When Dementia Changes Your Life

Chapter 1 | First signs of dementia

• “Is it time?” – What to do when the first signs appear+
• “What did we do wrong?” – Confusion states after a hospital stay
• “You used to love reading the newspaper!” – Recognizing hidden signals
• “How to tell others about it?” – How and when to talk about the diagnosis

Chapter 2 | Eating and Drinking

• “Powinieneś pić dużo wody, tato!” – Zasada dwóch litrów kciuka
• “Dziadku, jedz już!” – Jak zachęcać do jedzenia
• “Dlaczego nie jesz, mamo?” – Gdy chorzy nie chcą jeść
• “Cukier był kiedyś słodszy” – Dlaczego pacjenci z demencją lubią jeść słodycze?
• “O Boże, mama jest pijana!” – Kiedy pojawia się nietypowe spożycie alkoholu
• “Stęchły chleb nie jest twardy. Nie ma chleba, jest twardy!” – Ślady przeszłości
• Moja najważniejsza rada – specjalna sekcja “Jedzenie i picie”.

Chapter 3 | Daily Life

• “I don’t understand you!” – Hearing aids alone are not the solution

• “Why don’t you turn off the TV?” – Sensory overload caused by background noise

• “I’m always there for you, Mom!” – The trap of “I’ll take everything away from you”

• “What’s with the slippers in the refrigerator?” – Understanding abnormal behavior

  Chapter 4 | Psychology and changes in behavior

• “Where did you put the key?” – When objects disappear

• “Who is looking at me in the mirror?” – Loss of orientation about one’s own person

• “These people are watching us!” – The world of television suddenly seems real.

• “I’m looking for the nice lady who has always been there.” – Hallucinations and delusional misconceptions

  Chapter 5 | Communication and language

• “Do you want pretzels or rolls?” – When words disappear

• “Well, give me your leg.” – Relatives understand despite loss of speech

• “Why don’t you take a nap for an hour, Grandpa.” – Idioms taken literally

• “Is the water hot or cold?” – misunderstandings can be dangerous.

• “Have you seen my water heater?” – When relatives understand only stationary

• Special section on communication and language

  Chapter 6 | Emergency Situations

• “There is a strange man in my bed” – When reality changes

• “How many children do we have?” – No memory of relatives

• “Help! Burglar!” – Building confidence to get rid of fears

• “I want to call my mother!” – When the dead come back to life

• “Someone robbed me, the money is gone” – The theft that didn’t happen

  Chapter 7 | Mobility, dressing and undressing, going to bed

• “But no shirt in winter!” – When seasons become irrelevant

• “How he walks again today!” – Putting on clothes correctly

• “Careful, Mom, or you’ll fall over!” – Between freedom and physical integrity
  Mom on the run – when the urge to run away increases

• “Don’t do it!” – Dealing with unusual wishes

  Chapter 8 | Personal hygiene and toileting

• “Dad, you spilled again!” – Beware of incapacitation

• “I don’t want to brush my teeth!” – When oral care is refused

• “Where are my dentures?” – Denture challenge

• “Where’s the toilet?” – Age-appropriate living

• “You can’t pee here, it’s not a real tree!” – When the environment causes confusion.

  Chapter + | Appendix

• Top tips – at a glance

• Daily activities – my guiding principles

• Suggestions – specific actions in daily life

• Glossary – explanations of terms

• Small dictionary – dementia – German Translated with

“You should drink lots of water, Dad!” The two-liter rule of thumb

We all know how vital it is for us humans to drink enough fluids to survive. It doesn’t matter whether you look it up on the Internet, ask a doctor or pharmacist, or read about it in the relevant media: Up and down the country it is said that the seniors among us in particular should drink plenty of water, preferably two liters a day.

So make sure that your father always has a full glass of water next to him. But he doesn’t do you any favors. He refuses to drink when you ask him to and does not comply with your request even when you bring the glass to his mouth yourself. You are unsettled, and rightly so: isn’t your father thirsty? That can’t be, can it? Maybe he doesn’t like the water? But you have given him a drink of the kind he has always drunk. Is it perhaps stubbornness? Be that as it may, your requests become more and more urgent and your father’s defensive reactions more and more abrupt. No matter what you try, it’s no use. All of this can lead to a stressful situation for everyone involved.

