2024-10-20 15:32:00
Investigation. “This is the only thing that helps us find something else, to know how it happens.” Luisa is clear. She believes that the way one can decipher why neurodegenerative diseases run in her family is “a fund in the income to support research”. Her father died of ALS (amyotrophic lateral sclerosis) and her mother lives trapped in the devastating consequences of Alzheimer’s disease.
That determination is enough to become one of the first volunteers of the program of the Center for Research on Neurological Diseases (CIEN) Foundation to find key clues about disease in the general population. Below the acronym SCAP-AD, who respond to cognitive screening and personalized approach for Alzheimer’s and other dementiasincludes a series of tests that seek to validate new diagnostic methods reproducible in the general population in the early diagnosis of neurodegeneration. “When they told me I had no doubts,” says Luisa.
That’s a program look for signs of Alzheimer’s“how it hides in healthy people, who don’t know they will have it, but have genetic traits that predispose them,” he explains Pasquale Sanchezneurologist and Scientific Director of the foundation, attached to the Carlos III Health Institute, which enjoys the support and additional funding of the Reina Sofía Foundation. They invite everyone into the studio. Some of these can be done using online tools. Another is held at the foundation’s headquarters. “We are in an early stage and we will see how it will be transferred to other centers.”
Through the projectscapad.co.uk websiteIf you are over 60 you can take a test that assesses your risk of developing cognitive impairment in the coming years. “We have validated a series of digital tools which allow us to distinguish, based on the results obtained, who has some features of Alzheimer’s or who has a greater risk of dementia,” explains Sánchez. The neurologist distinguishes the two parts of the program at your fingertips. “One of them is a digital cohort which will allow you to explore the use of an online cognitive assessment through a web platform.
On the other hand, “it will generate a broad clinical validation groupalso aimed at people over the age of 60, without a diagnosis of dementia. In this case the studies require other types of tests «to carry out a more in-depth study» specifies the neurologist. “This includes neurological and neuropsychological assessments, biomarker analyses, including ultrasensitive blood techniques and MRI testing.”
This is because one of the tests performed is an MRI with one of the most advanced equipment in Spain. «There is no other in our country and it allows us to capture details that others cannot», underlines the director of the center. What escapes the clinical eye and the researcher to make that diagnosis? «We are faced with a disease in which there is no single failure or pathological source. There are many of them and we need to see how each of them affects,” acknowledges Sánchez.
Luisa and Jesús, together with Pascual Sánchez, neurologist and director of the CIEN Foundation in the Magnetom Cima.X resonance room.
Early diagnosis is key. «Maybe we don’t have the drugs available in Europe now. But it’s a matter of time,” encourages Sánchez. These drugs arrive late for the most worsened patients, but early for all those cases that do not yet have the label of dementia or Alzheimer’s. Because the projections for the increase in cases are catastrophic.
Over the last 30 years The number of deaths from neurological diseases increased by 39% and the years of life with disability by 15%, underline the Spanish Society of Neurology (SEN). In the last 10 years the number of people suffering from diseases such as Parkinson’s and dementia such as Alzheimer’s has doubled.
And the cascade of figures outlining its impact is shocking: Currently around 800,000 Spaniards suffer from Alzheimer’s (1.2 million according to CEAFA)but it is estimated that 80% of mild cases go undiagnosed; Therefore, between 30 and 40% of total cases go undetected.
“Getting to the stage my mother is in now, so deteriorated, was slow. I know that in others it goes faster”
find those Initial characteristics and diagnosis is the key to stopping the disease before it progresses to stages in which neuronal damage steals the person’s autonomy and “it is difficult to go back”, agrees the neurologist. The web platform «is a study in which the volunteer answers a series of questions on demographic and clinical data. Additionally, take a short, one-minute spontaneous speech test. The results will be used in this study for research purposes,” explains Isabel López, coordinator of SCAP-AD.
The Spanish Confederation of Alzheimer’s and Other Dementias (Ceafa) joined the project, “with which we collaborated to review the tests and questionnaires”, explains Sánchez. Through these tests, natural language is used to determine risk, “the way we are able to describe the image of a beach hides a series of patterns that determine risk”, explains the neurologist. Furthermore, 13 centers from eight autonomies are participating and it was possible thanks to the funding of The European Union’s Next Generation funds.
