Dementia: how to live with those who are nearby

Violations of memory, thinking up to a complete loss of reason. When someone close gets dementia, it becomes a test for those who take on the hard work of caring for the sick. How can you help?

Feelings of fear, guilt, despair and bitter injustice – it is very difficult to describe everything that is experienced by those whose parents or someone close lose themselves day by day.

Mild disturbances in attention, memory, speech are experienced by 83% of men and women over 60 years of age. This is due only to natural age-related changes, it is noticeable to the person himself and does not interfere with his life. But in 25% of older people, these disorders transform into dementia. Its severe forms are also called dementia or insanity.

In the book Dementia: Diagnosis, Treatment, Care and Prevention, doctor Igor Damulin and psychologist Alexander Sonin tell you what to do if someone close to you has been diagnosed with such a diagnosis.

It doesn’t matter what caused dementia, irreversible brain damage radically changes a person’s life. He ceases to understand and remember new information, to think logically, does not recognize his children, and close friends can be considered long-dead relatives. Gradually, he loses all life skills and cannot remain alone, he can no longer rejoice, be surprised, empathize. The person loses his identity.

Another life begins for the one who takes care of the sick. For the sake of this, one often has to sacrifice work, to see how the husband (wife), children, and friends are moving away.

As our average life expectancy grows, the number of those suffering from dementia is also increasing: today in the world it exceeds 36 million people, in Russia – about 1,5 million. And next to them, millions of those who will participate in this drama up to the very end.

Learn to speak and listen again

The diagnosis of dementia is a serious shock for anyone, even if the person himself could admit its possibility. All his life plans are ruined. Very quickly, the disease limits contacts with other people: it is difficult for him to speak clearly, he is not always able to complete the phrase he has begun, to remember what is being said. To help the patient, family and friends must learn to communicate with him again. 10 tips for loved ones:

1. Speak slowly and smoothly.

2. Avoid sharply raising your tone. Forgetting the meanings of words, but retaining the ability for emotional experience, a person suffering from dementia first of all reacts to intonation.

3. Make sure you manage to draw attention to your words. To do this, gently touch a loved one, look eye to eye. If he is sitting, squat down too to be on the same level with him.

4. The initiative in the conversation should belong to you.

5. As dementia progresses, it will become increasingly difficult for the patient to start a conversation on their own.

6. Formulate the question so that it can be answered in one word: yes; No; do not know.

7. If he does not understand you, even if you repeat the same phrase several times, try to formulate your thought differently.

8. The past is remembered better than the present.

9. Therefore, with a patient with dementia, try to talk more often about the distant past, this calms him down.

10 If a loved one has stopped responding to your phrases, never talk about him in the third person in his presence – this humiliates his dignity.

“A month later, I realized that I was starting to go crazy”

Alexey, 48 years old

“I rang the doorbell: my mother did not give me the keys to her apartment. “If I’m at home, I’ll open it, if I’m not there, then why come in, what are you going to do here without me?” It seemed to her that in her absence someone was shifting documents. And money. But aren’t all old people weird?

I started knocking. Nobody opened. And I knew she was at home. “I feel bad, come.” Then smoke came out from under the door. I got scared. I kicked the door, good old, barely holding on. There was a black pot with the leftover pasta on the stove. Mom lay on the floor and calmly looked at me: “Where have you been?”

I started to lift it – it turned out to be unexpectedly heavy and moved with its legs, interfering with me. I caught myself in a wild desire to whip her cheeks. Out of helplessness, he called an ambulance, although he understood that it would not help us. My wife flatly refused to take care of her mother-in-law, and I myself began to come to my mother after work. Persuaded her in the end to give me the keys.

I found a doctor on the Internet, he prescribed pills, but from them my mother’s whole body became like cotton wool, and nothing else changed. “To the toilet!” she said. Then she called: “I am everything!” Sometimes after that I had to wash the floor, my mother and wash everything. At first, I felt squeamish and awkward. Then it passed, only anxiety and fatigue remained.