The dementia etiquette tip
The subject of “drinking” must have a positive connotation and the facts must be clear to the person concerned.

How best to respond

• Let’s start with poor vision: Pour the drink into a cup with a handle.
• Choose a cup with a strong color contrast, such as red.
• Toast with your father, saying “Cheers!” and making sure to use a convivial tone. This will make your father feel more comfortable. In this way, drinking will have a positive connotation.
• Perform the drinking motion slowly so that your father can imitate you. The background is that people with dementia copy movements
• Last but not least, the rule of thumb “two liters of water per day” does not apply to everyone. If someone has drunk little all his life, he will not pour gallons of water into himself even in old age. Make sure your father drinks – but without putting pressure on him!”

Background knowledge

• In addition to the reasons already mentioned for elderly people and people with dementia not wanting to drink, the following reasons can be decisive for avoiding fluid intake:
• Those affected often do not feel thirsty or cannot cognitively assign the state of being thirsty – that is, they do not know what to do to make the feeling of “thirst” end.
• They suffer from visual impairments such as cataracts or macular degeneration and cannot see the water in the glass; their poor vision causes them to be careful in every movement so as not to knock anything over.
• They drank something specific for years, but with dementia, the preference has changed.
• They try to avoid burdensome trips to the toilet.
• They can’t manage the cup. This apraxia or movement disorder prevents them from making the necessary movements. A cup with a handle can solve the problem.
• Last time, swallowing occurred. Now the affected person avoids drinking.
• The simplest of all cases cannot be ruled out: The drink does not taste good.
• Pain in the palate can lead to difficulty swallowing and, in the end, to refusal to drink.
• Last but not least, it may be a combination of all reasons that causes unwillingness to drink.”

A situation that causes uncertainty among relatives and acquaintances and anger among those affected is related to so-called aphasia, i.e. speech disorders. Only recently, during one of my lectures, a young man turned to me. He had wanted to visit his uncle, he let me know, who has been suffering from dementia for several years and lives in an assisted living group. “I walked in,” he said, “and my uncle called out to me, ‘Well, give me your leg!’ I had no idea what to do. And that’s when the uncle gets all angry and yells at me, ‘Get out of here!’ I don’t even know what I did wrong. And I don’t know what to do next time either.

“The dementia etiquette tip

People with dementia compensate for their loss of speech. But they want to communicate despite their lack of words.

How to best respond

What sounds surprising to us is a normal situation for the uncle with dementia.

He wanted to greet his nephew, informally with the words, “Well, give me your hand!” Due to the speech disorder, however, he did not have the word “hand” ready. Due to the fact that the nephew apparently refused to shake his hand, the uncle felt offended. His reaction to the supposed rudeness? He throws the nephew out.

People with aphasia are often at a loss for words. They start rummaging around in all kinds of “word drawers” for expressions, much like we do when we look in a closet or dresser for a particular item. Sometimes we think we’ve found it, but it’s just something that looks similar. The uncle, when he looked for the word “hand” in his drawer, found only the word “leg”.

My tip to the young man: “Pay more attention to your uncle’s facial expressions and gestures during future visits. You will be able to interpret them more easily. Then you will realize that your uncle wants to greet you with a handshake, even if he says other things.”

Basically, in these situations: Laugh a lot and often with the people involved. Laughter represents one of the most important bonding communications. If laughter is heard, a person with dementia feels comfortable, understood and accepted. It improves his or her general condition and emotional well-being. Laughter lowers cortisol levels and thus stress hormones. This is good because cortisol can damage the brain of those affected even more.

Background knowledge

There are different types of speech impairment in dementia. In the early stages, there is often an inability to adjust to the respective conversation partner. Also, word-finding disorders already occur, and the affected person has lost the sense for a grammatically correct sentence structure. If the disease is more advanced, even simple sentences or individual words are often no longer understood. Or paraphasia occurs, i.e. word confusion disorders – as in the case described above. Paraphrases or filler words are also increasingly used. The word “thing” is gaining in popularity; for example, “thing to cut” means a knife. Similarly, neologisms that no one else understands may appear. The fantasy language takes on more and more pronounced forms over time, even to the point of stringing together mere syllables that are sung more than spoken. Finally, in the final stage, the language dries up completely.