Auguste Deter ( 16 May 1849 – 8 June 1906) is the first person diagnosed with Alzheimer’s disease. Her maiden name is unknown. She married Karl Deter in the 1880s and together they had one daughter. Auguste had a normal life. However, during the late 1890s, she started showing symptoms of dementia, such as: loss of memory, delusions, and even temporary vegetative states. She would have trouble sleeping, would drag sheets across the house, and even scream for hours in the middle of the night.
Karl could not take it any more. Being a railway worker, he had to admit her to a mental institution so that he could continue to work. He brought her to the Institution for the Mentally Ill and for Epileptics in Frankfurt, Germany, on 25 November 1901 where she was examined by Dr. Alois Alzheimer. He asked her many questions, and later asked again to see if she remembered. He told her to write her name. She tried to, but would forget the rest and repeat: “I am lost.” (German: “Ich hab mich verloren.”) He later put her in an isolation room for a while. When he released her, she would run out screaming, “I do not cut myself. I will not cut myself.” Her words have been commemorated in an important work, commissioned by the Susquehanna Valley Chorale, composed by Robert Cohen and librettist Herschel Garfein, entitled “Alzheimer Stories”.
After many years, she became completely demented, muttering to herself. She died on 8 June 1906. More than a century later, her case was re-examined with modern medical technologies, where a genetic cause was found for her disease by scientists from Gießen and Sydney. The results were published in the journal The Lancet Neurology. According to this paper, a mutation in the PSEN1 gene was found, which alters the function of gamma secretase, and is a known cause of early-onset Alzheimer’s disease.
Rediscovery of Auguste Deter’s medical records
In 1996, Dr. Konrad Maurer and his colleagues, Drs. Volk and Gerbaldo, rediscovered the medical record of Auguste Deter. In it Dr. Alzheimer had recorded his examination of his patient,
“What is your name?“
“What is your husband’s name?“ – she hesitates, finally answers:
“I believe … Auguste.“
“How old are you?“
“Where do you live?“
“Oh, you have been to our place“
“Are you married?“
“Oh, I am so confused.“
“Where are you right now?“
“Here and everywhere, here and now, you must not think badly of me.“
“Where are you at the moment?“
“This is where I will live.“
“Where is your bed?“
“Where should it be?“
Around midday, Frau Auguste D. ate pork and cauliflower.
“What are you eating?“
“Spinach.“ (She was chewing meat.)
“What are you eating now?“
“First I eat potatoes and then horseradish.“
“Write a ‘5’.”
She writes: “A woman”
“Write an ‘8’.”
She writes: “Auguste” (While she is writing she repeatedly says, “I as good as lost myself.”)
Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and ‘whininess’. They could not let her wander around the wards because she would accost other patients who would then assault her. It was not the first time that Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Deter piqued his curiosity because she was much younger. In the weeks following, he continued to question her and record her responses. She frequently responded, “Oh, God!”, and, “I seem to have lost myself”. She seemed to be consciously aware of her helplessness. Alzheimer called it the “Disease of Forgetfulness”.
In 1902, Alzheimer left the “Irrenschloss” (Castle of the Insane), as the Institution was known colloquially, to take up a position in Munich but he made frequent calls to Frankfurt inquiring about Deter’s condition. On 9 June 1906, Alzheimer received a call from Frankfurt that Auguste Deter had died. He requested that her medical records and brain be sent to him. Her chart recorded that in the last years of her life, her condition had deteriorated considerably. Her death was the result of sepsis caused by an infected bedsore. On examining her brain, he found senile plaques and neurofibrillary tangles.