Let's Talk About Dementia. Helping Caregivers For People With Memory Loss, Alzheimer's And Other Dementia - Quality Of Life, Reviews

2023 Author: Oswald Adamson | [email protected]. Last modified: 2023-05-21 20:18

• Let's talk about dementia. To help caregivers for people with memory loss, Alzheimer's and other types of dementia
• By Laura Wayman
• Moscow: Olymp-Business, 2018

Let's Talk About Dementia is an excellent resource for those caring for people with memory disorders. The author of the book, Laura Wayman, a renowned gerontologist, lecturer, and host of trainings and seminars, has developed her own methodology, the effectiveness of which has been confirmed in thousands of boarding houses and medical institutions.

The book is based on the real stories of families faced with this diagnosis. Laura Wayman talks simply and clearly about how to communicate with people with dementia, how to maintain a healthy emotional atmosphere and cope with the patient's negative reactions. The author shows by the example of his family: all relatives of the patient need to take care of their own physical and psychological condition for help to be effective. The book is addressed to the widest circle of readers: relatives and friends of the patient, medical personnel, as well as all those who are faced with problems of memory loss.

Thirty percent of 80-year-olds in our country are not able to serve themselves on their own - mainly due to dementia disorders, the so-called senile dementia. In 10 years, according to the latest data from Rosstat, the number of 80-year-olds in Russia will double, which means that the number of dementia patients will also increase

Dementia is a condition of the human body about which we know little; while we are young and healthy, it is difficult for us to imagine what it is like, to feel and try on ourselves. Imagine this picture: you and I are having dinner in a company in a restaurant, sitting opposite each other. I am telling you something, but you are hard of hearing, so every second word is incomprehensible to you.

You are embarrassed to ask again and just pretend that everything is clear to you. When I point to a bright writing on the wall and say how funny it is, you get lost, because you cannot distinguish colors, and in general you do not see well. Maybe you could move closer, but changing position is also difficult, since the furniture is only suitable for healthy people.

Dementia can be compared to your condition in a foreign country, where you do not understand speech or signs on signs. It is still you, but you are confused and very scared.

How to communicate with older people correctly? Speak loudly and slowly enough, but not irritated, do not allow ridicule, look directly in the eyes. Make sure you are clearly visible, do not stand against the light

Caring for someone with dementia is a work that requires dedication and patience. Unfortunately, many people who are involved in caring for such patients selflessly sacrifice their own health for this. In addition, it is not uncommon for caring relatives, even professional nurses and health workers, to have the theoretical knowledge and training required to care for such patients. But even the most careful approach turns out to be ineffective if the specifics of dementia are not taken into account.

Caring for someone with a cognitive impairment is sometimes much more difficult than caring for someone with a bodily disability who remains sane. Disorientation, forgetfulness, memory loss and related behavioral features can traumatize not only the patient himself, but also those around him. Dementia irreversibly changes people and the relationship between them.

In addition to all other difficulties, the caregiver will face conflicting feelings of his own - this is especially true for those who care for a family member. Emotions change each other in a matter of minutes: from guilt, denial and despair to compassion, acceptance and understanding.

The situation is not always happy and easy. Probably, you will only find the strength in yourself from time to time to realize what is happening; you may never find them. Probably, all along the way you will look in vain for any meaning in this.

For some, caring for a loved one with dementia remained empty and hard work, but for others it was filled with deep meaning. On this path, everyone has to face different problems; it can be very difficult to go through unpleasant and even emotionally painful events, unresolved conflicts from the past. And yet, trust in your own intuition and flexibility will help you see the situation in all its integrity and uniqueness - and navigate difficult circumstances.

Your loved one (or client or patient, if you provide professional care) may face many difficulties due to physiological, emotional and behavioral factors. For example, a person with dementia may not be able to communicate without crying because their brain functions are impaired and they are unable to contain heavy or painful emotions.

You may have to look after your mother or father - someone who may have hurt or even beat you as a child, rather than raising you in a safe and loving environment. Now you are trying to build new relationships, but old feelings and memories cannot be erased.

Talking to someone with dementia is not just words. Basically, it occurs at the level of intonation, facial expressions, gestures. Communication with a dementia patient is primarily based on the emotional component

Often times, caregivers overlook the link between the stress they experience and the difficult behavior of their carers. In reality, a person with dementia reflects emotions like a mirror. For example, if you begin to urge the patient: “Come on soon! We are in a hurry!”- then you will encounter resistance: the patient will begin to move even more slowly, become indifferent.

