” Alzheimer’s is horrible for the patient, it isolates him in his own body, but it is also horrible for the family,” says José Antonio Reyes, a neurologist at the Malaga Regional Hospital. What was once a reasonably predictable life becomes an unsolvable puzzle, among other things because forgetting the most fundamental experiences is not the only symptom of the disease: the problems to communicate and understand others are also devastating. The vocabulary decreases, the patients stop understanding concepts and, in the long term, having a conversation with them becomes impossible.
“They are people who listen through the skin. A caress, a kiss or a hug tells them much more than a phrase they do not understand,” says Reyes, who also works at the Quirón hospital in the Malaga capital. Establishing adequate contact with them requires mastering two keys: saying as much as possible in the fewest number of words – which must also be simple – and relying on non-verbal communication.
The importance of empathy
Some 800,000 people suffer from this disease in Spain, and 40,000 new cases are diagnosed each year, according to the Spanish Neurology Society. Worldwide there are 47 million people with Alzheimer’s, which will be 130 in 2050 due to increased life expectancy and an aging population, according to the World Health Organization. Scientists still don’t fully understand the mechanisms that erase patients’ identities, and the origin of the disease remains a mystery, although it has been linked to the accumulation of proteins in the hippocampus, a region of the brain that controls memory. Bite-by-bite, these molecules, known as beta-amyloid proteins, end short-term memories first – hence the forgetfulness of recent situations or conversations that characterize the early stages of the disease. Then, little by little, they destroy other faculties, and language is one of the fields that is most affected from the beginning.
Expression, literacy, and verbal skills gradually fade, while judgment and understanding disappear. The process is not aseptic when it comes to emotions but quite the opposite. “People become stiff, more irritable and apathetic,” says Reyes. “And communication becomes complicated, something that ends up affecting the patient and his relatives,” he adds. That is why the doctor always recommends families to count on the help of an organization to support Alzheimer’s patients, among which is the Bezmiliana Association of Caregivers and Alzheimer Patients, located in Rincón de la Victoria (Málaga).
There they offer every Friday a workshop for people who care for those who suffer from the disease, whether they are family members or professionals. It is a space where experiences are shared and where you learn, among other things, to develop the most complete communication possible.
When neurodegeneration is in a mild phase, the main recommendation is that contact be established through short and direct sentences “because the patients are going to be left with only the latest,” says Arminda Albarracín, a clinical psychologist at this entity that cares for 25 patients who come to the workshops daily. Albarracín advises not to speak fast or loud because, after those tones, they can perceive anger. “You don’t have to talk to them like a small child, either,” he clarifies. Standing in front so that your face can be seen and gesturing as little as possible are two equally important guidelines.
In those first steps of Alzheimer’s, patients lose vocabulary and may have trouble expressing concepts as simple as “glass.” “They will say ‘pass me the gossip’ or ‘bring me that thing’, they will even give turns like ‘give me that which is good for drinking”, adds Mónica Pérez, also a psychologist and director of the Association of Relatives of Alzheimer’s Patients in Cantabria. The professional asks for empathy. It happens to all of us that, at any given moment, we don’t get a word out or we have a name on the tip of our tongues but we don’t finish saying it. “Well, that happens to them continuously,” says the specialist. If we help them come up with the concept that they cannot express, they will notice it.
The memory is in the kisses
As the disease develops, the conversation becomes more and more complicated because the language becomes very reduced, the same as the understanding. “You have to use short sentences and words that say a lot,” insists Pérez, who also recommends that there should be no group conversations because people with Alzheimer’s lose the thread and isolate themselves, and that the talks become increasingly simple. Of course, you have to spend more time on any conversation: the rush must disappear.
Once degeneration progresses and reaches a moderate phase, communication should be more careful, if possible. The sentences have to be even more simple and brief, and it must be taken into account that there will come a point, sooner or later, when sick people neither understand what they are told nor know how to express what they feel. This is where nonverbal language comes into play more than ever , and it does so in both directions. From the point of view of the sick, for example, if they do not remember the word or can hardly express a concept, how do they indicate, for example, that they want to go to the bathroom?“You have to learn new signs. In that case you have to see how the person gets up, becomes more restless, wants to open a door, feels discomfort … you have to have a lot of eye for these things,” insists Arminda Albarracín. Relatives and caregivers must develop communication resources such as pointing to a coffee maker to accompany the question of whether you want a coffee, thereby achieving a better understanding of the message you want to communicate.
Finally, silence comes. Language is completely lost or turned into single words or sounds. This is where non-verbal communication takes on special importance . “Through love, patience and respect, much more is achieved than if we lose our nerves,” adds Albarracín. She always recommends to the family the book Memory is in kisses, which highlights that once verbal communication is lost, caresses, smiles, hugs, short walks and games are essential to maintain the link. “They perceive the emotional component and that suits them very well”,Rivets the neurologist José Antonio Reyes, who highlights that, although there is still much to discover about Alzheimer’s, it is known that it is a preventable disease. How?
It is as easy as maintaining healthy habits. “Not smoking, not drinking, having a socially and intellectually active life, a balanced diet, resting well … basic things that we do not always control and that help the disease not appear or do so as late as possible. It is something that is in our hand “, concludes with optimism specialist from the Regional Hospital of Malaga.
CHANGE OF PAPER TO ENTER YOUR WORLD
People with Alzheimer’s disease end up not being able to remember who is in front of them,Or yes they remember but they have frozen the image of how it was many years ago. The oldest memory layers are the ones that persist the most and, for this reason, specialists such as the director of the Association of Relatives of Alzheimer’s Patients from Cantabria, Mónica Pérez, recommend adopting the role assigned by the patient. “If that person insistently believes that his wife is actually his mother and addresses her like this, why go against him? That is his reality and I am in favor of respecting him. It is as if he asked about someone who died 20 years ago. When you tell him, he grieves, it’s like he’s died again. And probably ten minutes later he will ask you about that person again. Are you going to make him go through that pain again? “He asks himself.