"We ask the person when they would like to stop living, in a natural way"

 

Juan Luis García Fernández holds a doctorate in Psychology, and he is a clinical neuropsychologist. He provides clinical care, undertakes scientific research, and he is a member of the Faculty of Health Sciences at the Universitat Oberta de Catalunya (UOC). His work as a clinician plays a major role in his research and teaching: he specializes in caring for people suffering from brain damage and neurodegenerative diseases. And not just those people, he stresses, but their families as well. We interviewed him to mark World Alzheimer's Day, and he reminded us that if we take into account the people who have Alzheimer's or other dementias and their family members or their most direct caregiver, there are more than two million citizens in Spain currently experiencing a very difficult situation which, he said, requires more research and more direct aid for the families concerned.

 

Juan Luis García Fernández holds a doctorate in Psychology, and he is a clinical neuropsychologist. He provides clinical care, undertakes scientific research, and he is a member of the Faculty of Health Sciences at the Universitat Oberta de Catalunya (UOC). His work as a clinician plays a major role in his research and teaching: he specializes in caring for people suffering from brain damage and neurodegenerative diseases. And not just those people, he stresses, but their families as well. We interviewed him to mark World Alzheimer's Day, and he reminded us that if we take into account the people who have Alzheimer's or other dementias and their family members or their most direct caregiver, there are more than two million citizens in Spain currently experiencing a very difficult situation which, he said, requires more research and more direct aid for the families concerned.

We tend to think that diseases have a single cause. Neurodegenerative diseases are related to various causes, and that is why it is so difficult for us to find their origin. But very significant progress is being made. Twenty years ago, we did not yet have a clear understanding that the origin of Alzheimer's was related to a build-up of proteins in the brain. And thirty years ago, we still did not fully understand the neuropsychological profiles involved in dementia, and Alzheimer's was thought to be an age-related dementia. Now we know that it can appear in some people when they are forty or fifty years old. This means that it is a social problem because the disease makes these people increasingly dependent, and this involves a very significant financial cost for their families. And when there is a social problem that involves a short-term financial investment, that's when science makes progress. We said it with COVID-19: how is it possible that a vaccine was developed in just a few months?

A lot more progress is made when there is a widespread need, and the scientific community is given a lot of money.

It is being studied, and we are still lacking information. We know all about the clinical profiles of the different types of dementias, but we still need to know why they appear. There are even dementias that can appear concomitantly, such as vascular dementia and Alzheimer's.

Prevention is very important. Maintaining social relationships, a healthy lifestyle, a Mediterranean diet. Doing physical exercise as well as cognitive exercises. We need to keep active in every way. Those are things that we can do ourselves during our everyday lives, although we know that if the disease is going to appear, it will appear. So there is another step in prevention: cognitive checks. In the same way as we test our blood pressure, it is also very important to do cognitive and psychological checks.

They are usually carried out by institutions, associations of relatives of people with Alzheimer's and other dementias. People should not be afraid to undergo this type of test.

Age, and noticing that you're starting to become absent-minded. This absent-mindedness may often be simply due to age, but if it is related to a process of deterioration that is identified at an early stage, we can still do things about them, and that is important for the person's quality of life. For example, we can do a neuropsychological intervention that is like a kind of "brain physiotherapy" to see if the absent-mindedness is getting worse or not.

Partnership is very difficult, but some centres do refer people who have just received a diagnosis to us. We work with the person who has been diagnosed and with their family, because both sides are very important. The family may be their partner, a son or daughter, or someone else who has begun to see the problems and who keeps an eye on them, and who ends up being the caregiver. At first, this person is usually very overwhelmed, and we work to give them information and knowledge about the disease and how it progresses so that when their relative has problems, they have the tools to cope with the situation in the best possible way.

You may end up unintentionally mistreating them. If the caregiver understands what is happening, they will have the tools to cope with the situation in the best way. If the family understand the disease, this will enhance the quality of life of the person who has been diagnosed. Families often think that they can come to the doctor or association when the situation is unsustainable, and that the situation will be resolved. And in fact, it is necessary to seek help at the beginning in order to be able to work with the person and the family, starting in the initial phases. It is as if you break your leg and go to the doctor three months later because it hurts so much.

