10 things you didn’t know about dementia

“This book will be a visual aid for tens of thousands of relatives who are completely at a loss at the moment when they discover that a loved one has dementia. We have been looking forward to this book and will distribute it to all our doctors and caregivers as educational material,” says Alexei Sidnev, head of Senior Group, a private Russian network of boarding houses for the elderly, who supported the publication of the book in Russian. For a general audience, Laura Wayman’s book is a fascinating read. The author talks with love and respect about another universe — the universe of a person with dementia.

This book is truly a guide «through a universe where everything is topsy-turvy, like in Alice in Wonderland.» We have compiled the top 10 facts you need to know about dementia — this is a quick guide to Wayman’s book.

1. Caring for someone with dementia is hard work.

According to the American National Association for the Care of Relatives of People with Dementia, the burden of caring for such patients is three times higher than usual. Caring for a dementia patient is psychologically much more difficult than caring for a patient with a physical illness — it’s incredibly stressful. In order to reduce the emotional burden, the caregiver must realize that it is not in his power to change anything. The only thing he can do is give care and love.

Positive responses to all the emotions of the ward will help to maintain peace and confidence. This will benefit both: the patient will absorb and “mirror” the emotional state of the caregiver. Moreover, even a patient who has almost completely parted with cognitive functions is capable of this.

2. Awareness is a way to ease the process of leaving

The lack of knowledge about dementia and its specifics is a worldwide problem. This leads to social stigmatization of patients and their families, delays the diagnosis and, therefore, prevents timely initiation of treatment.

The denial of dementia by relatives of patients for fear of being labeled as a leper hinders the initiation of proper treatment. The only way to counter this is with knowledge about dementia. And the higher their level, the higher the loyalty of society and families, the better the quality of medical care. Laura Wayman writes: «Those who truly understand what dementia is will choose the path of acceptance rather than denial.»

“A caregiver who is familiar with the specifics of dementia thinks about the future and takes care of their own health. He will not change this principle, even if for this the ward has to move to a boarding house for people with memory impairments or to an assisted living home. As you begin to expand your knowledge of dementia, a deep, meaningful relationship will develop between you and your client. This will give you strength and confidence to take care of a loved one.

3. Dementia is the permanent loss of certain brain functions.

Dementia comes from the Latin de (“from”) and mens (“mind”, “reason”) and means a state of separation from one’s own mind.

As the Alzheimer’s Association explains, dementia is «a spectrum of symptoms associated with impairments to memory and other mental abilities severe enough to interfere with a person’s daily activities.» This spectrum is very diverse: progressive loss of short-term memory, speech disorders, problems performing habitual actions, disorientation in time and space, difficulties in processing information, difficulties with abstract thinking, reduced ability or complete inability to think rationally, feeling lost, fear, paranoia, changeable mood, changes in personality, character.

Irreversible loss of short-term memory and cognitive decline are caused by organic brain damage. The most common causes are Alzheimer’s disease (60-80% of patients have it) or ischemic stroke. Also, the reasons, and there are more than a hundred of them, may be brain injuries, Parkinson’s disease. There is dementia with Lewy bodies. Most often, two or more causes are diagnosed. Different types of dementia have different signs, the speed and size of regression, and the behavior of the patient. Therefore, it is very important to make an accurate diagnosis.

Unfortunately, there is still no quick and easy way to diagnose Alzheimer’s disease and other causes of dementia. New technologies only make it possible to more reasonably assume what caused brain dysfunction.

4. Mental abilities are destroyed gradually by dementia.

This is most visually represented as a chaotic removal of elements from a three-dimensional puzzle. When and where the next piece will disappear, no one can predict. There is no universal algorithm for working with dementia patients, “cases of dementia are unique, like fingerprints, … there are no two identical stories, all advice will have to be modified for specific conditions.”

Knowing about dementia is, first of all, the realization that the loss of brain function is progressive. It is impossible to stop and, moreover, to stop it. Relatives of a dementia patient should understand that the syndrome can only worsen. The best and only thing that can be done is to help manage the symptoms. And in this assistance, it is important to be flexible — following the progressive loss of brain function, everything can change very quickly. «I want to teach you to cherish and enjoy any intact piece of the puzzle while it’s still possible.»

5. Denial of diagnosis is a common obstacle to treatment.

In addition to denial by society and the family, there is also denial on the part of the patient himself — anosognosia. It develops in 80% of people with Alzheimer’s disease. An almost equal number of post-stroke patients also suffer from anosognosia. It manifests itself differently for everyone, but there is a common feature: a person does not understand that he is sick.