Why volunteer against Alzheimer’s?
Luisa is motivated by her mother’s situation, an independent woman who has seen fade away little by little. «Getting to the stage it is at now, so deteriorated, was slow. I know that in others it goes faster. «In my family the only thing we had was leukemia. But neurologically my mother is the only one who had Alzheimer’s and my father was the first to have ALS. When carrying out the study on Luisa they found a neuronal polyneuropathy, «but it has nothing to do with this. I know,” he nods looking at the director of the CIEN Foundation.
“They are very generous people,” stresses Sánchez. Jesús, another volunteer, understands it as a return generosity. “With everything they’ve done for my wife, and nothing less!” He gets emotional while talking about his wife’s situation. He has been in the residence in the foundation complex for about six months. “We were very lucky, I know, to end up here.”
Jesus says it He has been living with Alzheimer’s for more than ten years.«but then we didn’t believe it would end like this. “Don’t think about it.” He admits it’s tough, his face leaves no doubt. Seeing how the traveling companion he chose “forgets almost everything” is “a ruin”. His eyes were almost full, but he says that “when they told me they were investigating I didn’t hesitate. If it’s not for her, it will be for others.
“There are many types of patients, each with an evolution. The program will help us find the details we are missing”
For those who come behind, says Luisa. “My mother is now 94 years old, but has had the disease for more than 20 years.” How can you live with neurodegeneration for so long? “It’s not known,” Pascual acknowledges. There is no typical profile, «there are many types of patients, each with a different evolution. “That’s why we want to know more through programs like this, which help us reveal the secrets, the details that escape us.”
These changes can be revealed thanks to the latest generation technology they have acquired at the center. This is the first unit in Europe of Magnetom Cima.X, a system developed by Siemens Healthineers. Sánchez shows off the new equipment when we go down with the volunteers to visit the machine. “The truth is, it doesn’t feel overwhelming,” says Luisa. “Everything was very fast,” adds Jesús.
In addition to the online test, analysis and lumbar puncture, both underwent MRI to examine the corners of their hemispheres, the brain… “The level of detail is very high,” says Sánchez. The images captured allow us to see if there are any injuries in the temporal and parietal lobes, which give rise to symptoms of dysphasia or dyspraxia; especially if they are patients with a family history. Damage is also observed in the hippocampus, temporoparietal and frontal cortex, in the general population where dementia begins later.
Along with the images, Sánchez highlights the plasma analysis, in addition to the lumbar puncture. “You also need to know about genetic biomarkers in the blood, because it has already been shown that they can be used to find clues about neurodegeneration,” he emphasizes. Then, “With everything we achieve we can ensure that these new technologies are precise and economical apply them to a large population”, says the neurologist who develops a sort of refined early diagnosis protocol. «It is not a question of a single test or test, it is certainly more accurate to have several. And, independently or combined through artificial intelligence, they will offer us the answers.
The importance of early diagnosis of Alzheimer’s
Detecting the early signs of the disease” will make this possible interventions at a very early stage», underlines Sánchez. Sometimes, those first moments go unnoticed by family members: “The patient already realizes he has something, but doesn’t know what to do.”
«My mother had a phase where she hid her symptoms. His life was very mechanical (orderly). I had general answers. What did you eat, mom? Puree of what? And here it is, with vegetables. Which? I don’t know.” Luisa looks at Sánchez during the conversation we have with the volunteers and the researcher, looking for complicity in his answer.
“When they told me they were investigating I didn’t doubt. If it’s not for her, it will be for the others”
«There are stages with common symptoms shared by patients. And yes, the automatic response to everything is a feature,” says the neurologist. Jesus remembers that phase when his wife said yes to everything. «Shall we go out? All right. Shall we eat out? It’s fine.” He acknowledges that “at the beginning we didn’t give importance to it, we didn’t even think about the disease. But little by little it took hold of her.
Even if there are things that are never forgotten. «There are songs that you remember, that we sing». Jesus smiles in the hope that it is a positive symptom of the disease. “In fact, music is stored in another part of the brain that takes longer to damage,” Sánchez responds to the doubt.
But before it sounds like a bucket of cold water, the neurologist is quick to say that “patients do not lose connection with family memberswith those closest to you. We know that a connection remains that allows them to be recognized. “They always know you’re there.”
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