“Fight, reproach or insist only worsen things”: how to treat a relative who suffers from dementia

He decided to collect his experience in a book, “What's wrong with my mother?”, Where has a simple language and enjoyable useful information about this disease.

BBC Mundo spoke with her.

What would be the first advice you would give to a relative of a person with dementia?

It is a diagnosis that falls like a jug of water, because you say, well, it is an irreversible disease and has no cure.

But I would transmit that there are as many types of dementia as people with dementia and that each evolution is different.

There will be an improvement of symptoms, but there may be an improvement in the quality of life, which depends on care, and if certain psychiatric symptoms are treated, it can also improve functionality.

I would also tell you that the information is power and that it is best to understand what is happening.

We cannot try to solve what cannot be solved, but we can face it in a healthier way for the person with dementia and for us.

Let them leave their autonomy as far as they can. In advanced states it will not have it to decide according to what things, but what you prefer to eat, for example, or what you want to dress.

You have to go step by step and the environment will have to be adapted according to the stage at which you are.

What do we have to be attentive? What can be symptoms prior to diagnosis?

In addition to cognitive changes in memory, there may be psychiatric symptoms such as apathy or depression, changes in your personality, that becomes more irritable and does not tolerate frustration, that becomes impatient or more rigid, not to listen to the reasons for others.

But it has to assume a change of behavior, something new, and that persists in time.

It is a usual situation, mediated by fear, that people with family history of dementia care very much with their own mistakes.

How do we distinguish a normal mistake from something that can indicate dementia?

The key would be the operation in everyday life.

With age, memory or speed to process can reduce it but we compensate for other functions, such as having more wisdom and experience.

You also have to think that sometimes memory failures can come due to a stress situation, because you have a thousand things in your head.

Having mistakes is normal; They only cease to be when they affect the ability to maintain day -to -day functions.

In general, in cases of dementia, the people of the environment are more concerned than the patient himself; And when it is not dementia, it is the person who believes that it has symptoms that cares more, even becomes obsessed and this makes even more nerves, anxiety, and tends to fail more.

Therefore, the key is to see daily functioning and if deterioration can be seen.

There is a lot of talk about how adults affects a diagnosis of dementia in the family, but how do children be told?

You don't have to hide anything, because in the end the child will see what strange things happen and does not understand what happens.

You have to explain to a measure and form that you can understand, adapted to your age and capacity, even to the interest you have to know, because some will ask questions.

I would explain that the person has a disease in the brain that makes him behave in a different way, that for her everything has become more difficult and that they do not remember what they have done or do not know how to find the words or how to communicate what they need …

Or they are not able to recognize who or where they are.

I would tell you that although it is a disease that we cannot cure, we can help them.

It can be shocking for family members, even more for children, when a person with dementia, for example, looks in the mirror, believes it is another and speaks to him.

In this case, the best thing for children is to explain them in the most natural way that how it has a disease in the brain does not recognize its own image.

The problem is that many times not even adults understand this and it is important to have information to understand it, explain it and not generate fear.

In the book you say that in these cases sometimes it is not convenient to fight the truth, which is relative. That it is better not to argue.

It is very frequent in the issue of dementia that the person has difficulty recognizing that he needs help, or that there are things that he sees and hears that they are not real, but is convinced that they are.

They can look for keys, such as making him recognize some characteristic of his, a lunar, something, in that image he sees in the mirror, for example.

But if you see that it is not recognized, that it is worried, it may be the best to cover the mirror, because it is to continue blowing against the wall.

The family sometimes tries to explain with logical responses, they argue that what you are thinking or listening is not real, but most of the time this will take us away from the solution and let it be helped.

Discuss and insist not only does not usually work but sometimes worsens the problem.

It is important for the circle around the person with dementia that recognizes what things we do that worsen the situation to stop doing them.

What is the most common problem that relatives who have to face tell you?

The rebellion and how to deal with her.

And it may be due to the fact that the patient with dementia is asking him to do something and does not understand how to do it or not give him time or that he does not collaborate for distrust.

It can be a reaction secondary to psychiatric symptoms, but also the way it has to claim its autonomy, to seek to have small conquests in a world that feels does not control.

How do we act if we suspect that a relative can have dementia?

Talking to the doctor is essential, but the first thing would be to ask our relative, listen to him and tell us if he notices any failure or problem, if it shows more nervous or that gets angry more, if he recognizes any difficulty.

This may be the entrance door to convince him to go to a doctor.

You have to respect your times and wait for an opportunity, both in what you express and in the problems you notice.

Ultimately you can tell you something style “hey, mom, dad, I'm very worried. I would be quieter if the doctor sees you.”

In general, they usually accept. Taking them cheated is the worst idea.

You just mention in the book deception as one of the negative social factors for dementia.

It is done with the best intention, but it is not the best. Nor tell anything to Bocajarro. You have to transmit things so that the person is participating as far as.

Another of the negative social factors that I name is carelessness.

Families usually manage, but this is a problem of society and institutions, which neglect people with dementia.

There is a stigma and a kind of banishment of the person with dementia, which in a way, is separated from participating and relating to family and friends, which loses a social connection space.

Or what they feel or express is invalidated.

It is important to listen to your needs, your affections. Sometimes there is no choice but to impose, but at the outset it is not the best. Do not unpack them.

Nor can they be objectified. You have to communicate or ask for permission for example when they are going to bathe or dress. We must explain why, although they cannot communicate many times, they are still there, they are not a sack of potatoes.

You have to explain them in a simple way, directly, but without treating them as children, because we cannot forget that they are adult people with a life story behind.

Regarding this, one of the things you point out is the importance of leaving them autonomy, for example, not removing the driving card to the first one that has a diagnosis.

It is important for them as would be for any of us. You have to take measures according to difficulties, not before. Gradually, not guided by the diagnosis.

Sometimes disproportionate measures are taken to avoid risks and can be worse.

It happens with the handling of the car or money. You have to see if the person is able to drive, or if he can handle small amounts of money, or if he can cook autonomously.

And then, adapt those tasks.

If it is someone who cooked a lifetime, you may now need help, or who can only chop ingredients, but you have to give them a work related to what is valuable for them, adapting it to the extent they can.

It is also important to validate their emotions and help them face and solve everyday problems, especially in minor phases.

If you can, reminiscence therapy can help, which is one where it is about remembering, emulating your life and building that life story with things that connect with your self, for example, through music.

Family members of patients with dementia can live with the fear of having the same destination as their grandparents, parents, and so on. What should they do and what should not do to prevent and reduce risk?

In recent years, more work has been done to study the modifiable factors and look for preventive strategies, because in the end the population is old.

One of those main factors is the cognitive reserve, the educational level or, let's say the brain with more activities, the most curious, not only has to do with the subject of studies.

It does not mean that Alzheimer's cannot affect us, but the disease will take longer to manifest.

So a good cognitive reserve does not protect against the disease, but delays it.

Then you have to be aware of all the factors that damage the arteries, such as smoking, alcohol, toxic consumption, obesity, increased tension, cholesterol … because they increase the risk.

If we have vision or audition problems it is important to correct them, because it helps to prevent being more connection with the environment.

It is important to be socially linked and have cognitive activities, routines.

If we try to control these factors to the extent of our possibilities, up to 40% of the risk of dementia could be prevented, which is not a small thing.

In the case of family history, although it can imply more risk, these diseases are usually manifested below 60 years.

But I tell you: the genetic factor is another risk factor, but it is not decisive.

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