English Version | Where is my mind?

It was a day like many others. The same city, the same routine, the same route. Only that day, Fernando took the wrong road. The road he had traveled for years had now become strange to him. Sitting next to him in the car was his wife, Zé, who, despite being surprised by the mistake, didn't think about Alzheimer's - at least not at that moment. "You don't notice the first signs... He [Fernando] began by forgetting trivial things, like the route he walked every day, but I thought 'from a certain age onwards, people start to forget things too'. Over a long period, more than a year, you don't realize it. In Fernando's case, at least, it [the development of Alzheimer's] was very slow at first. It must have started around the age of 66." Fernando is now 68. Diagnosed with Alzheimer's about a year ago, but it wasn't immediately that the symptoms revealed themselves. "[Alzheimer's disease] is a progressive brain disease that initially affects memory, and then can affect other cognitive activities, such as language, reasoning ability, behavior, among others," explains Rui Araújo, vice-president of the Portuguese Society of Neurology. He goes on to explain: "Initially, the disease manifests itself through a memory defect, i.e. people have difficulty retaining new information. They can become very repetitive. Later, there may be difficulties in understanding everyday situations, speaking, expressing oneself, orienting oneself in time and space, and, finally, difficulties with walking and balance." When he was diagnosed, Fernando was quickly put on medication. But only - as his doctor pointed out - to slow down the process. "A very relative delay...", as Zé explained in a conversation with Vogue. The fact is that the symptoms of Alzheimer's usually begin subtly.

People whose disease develops while they are still employed may not be as efficient at their jobs as they used to be. In the case of people who are retired, and therefore less active, the changes may not be as noticeable. The first - and most noticeable - symptom can be said to be the forgetting of recent events since the formation of new memories is difficult. Sometimes people can become emotionally numb, depressed, fearful, or anxious. Zé says that getting her husband's driver's license back was complicated: "The neurologist had given him a paper so that he could see a psychologist and then have his license taken away. But it was very difficult. As soon as we left the psychologist's office, in between some nonsense, he said: 'he [the doctor] thinks he's going to take my license away, that's what he wanted! Then we managed to hide the car key and got the car out of the garage - we told him the car was at the mechanic. It was the only chance we had of him not going down to the garage to get the car." This was also because Fernando used to leave the house at night. "He would wander around," Zé recalls. "I even had to call the police to come after him. We were all looking for him. He could get out of the house without making a sound and I couldn't hear a thing. The next thing I knew, he was long gone. I started sleeping with the door locked." The moments of lucidity for someone diagnosed with Alzheimer's are very few. The person becomes, in a way, infantilized. "It's dementia, really," says Zé. "It's a horrible, irreversible disease. And once it's set in, there's nothing more you can do." According to the vice president of the Portuguese Society of Neurology, the term dementia "applies to a situation in which the person already has severe cognitive deterioration to the point of needing help from others for everyday tasks. There are several types of dementia. Alzheimer's disease is the most common cause of dementia." Fernando's wife confirms: "He couldn't communicate, he no longer knew who I was. The only person he recognizes is Luís, one of his brothers and also the one closest to him. Ever since he was a little boy, the two of them were always together, that may be why..."

