It is quite an irony that we know so much about Alzheimer’s disease but very little about the man after which the disease was named – Dr Alois Alzheimer.

Let’s explore a bit the life of this mysterious man and why the disease carries his name.

Alois Alzheimer was born in 1864  in Marktbreit – a small town in Bavaria, Germany. During his childhood, he showed an avid interest in the natural sciences, which made his father decided for him to study medicine. He studied medicine for the majority of his studies at the University of Wuerzburg in Germany. 

During this time at the university, he was a member of a student fraternity [Corps Franconia] which were popular at the time in Germany. These student fraternities provided a great social life but were at the same time infamous for their practical pranks, as well as their carousing and sabre duels without any head protection. 

Alzheimer was very happy in those fraternities as he seemed to have been a highly social person who likes to ‘live a good and full life’. However, his fraternity time led to several university reprimands and even talks about being expelled from the university because of the practical pranks they conducted. The other souvenir from his fraternity days, apart from his reprimands, was a scar on the right side of his face caused by a sabre duel. We can say with certainty that his student life was ‘lively’.

Contrasting with his ‘Bon vivant’ lifestyle, he was also known as a meticulous and hard-working student or to put it in more modern terms: he worked hard and played hard. This attitude shaped during his student life stayed with him for the rest of his life. 

His hard work and meticulousness paid also off for his research dissertation, as part of his medical studies. He conducted his dissertation on the anatomy of the ceruminous glands – the glands producing earwax in our ears – and the dissertation was awarded an award by the university because of his outstanding work. 

The award might have spurned him on to do more research, even though the actual topic of the thesis had little relevance for his future career. But the research dissertation introduced him to the ‘scientific love’ of his life – microscopy.

We need to remind ourselves that microscopy had been not around for long at that time and was considered a cutting-edge technique for medicine in the 19th century. Alzheimer instantly fell in love with microscopy and this love became key for his discovery of Alzheimer’s disease later on.

When he finished his studies, he worked for one year as a private doctor accompanying a wealthy family during their travels through North Africa before he took up his first permanent position as a junior doctor in 1888 at the psychiatric hospital in Frankfurt, Germany.

It was in Frankfurt that Alois Alzheimer had his fateful encounter with the ‘first’ person diagnosed with Alzheimer’s disease – Mrs Auguste Deter. 

Mrs Deter was a 51-year-old housewife when she met Alzheimer for the first time on the 26th November 1901. Her family doctor had referred her to the psychiatric hospital as she had shown some changes to her behaviour and also showed severe memory problems. 

When Alzheimer saw her, he realised that her symptoms were different from other people he had seen before. He decided, therefore, to document carefully their conversations and we can still read today their verbatim exchanges, noted down in Alois Alzheimer’s handwriting. 

During these conversations it emerged that Mrs Deter had severe memory problems, often losing her train of thought in the middle of the sentence and could not remember what she wanted to say or write down. The other telltale signs of Alzheimer’s disease was that she was spatially and temporally disoriented, meaning she was unsure where she was and what date it was. 

Another symptom was that several times during Alzheimer’s interviews with her, she thought she was back in Kassel (a town ~200 km/120 miles north of Frankfurt), where she had grown up as a child. However, Alzheimer knew from her husband that Mrs Deter had lived in Frankfurt for all her adulthood. Alzheimer noticed this symptom, which we now know so well as ‘living in the past’ in people with Alzheimer’s disease.

During the next six months, Alzheimer followed Mrs Deter’s progression during the disease closely, including several interviews, as she remained in the hospital. At that time people with dementia, once admitted to the psychiatric hospitals, never left again. It was the same for Mrs Deter who stayed in the Frankfurt psychiatric hospital until her death.

By the time of Mrs Deter’s death, Alois Alzheimer had moved first to Heidelberg and subsequently to Munich where he worked with one of the greats of early psychiatry – Prof Emil Kraepelin. Kraepelin was a pioneering psychiatrist, describing many of the psychiatric diseases for the first time and establishing their diagnostic criteria for other doctors. He also wrote some of the first textbooks for psychiatry teaching the next generation of doctors the symptoms of psychiatric diseases. Finally, he fostered the research into psychiatric diseases to understand and ultimately treat them better.

Kraepelin’s clinic and hospital were, therefore, the ideal setting for Alzheimer to continue his microscopy work, which he had conducted at Frankfurt and Heidelberg. Importantly, after moving away from Frankfurt, Alzheimer had kept in contact with his colleagues there and asked for regular updates on Mrs Deter. He continued keeping meticulous notes on Mrs Deter, as he remained very interested in her symptoms and disease progression.

On the 9th of April 1906, Alzheimer received a phone call from Frankfurt – an unthinkable (and expensive) occurrence at the time – informing him that Mrs Deter had died the night before at the hospital in Frankfurt. The phone call was another sign of how much importance Alzheimer gave to Mrs Deter and her disease. He asked his colleagues to send him the clinical files of Mrs Deter and to conduct an autopsy to remove her brain and send it to him. His colleagues obliged. 

In today’s context, such a decision seems clearly unethical, as neither Mrs Deter nor her family consented for this to happen. Unfortunately, it was not uncommon at that time for this to occur and it took until after the Second World War when more rigorous ethical procedures were introduced for research.

