occurs after a stay in hospital, wait and see. Often it is a transit syndrome, which fades away after some time again. Accompany your relatives to the clinic next time. Most hospitals offer a “Rooming in” (extra bed). In many cases such a delir can be prevented.

How to react best

The state of confusion can disappear again if you slowly and benevolently lead your mother back into everyday life at home.

Avoid hospitalization if possible.

Background knowledge

A visit to the doctor is usually very stressful for old people. The waiting, the tension, a test situation – and on top of that, on such a day people often don’t drink enough. Such a thing can quickly lead to a falsification of any test results.

A so-called delir – also called “transit syndrome” – is a short-term cognitive change in the elderly that often occurs during hospital stays. You can imagine it that way: Your mother knows her way around at home, but in hospital she feels alienated and helpless. In addition, there is the influence of drugs such as tranquilizers or perhaps even an anesthetic. The atmosphere in a hospital is often marked by stress and thus also contributes to delirium.

A delir occurs in about 20 percent of hospital patients, in older people it is even 50 percent. As a rule, those affected are confused, anxious, highly nervous and/or hallucinate. The sleep-wake rhythm can also be disturbed.

“You used to love reading the paper!” – Detect hidden signals

All his life, your father read the paper. When he retired, the reading at the breakfast table was celebrated. Now the newspaper often lies around half-read or not looked at it at all. You hear yourself say: “Why don’t you read the paper anymore? You’ve always liked that!” The same applies to reading books or listening to radio broadcasts.

THE DEMENTIA ETIQUETTE Tip

Pay attention to hidden signals – but also to your own reaction. Don’t exaggerate!