Known above all for being the first author to recognize the neurodegenerative disease that today bears his name as a distinct pathognomonic entity, Alois Alzheimer was a German psychiatrist and neuropathologist. In 1901, this neurologist's life crossed paths with that of Auguste Deter. Years later, this patient would make the doctor famous all over the world. Before his eyes, the neurologist had a strange case that he had never seen before. "The patient is sitting up in bed with a helpless face. What's her name? - Auguste. - What's her husband's name? - Auguste, I think. She doesn't seem to understand the question." Loss of memory and comprehension, aphasia, disorientation, unpredictable behavior, paranoia, and a marked psychosocial disability were some of the symptoms manifested by the 51-year-old German housewife. Born in a small town in the German state of Bavaria, Alois Alzheimer was born on June 14, 1864. He began his medical studies in Berlin, the capital of Germany, at the express request of his father, a notary public by profession. A year later, he decided to return to his hometown to finish his studies at the University of Würzburg in 1887. From then on, he devoted himself to psychiatry, neuropathology, and the study of mental illness. Shortly after graduating, at the age of 23, he was hired as a private doctor for a woman suffering from mental disorders. He traveled with her for five months and was able to closely monitor the progression of her illness. After this experience, he was hired by a Municipal Asylum for the Demented and Epileptic in the German city of Frankfurt. There, he specialized in research into the tissues of the human body and the cerebral cortex. He also met the prestigious neuropathologist Franz Nissl, with whom he shared a laboratory, establishing a deep friendship. The two researchers conducted several neuropathological studies on patients with mental disorders. In the early 1900s, Alzheimer "was obsessed with the idea that psychiatric illnesses were like other illnesses," Conrad Maurer, professor emeritus of psychiatry at Goethe University in Frankfurt, told the BBC. He thought that "just as there were diseases of the body, there were also diseases of the brain." According to Maurer, the psychiatrist was determined to find a case to prove it. It was then that he met Auguste Deter who, from 1901 onwards, had become forgetful, delirious, and would scream or cry for hours on end in the middle of the night. When he met her, Alzheimer said, "That's my case," says Maurer. The neurologist kept a detailed medical history of Deter, found in the 1990s by Maurer's team, then director of the same psychiatric hospital where Alzheimer worked. The psychiatrist had written down all his questions and observations about the patient's condition. "I show her a pencil, a pen, a purse, some keys, a diary, and a cigarette, and she identifies them correctly", "When she has to write 'Dona Auguste D.', she writes 'Dona', and then we have to repeat the other words because she forgets", "The patient can't progress in her writing and repeats 'I lost myself'." 

Rui Araújo points out that Alzheimer's disease "occurs more frequently in people who have other uncontrolled medical illnesses, such as high blood pressure, diabetes mellitus, people who smoke and don't exercise, for example." However, he assures us, that it's not that easy to prevent dementia from occurring: "It's estimated that up to 40% of dementia cases can be prevented through healthy lifestyles. Even so, in the majority of cases, it is a clinical situation that may not be possible to avoid." With the facts come the consequences: the difficulty of living with, caring for, and protecting someone with this health condition. The doctor explains that, initially, "patients recognize the symptoms, but as the disease progresses, the person can become progressively more dependent, and usually no longer recognizes themselves as a patient." It's a disease that requires greater vigilance and, more often than not, permanent care and supervision. "While Fernando was still active, he was in a day center for a few months. There are no vacancies in nursing homes - either paid or unpaid. But we managed to find a place at the Lar de Terceira Idade do Caramulo, a senior residence with geriatric care for elderly people of all levels of dependency and need," says Zé. He says that the move to the center went well: "There's a staff member there who is very loving towards him and who took him in very well. These are people who already know how to deal with this type of patient... He no longer has moments of lucidity. He laughs at anyone who says something funny to him. He always finds monkey business very funny. But he lives in his world. He lives in a bubble, but you can tell he's fine. He feels good there [in the home]. It makes me happy to see that he's doing well." For the vice-president of the Portuguese Society of Neurology, "support is necessary, requiring a lot of time, patience and also financial availability. Often the caregivers themselves may need help or psychological support." I'd like to take this opportunity to ask you about early-onset Alzheimer's. I think it's one of those things that only happens in movies, but I know that's not the case. "There are rare situations, for example genetically determined, in which the disease can appear at a young age (from the 40s and 50s, for example). But these are very rare situations," he tells me. Those who are more prone, despite the random factor of this condition, are "people in whose families there have already been cases of Alzheimer's disease that appeared at a young age; and also people with uncontrolled vascular risk factors (e.g. active smoking and unmedicated high blood pressure)." Alzheimer's is a disease that affects the patient and those around them. Since it cannot be cured in most cases, all that remains is a lot of love and courage. As Leeza Gibbons, author of The Caregiver's Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One, writes, "caregivers of people with Alzheimer's are heroes."

Originally published in The Memories Issue, from April 2024. Full stories and credits are in the print version.