After receiving Mrs Deter’s clinical notes and brain, he and two colleagues analysed her brain meticulously for the next six months. Again Alzheimer’s meticulousness paid off, as he did not only have his extensive clinical notes and the interviews with her but also conducted detailed studies on her brain. The majority of the brain studies were conducted with the microscope, describing the changes in and around the nerve cells of her brain, which were rigorously documented in text and drawings. We can still see today Alzheimer’s first-hand drawings of the changes in her brain, which are now considered the first evidence of the disease.

After concluding his analysis of the clinical notes and her brain, the stage was set to present the findings to his colleagues and bringing this new disease to their attention. The opportunity for such a presentation came in the form of a meeting of German psychiatrists in Tuebingen, Germany on the 3rd November 1906 – nearly 5 years to the day when Alzheimer met Mrs Deter for the first time. 

Alzheimer’s presentation was scheduled for the afternoon and he had, in typical fashion, meticulously prepared his speaking notes and even prepared some projection slides to show his hand-drawn observations of the changes in her brain. He started his presentation, first describing her clinical presentation and symptoms in detail, before talking about the microscopic changes in her brain.

He described then for the first time the typical brain changes causing Alzheimer’s disease. Namely, the accumulation of two proteins, amyloid and tau, which start clumping together when the disease starts, forming amyloid plaques [balls of amyloid] and tau fibrils [strings of tau]. It is those amyloid plaques and tau fibrils which become toxic to the nerve cells in the brain and cause them to die. The dying brain cells are particularly found in the brain areas important for memory and orientation, hence the typical Alzheimer’s disease symptoms. 

The key discovery of Alzheimer was to link the clinical symptoms with specific changes in the brain. Other clinicians had before Alzheimer described similar cases, including Alzheimer himself who saw a man in 1898 who had similar symptoms as Mrs Deter. It was therefore the recognition of the same symptoms which likely triggered Alzheimer to follow Mrs Deter so closely and document her symptoms so rigorously. The key discovery of Alzheimer was based therefore on his use of microscopy to describe the specific changes in her brain and relate them to her symptoms.

However, Alzheimer of course did not know that the changes he described were caused by amyloid and tau. Instead, he simply described ‘millet seed-sized’ spots in the brain, which we now know are amyloid plaques, as well ‘disintegrated cell fibres’ which we now know are tau fibrils. He also noted that nerve cells in the brain seem to die due to an ‘unknown metabolic substance’, which we now know are amyloid and tau. It took another 70 years after Alzheimer’s description until we knew that it was in fact amyloid and tau which are the cause for Alzheimer’s disease. 

At the end of his presentation, Alzheimer paused, as is custom after scientific presentations, to receive comments or questions from his colleagues. Let’s remember that it took him almost 5 years to follow Mrs Deter disease progression and prepare the scientific findings for his colleagues. He was sure this was a different disease worth for his colleagues to know about and to discuss with him. However, we have clear documentation that Alzheimer’s presentation was only met with silence at the end, as there were no questions and the next speaker was up.

As so often in science, groundbreaking findings are often not recognised when they first come up – even by the experts. Personally, Alzheimer must have felt deflated that all his years of work did not seem of sufficient interest to his colleagues.

It was Kraepelin who came to his rescue, who recognised that Mrs Deter’s case was indeed novel and worthwhile reporting. Kraepelin urged therefore the meeting organisers to include Alzheimer’s case description of Mrs Deter in the conference proceedings. This was an important step, as the conference proceedings were published and widely read by many psychiatrists and they could be therefore informed of this ‘new’ disease.

It is the entry in those conference proceedings – a small text, just shy of 2 pages long – which is now considered to be the foundation stone of Alzheimer’s disease. Had it not been for Kraepelin, who knows when someone else would have made the connection between the symptoms and the brain changes and how it would have been called. Kraepelin is therefore the unsung hero of the birth of Alzheimer’s disease. The other critical contribution Kraepelin made, was to give the disease its name – Alzheimer’s disease.

Kraepelin, at the time of Alzheimer’s presentation, was revising and expanding his teaching books for psychiatric disease and it is in his revision in 1910, in which we find for the first time the reference to ‘Alzheimer’s disease’ [German: “Alzheimerische Krankheit”]. Kraepelin also scientifically published with Alzheimer the findings of 7 other people with Alzheimer’s disease, showing the same symptoms and microscopic changes as Mrs Deter. It was all in place for Alzheimer to become famous for the description of Alzheimer’s disease and reap the rewards for all his years of hard work. But it never happened during his lifetime.

In 1912 Alzheimer took up a new position in Breslau (Wrocław in Poland today) to lead his own psychiatric clinic and laboratory. There are accounts that even during his move there, he did not feel well and over the next few years, his health continuously deteriorated, until he died on 19th December 1915 at the age of 52.

Therefore the other irony in the story of Alois Alzheimer is that he was never known during his lifetime for his discovery of Alzheimer’s disease. None of his obituaries from the time, written by professional colleagues, mention the case of Mrs Deter or Alzheimer’s disease. One can only imagine how astonished Alzheimer would be today to see how his name is in everyone’s mouth when talking about dementia. 

It is a good reminder that we cannot foresee what will be known for when we are gone. That is certainly true for both Alois Alzheimer and Auguste Deter.