If you throw angry glances at the patient, stomp impatiently, cross your arms in displeasure, roll your eyes, sigh (in short, show your irritation), it is likely that these emotions will also affect the behavior of the person with dementia.

If you are irritated, worn out, or anxious, the person will feel it, but will not be able to understand what caused your experience. If you manage to cope with stress and find peace of mind, you will see that the very process of leaving begins to transform.

This is another reason why you, the person caring for a person with dementia, need peace of mind. It will benefit (physically and emotionally) not only you, but also the patient himself: he will feel that he is in good hands, he will feel safe, he will help you in the process of leaving.

Daughter's path

The first symptoms were subtle and rare. Insidious Alzheimer's disease, destroying the mind of its victim, crept up unnoticed and began to take my mom away from me little by little

Alzheimer's disease is a cunning and cunning enemy that invades your life without declaring war, without reporting on his plans for conquest. “Probably it's just age,” I thought when I began to notice the first changes. It was then that I embarked on the path of denying my mother's dementia, convincing myself that what in reality were signs of the disease are only temporary troubles, and "in general, it's okay."

However, over time, the deterioration of her condition became more and more noticeable. Mom could no longer cope with the usual things that had never before caused her any difficulties: it became more and more difficult for her to maintain a general conversation at dinner, she was unable to concentrate, doing simple housework.

For example, when she cleared the table after dinner, she could leave dirty plates on it or forget to put leftover food in the refrigerator, which was not at all like her. And yet I didn't want to hear about it being dementia. After all, her memory was still quite good!

Yes, periodically short-term memory let mom down, but she remembered in great detail the old episodes from her life. In addition, she often, with the same eagerness, took up the usual tasks that require great attention, and successfully coped with them, could easily maintain a conversation.

But as soon as I breathed a sigh of relief again, I noticed that my mother was painfully choosing words, retelling the article she had just read in the newspaper, getting confused and fixated on details, trying to formulate a thought.

At first, my mother was able to compensate for her forgetfulness: she either changed the topic of the conversation, or found an analogue to a forgotten word or an elusive thought. Noticing this, I convinced myself that it was just a momentary clouding: just think, it doesn't happen to anyone!

But later it became difficult for her to watch TV programs with even the simplest plot, to follow the course of events and understand what was happening. Even then, I continued to deny everything: "Mom is just tired." Or: "She probably has hearing problems, so she can't hear the TV."

I did my best to drive away thoughts of dementia and insisted that it was temporary, you just need to wait a little - and it "will pass by itself." At the same time, I was haunted by an excruciating fear of new, already undeniable evidence of the disease. The moments of "enlightenment", when my mother seemed to me the same, I tried to use as confirmation that my denial is justified.

The complete lack of knowledge about dementia for a long time did not allow me to leave the vicious circle. It didn’t help to understand that my mother’s illness progressed slowly, and the period of deterioration stretched for several years: this very duration prevented me from realizing that what was happening with my mother could no longer be explained by “just age”.

It was the very fact that the disease developed gradually that prevented me from seeing the truth until the symptoms became apparent. I could not help noticing that it was becoming more and more difficult for my mother to remain herself, with what difficulty she was given even the usual everyday things - and yet I continued to deny the real state of affairs, clinging to the illusion of well-being

Only a year later, I decided that my mother needed to consult a doctor about anxiety symptoms. We went to the appointment together and we both gasped when we heard about "mild cognitive impairment." The doctor did not utter the terrible word - "Alzheimer" - and we took this news calmly: it means there is no reason for panic! After all, "mild cognitive impairment" is not nearly as frightening as "Alzheimer's" or "dementia", is it?

This “harmless” diagnosis did not make me raise my own awareness of the disease, seek information that would help me avoid many mistakes. I wanted to believe that I could cure my mother, stop the worsening, or at least slow it down. I wanted to believe that the disease would go away, my mother would get better and I would not be left alone with this ruthless beast - dementia.

I continued to look for confirmation of my innocence in my mother's behavior - and every time when she somehow demonstrated mental abilities, even if weakened by the disease, or when she managed to use the still untouched resources of the brain and seem adequate for a while, I was strengthened again. in its denial. These moments of enlightenment allowed me to believe that things were not so bad, and her condition was just called "mild cognitive disorder" and not the scary word "dementia."