Yes, they are important factors in terms of the care the person and the family receive. And as I said, we are still fighting for direct cooperation between public and private health with the institutions. Medical professionals make the diagnosis, but then there are no resources; there is nobody to tell individuals and families what they need to know, or to tell them where they can go. And that is where the institutions come in. We provide information, advice and guidelines... Even after the person has died. Because there are two stages of grief in this type of disease: the first is when the diagnosis happens, and it can increase when the most complicated symptoms of the disease appear; and the second is when the person is no longer there. And if the family do not have much in the way of financial resources, there is a problem. Caring for a person with cognitive impairment costs between 30,000 and 38,000 euros every year. That is a lot of money, and the care can last for many years. Ten, twelve, or more, from the earliest signs of deterioration. The cost of care increases as the disease progresses.

Yes. They are aimed at people with Alzheimer's or any other type of dementia. We explain what it is to the person, and draw up a personal plan to try to stimulate the cognitive functions that are failing, and maintain those that have been preserved.

When the person and their family arrive at the association, we offer an initial appointment free of charge, in which they tell us about their case, we look at their social, psychological and legal needs, and from there we work on an individual basis. One of the objectives when we do the cognitive stimulation and training sessions is that the person has two feelings when they leave the session: that they have done things, and that they enjoy those things. Because we want them to come back. We know that people with Alzheimer's and other dementias stop doing things they enjoy. So our aim is for them to leave the sessions with the feeling that they liked them, even if they do not fully remember them. The exercises are varied, mainly to slow down the deterioration. We work directly on cognitive functions such as attention, memory, reasoning and language, among other aspects. We use both paper formats and specialized digital platforms for cognitive rehabilitation and stimulation.

As I said, people often go to the doctor when the symptoms are very obvious. At the FAFAC we launched a cognitive impairment prevention programme to detect the first warning signs of deterioration, and to be able to refer the person to the doctor as soon as possible. And we have found that people from smaller urban or rural areas are those who want to do this programme the most. We have also found people with moderate or moderate-advanced stages of dementia who had not yet visited a doctor, or received any diagnosis. The fight against underdiagnosis and late diagnosis is also one of the institutions' objectives.

We try to spread the word through social media, town councils, and related institutions. We are also investigating whether having a relative with Alzheimer's makes you more aware of the disease and more willing to participate in this type of programme. Families are often afraid to be told the truth. And this fear is one of the things that we try to work on through the associations. We should not be afraid of developing dementia. Today we have more information and tools. We even have a law that gives us the power to make decisions.

We now have the right to end our lives with dignity.

We are often asked about it. We ask the person when they would like to stop living, in a natural way. Many people say when they can no longer recognize their daughter or son. We give them guidance to enable them to address this issue and to be able to do the necessary paperwork, advised by our lawyer.

Because we do not talk about death socially, we don't know how to approach it. Death is just another part of life. When people have a neurodegenerative disease, they still have control over our lives and how things end, they can decide. And people are often very relieved when they leave it in writing. You also have to work on it with families psychologically. They have to respect the person's decision, whether they take advantage of this right or not.

I try to make them good professionals in the sense of respect for people. One of the values I try to instil in them is that the patient is a person, with a personality, difficulties and a family. Maybe the person is nervous and has some questions. It is not just about conducting a neuropsychological examination. We are psychologists, and there must be psychological support.

We know that, in public healthcare, there is not much time to offer the care we would like. But we have to try. Because the person's perspective often changes considerably, depending on whether or not they have had decent care.

One day, I would really like to stop doing the work I do, because that would mean that the disease no longer exists. That is not going to happen for now. But I would very much like it to become chronic in the initial stages of deterioration, when the individuals and their families still have some quality of life. This would involve discovering new drugs, adopting new approaches effectively, and having greater financial support.

We hope that, one day, when you are diagnosed, they will tell you what to take or what to do to make the disease chronic.