When nothing gets quite right anymore

Sabine Tschainer, a qualified theologian and certified psycho-gerontologist, has been working with dementia patients for over 30 years. Initially as an employee, today at her own institute "aufschwungalt". Based on her many years of experience, she wrote the book "Stress-Free Dementia". In it, she introduces, among other things, the language she developed, "Demenzerisch®". She is active as a lecturer for famPLUS. We wanted to know from her what this language is all about, but also what tips she can give us for dealing with people with dementia.

Ms. Tschainer, can you describe in a few sentences what "dementia" is?

Dementia" means nothing other than "without reason" or, loosely translated: the brain no longer functions properly. People with dementia, for example, are forgetful, they unlearn everyday and acquired skills, they lose their sense of direction, and in severe cases, perhaps the worst of all, they lose the memory of themselves.

In our everyday language, we often use dementia as a general term for all conditions that exhibit such symptoms. However, there are numerous forms of dementia, and some are curable. The brain is still completely intact, but the dementia symptoms occur because, for example, the thyroid is not functioning or the patients are receiving too many medications. Or they are the consequences of depression in old age. Depression and dementing disorders are the most common mental illnesses in old age. However, depression is well-treatable or even curable. In most cases, a differential diagnosis is lacking. I therefore always recommend going to a memory clinic with the patients. Many clinics offer such consultations. (You can find a list of relevant institutions here  on the page of the German Alzheimer Society e.V. 

Incurable are vascular dementia and Alzheimer's. In both cases, the brain is irreversibly destroyed.

Why is it particularly challenging to care for people with dementia?

I always explain it this way: People with dementia are "dis-located." In the sense that they are beside themselves. To make sure no one notices, they often exhibit "facade behavior." They deny forgetting something or failing at something. The caregiving relatives then start to doubt themselves.

Often the day/night rhythm of the patients also shifts, and eventually the familiar person disappears. A wife—one of my clients—once expressed it like this: "I live with a living corpse who looks like my husband.

The dependency relationship is also particularly challenging. The person is there and demands closeness because they are increasingly lost. In part, those in need of care literally cling to their relatives, do not want to be left alone, but then sometimes also resist any form of help.

Who is your offer addressed to?

This is easy to answer: aimed at both family members and professional caregivers, as well as anyone who works professionally with people with dementia.

You have developed the "language" called "Demenzerisch®". It is supposed to help communicate with dementia patients. How should one envision this?

This "language"-learning involves us using our healthy brains to understand the expressions of those who are ill. And to communicate with them in such a way that even with their fading brains, they can understand us. There are three essential elements to it. First: "Refrain from persuasion." All our arguments, explanations, and well-intentioned persuasion are increasingly less, or not at all, received by the brains of those with dementia. And it usually just causes them stress. The second element is the "enthusiasm for being a detective." This is what I call the willingness to "put oneself in the world of the ill." To understand why they say and do certain things—or don't.

The third element is "cordial authority." There are moments when we need to be clear and assertive. But without explaining at length: "You must now because...". Better are short and concise statements, such as: "We're leaving now." or "Let's go...!" And all this before we lose our patience. That's why "cordial." The concept of authority is also important to me; it has nothing to do with being "authoritarian." 

Learning 'Demenzerisch®' has to do with our attitude. We need to retrain our brain. Those who speak 'Demenzerisch®' do not provide explanations, but take responsibility for another person, increasingly making decisions for them. The prerequisite is my respect and my interest in this person in their shifted world!

How do you know how people with dementia think? Or in other words: How do you know that they understand you?

I have a great interest in people and am keen to understand them. This, combined with over 30 years of professional experience with dementia patients, has taught me a lot. However, I have also learned that it is never possible to fully understand another person, whether mentally healthy or ill. Perfection and dementia do not go well together. But I learned the most when my own father developed dementia. Suddenly, there was no more professional distance, but I was affected with all my feelings. In that situation, I got to know the perspective of family members. Through my own father, I could see what a person with dementia understands in which situation and what does not. How he changed. And what that means for the family.

Isn't every person with dementia different? There are those who become aggressive and those who withdraw into themselves. Can we speak of a language there? Or is there a universal recipe for dealing with dementia patients?

Unfortunately, there is no surefire solution. What I can offer is a toolbox from which family members can draw the right response options for themselves and their patients. Relatives must proceed on a trial and error basis. If, in a situation, word "A" does not achieve the goal, then word "B" must be tried. If speaking softly doesn't help, one sometimes has to become resolutely loud—in the sense of "warm authority." And always keep in mind: The brain is damaged and needs orientation.

In your book "Dementia Without Stress," you provide guidance in dealing with the helplessness of managing dementia patients. Can you give us an example?