The catch is that not only the patient himself denies the disease — often others cannot see this either. Even measuring the level of intelligence will not reveal anything suspicious. You can “seize the moment” only by starting a conversation about dementia. The apparent adequacy of a person can play a cruel joke with him: the disease progresses, but there is no cure.

This is exactly how the American ex-president Woodrow Wilson was once unlucky — anosognosia did not allow him to receive timely help after a stroke. Self-denial of the disease can also manifest itself in people with a very high intelligence.

6. It is useless to try to appeal to reason

People with dementia cannot be brought to face reality. They all live in their own bizarre worlds. It is useless to argue, to convince, to prove something. Moreover, this can only do harm: a person will become anxious, will become confused.

To establish contact with the patient, you will have to enter this world and recognize its reality. If you agree with the patient, confirm his feelings and remain calm, the connection between you will become stronger. When you give a positive response to the patient’s emotions, both of you begin to feel your own worth and dignity. This is the essence of Laura Wayman’s «positive method», which allows you to find contact with a demented person.

“You should not try to correct the way the patient sees the world. Better train yourself to deal with his behavior caused by paranoid thoughts in a new way. As unbelievable as the allegations and allegations sound, listen to them.” In difficult situations, take the initiative in your own hands and act as if you believed everything that the mentee says — this is the method of «creative intervention» of the author of the book.

7. Words are not the main thing

Patients with dementia respond much better not to words, but to emotions and non-verbal signs and signals: facial expressions, gestures. The more the disease progresses, the stronger the non-verbal connection. Intonation is stronger than words. In the later stages, touch and a calm smile are much more effective than words of approval and support, which are undeniably important at the beginning of the development of the disease.

“Never forget non-verbal cues. We all communicate, including through emotions, facial expressions, and touch. If during a conversation you hold a person’s hand and smile, you tell him much more than words can express.

8. Guilt is the eternal companion of the caregiver.

No matter how great the burden on caregivers, no matter how long it takes, no matter what heroes they really are, many feel guilty. People suffer because they do not always have time to do everything necessary, sometimes they take care of other family members or themselves, from time to time they seek help, leaving the patient alone or with someone else. They are ashamed to enjoy life.

This unjustified in every sense feeling is also very destructive. It leads to depression and overstrain — physical, psychological, mental, and then to breakdowns, depressions.

Here it is important to know and remember: if the “doctor” does not take care of himself, then his help will be worthless. Patients read, absorb and «mirror» the emotional state of those caring for them.

9. The caregiver of a loved one with dementia constantly feels the loss.

When a person has dementia, he gradually ceases to fulfill his usual role in the life of a caregiver. And this process is traumatic, because it changes all aspects of life — domestic and social. The patient will lose physical and mental abilities, at some point he will no longer understand who is next to him. This will radically change the relationship in the family; it will not be possible to return to the previous state of affairs.

“In addition, you will constantly have to be aware that you are caring for a person who is terminally ill. No matter how you try to prepare for the day when he draws his last breath, when this happens, you will feel that you are much less ready than you thought. You may have to go through the whole process of experiencing the loss again. After that, you, like other family members, have to get used to life without this person and find a place for yourself in the world without him.

10. The most important thing is to take care of yourself.

Laura Wayman notes: «The main thing in the relationship between the caregiver and the patient is the caregiver.» If he takes care of himself, he will have enough health and strength to take care of a loved one.

Attorney Todd Ratner, a specialist in the rights of the elderly and inheritance planning, has calculated: “…16 million Americans can be classified as a “sandwich generation”: they are in the grip of caring for two generations. While raising children and caring for elderly parents, they also have to work full-time. This tug-of-war in all directions at the same time is a serious cause for stress.”

It is difficult for carers to realize their leading role in relations with patients, but it is necessary. It is important to learn to let go of guilt and find the moral strength to take care of yourself, to deal with stress. If necessary, seek help from family, friends, and support groups. In this case, sacrificing yourself is not the only right way, but a dangerous road to the destruction of not only your health and personality, but also the patient. He will feel your condition and go deep into the disease, and you will not be able to help him.

On the contrary, your calmness, confidence, cheerfulness will create an appropriate emotional environment that has a beneficial effect on the patient. Physical and moral strength will help to overcome the obstacles that the disease will put.

Source: Laura Wayman’s Let’s Talk About Dementia (Olymp-Business, 2018).