In reality, all this time I hesitated between accepting my mother's illness and self-deception. By “observing” and “noticing the symptoms,” I tried to “correct” them in my imagination. I tried to help in temporary and completely inappropriate ways: I pasted notes for my mother, reminding her of what she could not remember herself, even corrected her when she was mistaken in words or facts, forgot to take the medicine or was unable to restore what she was about than I just told her.

Of course, gradually the harsh reality took its toll: no notes, no reminders, no corrections, no my short visits could stop the destructive effect of the disease. Mom began to worry terribly when I showed up at her doorstep, although just an hour before that I had warned her that I would come.

She was confused about her medications, did not take them on time or did not take them at all. She stopped regularly washing and changing clothes. Time after time, visiting my mother, I saw her in the same dirty black turtleneck, black house trousers and gloves (my mother wore them at home - she constantly complained that she was freezing, even in the heat in summer).

She developed movement disorders: her gait became shuffling, she lost balance, and often fell. I noticed bruises and abrasions on her, but she did not know where they came from, and did not remember when and where she fell and whether she fell at all.

One late evening my neighbors called me. They saw my mother wandering back and forth in her nightgown near the entrance to the garage: it was obvious that she was completely lost. It suddenly became very clear that she could not be left alone, and I decided to move in with her.

After I dared to take this difficult step that changed my life, there was no turning back. I could no longer deny the obvious - the implausible attempts to explain what was happening to myself no longer hid the terrible truth: it was dementia - an inexorably progressive and irreversible loss of cognitive functions.

Soon, constant supervision was required for my mother - her mental performance was rapidly falling. When I finally recognized my mother's illness, one of the sad discoveries for me was how difficult and costly the treatment would be. Subsequently, I discovered that there is still no easy way to diagnose Alzheimer's disease and many other causes of dementia (there are over a hundred of them).

The results of current research and new brain imaging technologies only provide an opportunity to make more informed assumptions than before about the causes of brain dysfunctions

The doctor we turned to did not feel entitled to diagnose my mother with Alzheimer's disease or another form of dementia, without having data from more complete examinations; so he referred us to a neurologist - a specialist in dementia.

While trying to find out more about this ailment, I found out that there is no single study that would establish whether a patient has dementia or not. Doctors can make informed judgments based on symptoms, but there is no simple, straightforward way to make a diagnosis.

When the symptoms of memory loss became so severe that my mother could no longer do without constant supervision and care, then and only then did I accept the already indisputable fact that she suffers from irreversible and progressive dysfunction of the brain. In other words, she has dementia!

Only then I stopped running away from reality and was able to see what actually mattered. What was important was not how the diagnosis sounded, and not what caused all the new symptoms, but what the mother was in in reality and what she could still cope with.

My task was to work with what was happening at the moment, if necessary, take action and think over a plan for effective care for her. The key strategies were to be close to mom here and now, provide her with physical and psychological support and care, monitor her safety, relieve the most severe symptoms and correct behavior difficulties.

Looking back, I admit with bitterness: if I had enough information about dementia from the very beginning, I could save myself - and most importantly, my mother - from many hardships and anxieties along the way.

People tend to not admit what they find annoying or frightening. But if denial does not allow us to face the problem and take measures to solve it, then it can only harm us and our loved ones

In most countries of the world, there is a problem of insufficient awareness of the population about dementia and a lack of understanding of its specifics, which leads to stigmatization of the disease, hinders timely diagnosis and effective treatment.

This, in turn, negatively affects the caregivers, their families and the whole society - physically, psychologically and economically. Dementia is an overwhelming burden not only for the patients themselves, but also for those who care for them, for their families and for the whole environment.

No one wants to experience dementia in a loved one, so caregivers are prone to a particular type of denial. I call this “specific dementia denial”. The reasons for this phenomenon lie in the instinct of self-preservation and the desire for self-defense. Ultimately, however, denial only adds to the difficulties in the path of both the person with the diagnosis and those who care for him.

Denying dementia forces the caregiver to agree with the patient, who insists that they are “okay”. Those who do not admit dementia of a loved one often refuse to intervene for too long, allowing patients to take risks - for example, to drive a car, to manage their finances on their own - instead of thinking through the legal and financial side of formalizing care.

Denial of dementia is a serious problem that prevents you from taking control and avoiding many potentially dangerous actions on the part of patients, often left unattended until someone is hurt.