Family members often hear from the patients: "I want to go home." In such a situation, it helps to think outside the box. Why does the person want to go home? In most cases, they want to go home because they are familiar with it. The "need for safety, comfort" would be the key phrase. So instead of arguing why the person cannot go home or that where they are now is their new home, it is better to help them out of their helplessness. By satisfying their needs, creating a little feeling of "being at home." For example, by making tea, giving them an apple to peel, chatting together, or - if it was important in the patient's life - also having papers and folders at hand that can be "worked through." Unfortunately, we often make it much too complicated. "Demenzerisch®" relies on the "principle of simplicity." It helps greatly to understand: Nothing will ever be completely good again. We can provide patients with moments of comfort. The goal of all-around comfort days is, unfortunately, mostly very unrealistic.

They also give tips for approaches to take in difficult or escalating situations. What would be such a tip?

Exit the situation. Leave the room and return after 10 to 15 minutes. In advanced dementia, the patients often don't remember anything, and you can start over. Very important! Never say something like, "Let's try this again." That frustrates those affected because they realize that they have forgotten something or that something must have gone wrong. Come back as if you had never been there.

They say in an interview that dementia patients can be best "guided" in difficult situations with a "let's go" or a "we'll tackle it now." That is often easier said than done. What if the caregiver is not such a hands-on personality? What if they are struggling with the role reversal from being the child to being the caregiver, or are already at the end of their own strength?

It is very important to establish a private network of family, friends, and acquaintances from the very beginning, and as early as possible, a professional network of volunteer helpers, support groups, and care services. Caregiving relatives need one free morning or afternoon per week, one free weekend per month, and two weeks of vacation per year.

This is important for several reasons: It's better for everyone's nerves if the sick have multiple caregivers. Furthermore, difficult situations can be better endured if a break is in sight.

Regarding the role reversal, I can only advise seeking a support group for relatives very early on. Here you meet others who are usually in the same situation. You can exchange ideas and support each other. You realize that others have similar concerns and questions as you do. Good support groups for relatives are also like exchanges for ideas and solutions to cope with the challenging everyday life.

However, it is also helpful to repeatedly make oneself aware that there is a problem with the role reversal: children have to become the caregivers and decision-makers for their parents. Spouses suddenly face tasks that the other has always done. Here, the motto helps: self-awareness is the first step to improvement. Because it is really difficult. At the same time, those affected should also be merciful with themselves. Every small step counts! The motto just needs to be: stick with it. And by no means try to do everything alone.

At another point, you recommend red and sweet foods. Why is that?

Especially in Alzheimer's patients, the sense of taste changes. Savory foods taste like nothing or even disgusting. The sense of taste for sweet things remains. Then the roast pork needs sugar or jam on top to taste good. But ketchup also works.

It is also important to know that dementia often changes three-dimensional vision. Patients may not be able to recognize porridge in a white bowl, possibly on a white place mat. Red is a signal color that is easily recognized. Putting a dollop of jam on the porridge or placing the plate on a red place mat helps. Also helpful: a red toilet seat, painting the flush button red, or the edge of the sink in red.

In general, when dealing with individuals with dementia: One stimulus/one piece of information, one word,

one thing that needs to be done.

Finally, a very personal question: To what extent does your religiousness help you deal with this very difficult and challenging medical condition?

I am not someone who puts faith in institutions, but rather a spiritual person. Encounters with people are important to me. Contact with women and men suffering from dementia can teach us about encounters: simple and direct – if we allow ourselves to engage with it.

The Bible says: "Love your neighbor as yourself!" We often forget the "as yourself." I want a society that is safe for those with dementia as well. A society where we do not constantly correct them, but rather let them be as they are. Forgetful, yet no less lovable.

About Sabine Tschainer

Sabine Tschainer is a graduate theologian as well as a certified psycho-gerontologist and today the owner and managing director of the Institute aufschwungalt in Munich. With the aim of promoting and establishing a positive change in consciousness and values in society, she offers her advisory and support services, among others, to elderly people and their relatives. ö rige.

Before deciding to found aufschwungalt in 2001, she had gathered several years of professional experience in various fields of elderly care and gerontopsychiatry, held numerous volunteer board positions at regional and federal levels, and worked in training and further education for many years. Additionally, she is a member of the advisory board of the German Alzheimer's Association and a trustee of the German Health and Welfare Association (KDA).

Among all these tasks, she has authored numerous publications on various issues concerning elder care. In 2019, her book "Dementia Without Stress. Learning Dementese® for Easier Interaction with People with Dementia" was published – released at the beginning of the year by Beltz Verlag. We wanted to learn more about her work and her project "Learning Dementese®".

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