Monday, August 8

Who cares for those who care for people with Alzheimer’s?


“Thank you very much, miss, you do an excellent job.”

With these words, Juan Carlos thanks Susana for the help she offers him to change his position in bed at night. Daily acts such as drinking water, getting up from the seat or even moving have become a world for him. However, this Cantabrian octogenarian always maintains his polite character and thanks the one he considers his caregiver. Since he got sick and his deterioration began, he has been by his side. However, his story is somewhat blurred, sometimes he does not remember all the details or how they met, but he always perceives the immense affection with which he treats him. Susana speaks patiently to her, laughs at each and every one of her jokes and even kisses her forehead when saying goodbye to her. What he does not know is that the person who assists him every day is not the employee of some nursing home, but his own daughter, with whom he has shared more than 50 years. Alzheimer’s disease has caused him to forget one of the most important people in his life, although it has not taken all his feelings. Like Juan Carlos, as stated by the Spanish Society of Neurology, in Spain there are 800,000 people diagnosed with Alzheimer’s who stop remembering every day.

A study carried out by the Spanish Confederation of Alzheimer’s (CEAFA) and the Sanitas Foundation ensures that 76% of caregivers of people suffering from this neurodegenerative disease are women. Susana López is part of that percentage of women who from one day to the next have found it necessary to change their daily routine and customs to serve their relatives: “The day my father was diagnosed with Alzheimer’s, I knew that I would take care of everything he needed. that was necessary, as he always did with me. Seeing how someone so important to you fades little by little is a very difficult and complicated task, but unfortunately you know that there is no other option. The same study cited above also states that 87% of people who care for a family member with this disease do so out of love for the dependent person.

Spain is the third country in the world with the highest rate of dementia, behind France and Italy. The most recognized symptom of Alzheimer’s is memory loss, however, it is only a minimal part of what this neurodegenerative disease encompasses. For this reason, according to data from the Spanish Society of Neurology, between 30 and 40% of total cases are still undiagnosed in Spain. For months, and even years, María Luisa Hidalgo did not understand the strange behavior that her husband of more than 60 years began to develop: “He began with progressive changes in his personality, he was disoriented and confused doing activities that he always They had been part of his routine, but normally you attribute these behaviors to age and you don’t want to think that it could be something else.

The day my father was diagnosed with Alzheimer’s, I knew that he would take care of him as long as necessary, as he always did with me. Seeing how someone so important to you fades little by little is a very difficult and complicated task.

Alzheimer’s causes a high psychological impact on families and caregivers due to the impossibility of finding a cure: “It’s a horrible disease because you know there is no cure, so every day that comes will be worse than yesterday. You enter a well where there is no hope”, says Susana López. In addition, existing medicines only partially relieve some symptoms during the initial stages of the disease, however, when dementia reaches a more advanced stage, there is no drug that can delay or prevent the process. The Euroespes neuropsychologist, Rocío Pego, exemplifies through a metaphor such as the care of a person affected by a neurodegenerative disease: “They have very reduced memory and their ability to communicate. They are castaways adrift in a reality they can no longer understand. The family member is the raft that keeps him afloat, covers his basic and emotional needs, while little by little he gets lost in that dark sea that Alzheimer’s represents.”

The disease is unstoppable and does not rest, so neither do their caregivers. Their time is reduced to caring for the affected person, neglecting their own physique, their social relationships or even their work life. Mental health is also undermined in these situations in the presence of emotions such as guilt, stress or helplessness. “A situation known as “anticipatory grief” occurs: “The family member helplessly witnesses the slow and painful loss of the person he loves, since his personality and behavior change. The memories of him fade, the words are no longer understood, until, when the time comes, the only thing left to do is cling to the memory of what that person once was”, explains the Euroespes neuropsychologist, Rocío Pego.

Because it is a disease whose life expectancy can reach up to ten years, it is convenient to know how to manage the role of the caregiver. It is vitally important to learn about the evolutionary course of the disease in order to know the behaviors that characterize each stage and thus manage them in the best possible way. In addition, the specialist in psychogeriatrics of Psychologists Princess 81, Marta Galindo, recalls the importance of free time and moments of disconnection for caregivers: “They are human beings and as such they need periods of physical and emotional rest. This is especially relevant in advanced stages of the disease, when the patient can no longer communicate verbally and non-verbal language becomes more relevant. People with Alzheimer’s are especially susceptible to aspects such as tone of voice and affectivity, and these are altered when fatigue and stress dominate us”.

The family member helplessly witnesses the slow and painful loss of the person he loves, as his personality and behavior change. The memories of him fade, the words are no longer understood

Dew Pego
Euroespes neuropsychologist

One of the most difficult moments for family members who care for people with Alzheimer’s is making the decision to transfer the patient to a nursing home: “There comes a point where dependency is such that it is impossible to care for someone like that at home . I have spent days without sleeping caring for my husband, but when the disease progressed he could not even get him out of bed, ”says Maria Luisa. However, for the caregivers, it is not at all psychologically simple: “These are extreme situations in which negative thoughts come to mind such as ‘I should not leave him in a residence, my obligation is to take care of him’, ‘he will think that he I’m leaving’ or ‘only with me will he be well taken care of’”, says Susana López based on her own experience. Knowing how to delegate the care of the patient is a complex process, but one that, in the long run, will benefit both parties: “Just as we entrust our health and our lives to medical personnel when we are sick, we must also trust that the care provided by other professionals will guarantee our relative a better quality of life”, affirms the Euroespes neuropsychologist, Rocío Pego.

The most common cause of dementia among the population is Alzheimer’s. In addition to the personal costs that this disease causes daily, its price is also high. According to the Dementia Report of the Spanish Society of Neurology, assisting this type of patient is between 27,000 and 37,000 euros per year. However, according to a study carried out by the member of the Behavior and Dementia Group of the Spanish Society of Neurology, Alberto Villarejo, 87% of these costs are assumed by the relatives of the patients. Iñigo Ortiz, suffered from this dementia within his family and denounces the economic difficulty that it can cause for thousands of people: “It is a disease with very high economic costs, given that, first of all, nursing homes in Bilbao cost an average of 3,000 euros . On the other hand, if you decide to take care of the patient at home, you will have to buy materials such as adjustable beds, urinals, cushions or anti-fall tapes that, when sold in specialized stores, are not cheap either.

People with Alzheimer’s are especially susceptible to aspects such as tone of voice and affectivity, and these are altered when fatigue and stress dominate us

Martha Galindo
neuropsychologist specializing in psychogeriatrics at Psiclogos Princesa 81

The World Health Organization warns of the urgent need to give higher priority to dementias within public health. Today, only 14 of the 194 countries that make up the WHO have a national plan in place for this type of neurodegenerative disease, despite the fact that it is estimated that worldwide they affect more than 50 million people, more than the entire Spanish population. Research and development are essential to continue advancing in the search for a cure that puts an end to the suffering of millions of patients and their families around the world.



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