Her “exceptional” language (as determined by her neurologist) hides the illness that actress Carme Elias (Barcelona, 1951) has been suffering from for four years. It’s Alzheimer’s, and despite being “evil” and “delicate,” Elias looks it in the face. “I am fully aware that I will not be able to enjoy all these developments.”
This is the first thing he said yesterday from the Modernist Complex in Sant Pau, where he participated in a dialogue, for more than two hours, about the disease with Cristina Maragall (daughter of former President Pascual Maragall, who has had Alzheimer’s for 16 years) and Albert Liu, head of the Neurology Department at Sant’An. Paw. Leo is the doctor for both Elias and Maragall. It was he who diagnosed both. An introductory video clip of the lecture discussed the developments of the disease and its future. But Elias, thorough, elegant and energetic, knows it is too late for her.
Alzheimer’s disease is the disease that worries Spaniards the most after cancer. It affects one in ten people over the age of 65. Due to an aging population, cases will triple by 2050. The World Health Organization has described it as the epidemic of the 21st century. The conversation between Elias and Marajal succeeded in filling the Sant Pau hall. “It’s very difficult. You go through a phase where you want to die. But life has brought me new things, like the publicity for Alzheimer’s disease, which I know one day will become the flu,” the actress explained. She stars in the documentary Mientre seas tú, directed by Claudia Pinto and nominated for the Goya and Gaudí Awards.
“I ask for a dignified death when my words are distorted into an indecipherable language. […] “When the sounds I like don’t make me smile,” Elias says in part of the feature film played during the talk. This is what she wrote in her advance wishes document. “I’ve always talked about it, it’s an obsession,” Elias admitted to the audience. She is also the author of When I Stop Being Me, in which she also addresses her illness.
“There are few people who explain in detail everything that’s going on,” Dr. Liu said of Elias’s testimony. “It’s very important to make this very early stage of Alzheimer’s known.” Elias’s “extraordinary language” made it “difficult” to detect his slight disability.
Among other things, because “memory loss at a certain age is relatively common.” “I said to myself: ‘You’re okay,'” Elias recalls. “At first I thought: ‘Maybe they made a mistake?'” In his case, the symptoms started in 2019 when he started forgetting his scripts while filming. She knew it wasn’t stress. “They would say ‘Work!’ “And I was trembling internally and could not pronounce the text. I could see how people looked at each other.
As Liu recalls, memory loss is not limited to Alzheimer’s disease. More symptoms are needed to diagnose this disease. “The memory loss in Alzheimer’s disease is very intense and noticeable. You can forget an entire event, for example. Memories get mixed up. But a biological tool is needed.” [una punció lumbar] To confirm the diagnosis, which is always done after cognitive testing,” explained the neurologist.
Which matters
Researchers are looking for signs in the blood to detect them, in the near future, through blood tests. Around 2025, the first drugs (already approved in the USA) that slow the progression of the disease will arrive in Spain, because existing drugs (and in use since 2003) only treat the symptoms.
Like Elias, former mayor Pascual Maragall also needed, 16 years ago, to announce that he had Alzheimer’s disease. “It was his last public act,” recalls his daughter, Cristina Maragall. His 82-year-old father is “physically fine,” continuing the same routine as 16 years ago, “but his world is getting smaller and smaller.” “I think we were able to make him happy because he is very expressive. I still recognize my father sometimes, and that’s what matters to me. I don’t care when he stops recognizing me, because I know he’s happy to see me,” he recounted.
Risk factors
Alzheimer’s disease includes not only memory loss, but also personality changes (disinhibited behaviors, for example), loss of language (Maragall suffers from agnosia: the inability to read, but retains speech and hearing) and the inability to perform very basic tasks.
There are “risk factors” for developing Alzheimer’s disease, such as pollution, cholesterol, diabetes, hearing loss and obesity. “There are public health measures you can take to prevent Alzheimer’s disease,” Dr. Liu said. Making an “early diagnosis” is key for several reasons, but it also gives the patient the opportunity to “be able to choose.”
Since his diagnosis, Elias has lost the desire to read, but he writes nonetheless. “I keep a diary and write down things that happen to me,” she revealed. He feels useful by talking about the disease and filming the documentary. “I hope it will be useful when this disease is actually overcome, and that it will remain as a trace of how twisted and subtle it is. It will be useful for me to be active in what I liked most, which was my professional life.”
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