During the day I called her every two hours. When she did not come, he broke down to check. After a month of this life, I realized that I was starting to go crazy. From the very beginning, my wife insisted that we hire a nurse. I thought it would be a betrayal. Yes, and my mother, it was worth talking about it, she began to swear terribly, shouted that I was rubbish, and not a son. She was angry, and I was happy: in these moments she reminded herself of her former self. And yet I gave up.

Another doctor came, he was advised by a friend of his wife, who had the same trouble in her family. He said: “I will help to improve the condition a little, but this is only for a while, prepare for the worst and do not flatter yourself.” And my mom gave in. I didn’t ask her anything anymore, I just brought a woman from the agency to her and said: here is Galya (later it turned out that she was Gulnara), now she will help you. Mom just nodded.

Now two more nurses have joined Gulnara. They work in shifts. I come for a couple of hours on the weekend. I have no more hope that my mother will get better.

Mom stopped scolding me completely. Once she even took my hand: “You are a good son.” I turned away so she wouldn’t see me crying.”

Love against all odds

So far, of all human tragedies, dementia has perhaps been the least of the filmmakers’ concerns. Austrian director Michael Haneke dared to touch on this topic. His film Love, winner of last year’s Palme d’Or at Cannes and one of the most talked about films of recent times, is a poignant story of an elderly couple.

After suffering a stroke, a woman slowly loses her mind. Her behavior is an accurate clinical picture of dementia. Accurate enough that the film could well be used as a teaching aid for medical students. However, the main value of the film, of course, is not in this. This is really a picture about love – about its greatness and diversity, about its ability to overcome everything, even if you have to pay the most terrible price for victory.

Resist guilt

Caring for someone who will never appreciate this care is so difficult that fatigue seems to leave no room for love or even sympathy for a loved one. And the one who lives next to him, embraces a sense of guilt. “Do not suppress your feelings, try to understand them,” advise Igor Damulin and Alexander Sonin.

1. Don’t be alone with your problems. Family concerns should not disrupt communication with the outside world. Do not hesitate to directly ask friends and relatives to come to you more often, call. Communicate with those who have been in such a situation and understand you.

2. Don’t refuse help. Say directly what you need now, always let others feel how important their participation is for you.

3. Do not wait for negative emotions to spill out in the presence of the patient. Make sure that you are not seen or heard, and, for example, fluff up a pillow well to release your anger.

4. If you are feeling emotionally drained, see your doctor. Don’t let depression develop!

5. Don’t forget to pay attention to yourself. Find time every day to do what you love.

Alexander Sonin, psychologist: “It is important not to miss the first signals”

Psychologies: What can modern medicine oppose to dementia?

Alexander Sonin: In some forms of dementia, a complete restoration of memory and thinking is possible. With others, such as Alzheimer’s disease, you can only slow down the development of symptoms, mitigate their manifestation – but in the early stages. Therefore, it is so important to contact a neurologist at the first alarming signals.

Should I tell the patient the truth?

This must be done as soon as the diagnosis is made. And give a loved one time to realize this news. Knowing about the future, he will be able to plan for the near and distant future, think over financial and other issues, and draw up a will. Perhaps a person wants to leave his job, to realize some old dream.

At the beginning of the disease, he will be able to participate in discussions of therapy. And if relatives do not dare to tell the truth, a tense atmosphere arises in the family, which only increases the anxiety and anxiety of the sick relative. But you have to be prepared for the fact that he will not believe you. In this case, it is better to seek advice from a specialist – for example, a psychotherapist.

Can you protect yourself from dementia?

Unfortunately, today there is no way that would prevent its main causes or stop its development. However, taking care of your lifestyle, you can improve memory, attention, thinking. Eating cholesterol-lowering foods, avoiding smoking and alcohol abuse, and moderate and regular physical activity are all positive factors.

Intellectual loads are extremely important. Those who read a lot, do mental exercises, do small manual work, play intellectual computer games, learn new languages, or master a new profession after 50 years of age, the risk of violations is markedly reduced.

Finally, a wide social circle reduces the likelihood of cognitive impairment for older people. Marital status also has an impact: those who live with a family are, on average, half as likely to get dementia as those who live alone.

About expert

Alexander Sonin — psycholinguist, doctor of psychology, doctor of philology, specialist in cognitive processes.

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