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It all started in 2017. Ildefonso Fernández began to suffer from episodes that were not normal, more and more frequently. “One day when I went to the company at dawn, without knowing how or why, I ended up in my town. Another, I went to the garage of my previous home, and I had already been living in the new one for many years. And another day, without realizing it, I arrived at the hospital to see my father-in-law, and it had been more than two years since he had passed away”.
At first Ildefonso did not want to comment on anything at home, but when one day, getting lost on the way to work, he almost had an accident due to a sudden maneuver with the car, he decided to tell his family and ended up going to the doctor.
In April 2017, at the age of 58, he was diagnosed with Alzheimer’s disease. Currently, Idelfonso is a member of the CEAFA Panel of Experts on People with Alzheimer’s (PEPA).
The first moments were very complicated and difficult. “We could not believe the diagnosis. We had a very stigmatized disease and we believed that soon we would not meet anyone. It all seemed very complicated,” she says.
His life underwent a radical change. “I was forced to leave my job, because the diagnosis of this disease is linked to a loss of the ability to perform work, voluntary or involuntary. You can’t choose.”
Day-to-day life is very complicated, he admits, “because of all the little things I forget (glasses, house keys, mobile phone, people and names of people I’ve met recently that I forget, etc.), but the rest and The important thing is that I’m doing quite well”.
Ildefonso tells us about the stigma of Alzheimer’s disease. “The stigma of this disease means that in many cases you become a strange person and lose, without knowing the cause, the trust of these people.”
“For me, the important thing is family and friends. In my case, I can say that my family’s response has been exemplary. I have had the support of my wife, my children, my sister, my brothers-in-law and my nephews. They have been and are a pineapple around me. This is the bottom line,” she says proudly.
“The most important thing is the presence of my wife, Inés, by my side always worrying,” he acknowledges.
According to the Spanish Alzheimer’s Confederation (CEAFA), 1.2 million people live with Alzheimer’s disease in Spain and the World Health Organization (WHO) forecasts that the total number of people with dementia will reach 82 million in 2030 and 152 million in 2050.
Spain is the third country in the world with the highest prevalence of dementia. 80% of people with Alzheimer’s disease are cared for by their family.
In addition, we must not forget that the disease has a great economic impact: the direct and quantifiable one that derives directly from patient care, direct healthcare and non-healthcare; and indirect: those costs that correspond to non-reimbursed services, such as the time spent caring for the patient by their family environment, the loss of productivity of both the patient and their caregivers, or health expenses derived from the caregiver’s burden.
Also, the social impact of this disease is devastating because it has an overwhelming effect on the families of those affected and their caregivers.
According to the report ‘Social Impact of Alzheimer’s Disease and other Dementias’ by the Fundación Cerebro, it is estimated that patients with Alzheimer’s disease require about 70 hours of care a week, which includes attention to their basic needs, control of medication, health care and management of symptoms and eventual conflict situations.
The aforementioned report indicates that dementia is the chronic condition that generates the greatest dependency, above others such as stroke, Parkinson’s disease or cardiovascular diseases, with 88.67% of all people in this situation.
In addition, this dementia is one of the main causes of institutionalization in the countries around us.
Spain approved a Alzheimer’s Comprehensive Plan and other dementias in the period 2019-2023. A plan, explains Mariló Almagro, president of CEAFA, which “was born as a public health challenge and as a social and health priority.”
Almagro states that “there is a clear need to offer adequate, specific and comprehensive responses to people affected by some type of dementia from the different social and health protection systems, considering the binomial (patient-caregiver) throughout the disease” .
This plan, he continues, “was designed by all the agents that in one way or another are directly related to this disease. From those who provide services, to those who represent and defend, create laws, investigate, have direct contact with them and their families and with those affected, people diagnosed with Alzheimer’s. For this reason, all of them promote the comprehensive plan day by day based on 4 interrelated lines of action around the indissoluble figure of the person with Alzheimer’s and the family caregiver”.
The Plan, he affirms, “places the person in the center of socio-health care that revolves around the sick person as the caregiver”. “Alzheimer’s is the paradigm of dependency”, hence the socio-health care model must “integrate the binomial by adapting its social and health policies”, says Almagro.
“Any plan, policy or strategy that is put in place must overcome the current situations of inequality and territorial inequity that exist today due to the fact that we have decentralized healthcare,” adds the president of CEAFA.
On the other hand, the demand for an early diagnosis is highlighting a new scenario, people with diagnoses before reaching the age of 65who face situations that are very different from those whose diagnoses occur at older ages, such as: being of working age, having adolescent children studying, being caregivers for their own parents.
In this sense, Dr. Mercè Boada, neurologist and medical director of Ace Alzheimer Center Barcelona, highlights the great importance of early detection. “Identifying dementia early has multiple advantages for both affected people, their environment and researchers.”
Thanks to early detection, people can access treatment options earlier, as well as control risk factors, which will allow them to maintain their autonomy for longer. In addition, early detection allows the diagnosed person to express their wishes about how they want to be cared for later or about legal documents.
“One of the most important lessons that research has given us over the years is that the phase in which the treatment is applied is key to its success. It is a cycle: researching the disease and the biological markers of the onset of dementia allows us to develop new treatments or find new therapeutic targets to affect deterioration. At the same time, this knowledge acquired through research allows us to deploy different strategies to reach more people who could be at risk of developing dementia and offer them this early diagnosis, which has multiple advantages”, says Dr. Boada.
In this sense, he points out Sérgio Teixeira, CEO of Biogen that “early diagnosis is essential for the strategic management of the disease in an agile and sustainable manner within the framework of the national health system. Awareness about the importance of going to the doctor when the first symptoms appear, without confusing them with the normal aging process, will contribute to the creation of a new scenario in this pathology. Thanks to innovation and collaboration between the agents of the health system, and for the first time in a decade, dialogue has been opened and solutions are proposed on the table for this disease. At Biogen we are convinced that this is the way forward, which is why we maintain a strong and courageous commitment to improving the quality of life of patients with Alzheimer’s disease and their families.”
Recently CEAFA, in collaboration with Biogen, has organized in the Congress of Deputies a day of debate on the importance of early diagnosis in Alzheimer’s disease.
The president of the Health and Consumption Commission, Rosa María Romero Sánchez, was in charge of opening this congress, under the title ‘Early detection and early diagnosis. New paradigms in Alzheimer’s disease’, which focused on the youngest segment of the population suffering from this pathology. Topics such as the need to implement specific policies on dementia were also addressed, as well as the importance of investment and research to help provide solutions for a disease that diagnoses 40,000 new cases each year in our country. Biogen-160176 (MAR 22)
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