Abstract
Existing accounts of the early history of Alzheimer’s disease have focused on Alois Alzheimer’s (1864–1915) publications of two ‘peculiar cases’ of middle-aged patients who showed symptoms associated with senile dementia, and Emil Kraepelin’s (1856–1926) discussion of these and a few other cases under the newly introduced name of ‘Alzheimer’s disease’ in his Textbook of Psychiatry. This article questions the underpinnings of these accounts that rely mainly on publications and describe ‘presenility’ as a defining characteristic of the disease. Drawing on archival research in the Munich psychiatric clinic, in which Alzheimer and Kraepelin practised, this article looks at the use of the category as a diagnostic label in practice. It argues that the first cases only got their exemplary status as key referents of Alzheimer’s disease in later readings of the original publications. In the 1900s, the published cases rather functioned as material to think about the limits of the category of senile dementia. The examination of paper technologies in the Munich psychiatric clinic reveals that the use of the clinical diagnosis of Alzheimer’s disease was not limited to patients of a certain age and did not exclude ‘senile’ cases. Moreover, the archival records reflect that many diagnoses of Alzheimer’s disease were noted in the medical records as suspicions rather than conclusions. Against this background, the article argues that in theory and practice, Alzheimer’s disease was not treated as a well-defined disease entity in the Munich clinic, but as an exploratory category for the clinical and histopathological investigation of varieties of organic brain diseases.
I Introduction
The history of Alzheimer’s disease as a novel psychiatric category of the early 20th century has primarily been written as a history of published ideas. Different readings and contextualisations of the socio-political and epistemological circumstances of the ‘discovery’ of Alzheimer’s disease abound, but almost all historical accounts take Emil Kraepelin’s (1856
As this special issue makes clear, medical categories are negotiated in various arenas, including, but not limited to, textbooks and clinical practice. Kraepelin’s textbook provides both a practical guide for differentiating between mental diseases and a nosology, that is, a clinical theory of diseases. Reading through the manual allows us to recognise the particular vision of clinical psychiatry that Kraepelin promoted. Given that it is based on clinical experience and aims to guide future diagnosis, the textbook also suggests how the described nosological categories should be applied in medical practice. However, how Kraepelin’s categories were actually used in his clinics – if at all – is an empirical question that is often difficult to answer. To address this question, it is necessary to approach a medical category such as ‘Alzheimer’s disease’ not as a category in textbooks or journal articles (i.e. as a nosological category), but as a bedside diagnosis (i.e. as a diagnostic category). To do this, we need to examine other types of sources. Sources such as pre-printed forms for discharge summaries (‘epicritical reports’) or patient admission books (‘books of diagnoses’) document not only the flow of patients in and out of the hospital, but also show how physicians used such paper technologies in the diagnostic process (see also Keuck, 2016). These reconstructions of the use and application of diagnostic labels in a given locality can then be fruitfully compared with the published debates about the medical category in question. 2
This article applies such an approach to the case study of the diagnosis of Alzheimer’s disease in the Royal Psychiatric Clinic of Munich in the period when Alois Alzheimer worked there as both psychiatrist and head of the microscopic laboratory, that is, between 1904 and 1912. All documented patient admissions between 1909, when the clinical diagnosis ‘Alzheimer’ first appeared in the books of diagnoses (Diagnosenbücher), and 1912, are systematically assessed. During this time, the Munich clinic director, Kraepelin, introduced the nosological category of ‘Alzheimersche Krankheit’ in the 8th edition of his influential psychiatric textbook (Alzheimer, 1911; Kraepelin, 1910).
In pursuing this historiographical approach, the article allies itself with a strand of scholarship that has focused on ‘paper technologies’. Under this heading, paper tools and writing practices have been examined as key resources in the production, management, and governance of knowledge in various fields. 3 In the history of medicine, paper technologies have received attention as sources that can open up the processes whereby physicians and psychiatrists gained and organised their diagnostic knowledge by elucidating the politics, materiality, and practices of medical note-taking. 4 Patient files in particular have been used and critically discussed as materials that allow us to reconstruct how diagnostic categories were applied and negotiated in clinical encounters. 5 More generally, clinical archives have provided sources for analysing the past practices and politics of recording, ordering, and managing patient information (see, for example, Engstrom, 2005). Elisabetta Basso and Mireille Delbraccio have recently concluded that the ‘archival turn’ in the history of psychiatry has also promoted a reflexive understanding of archival research as being both research in and on archives (Basso and Delbraccio, 2017).
This article makes use of such a reflexive understanding of archival research when it discusses why the examined sources have been created, and then maintained, throughout more than a century in an active clinic with limited space. It combines these questions about the archive with research in it. With regard to the latter, it assesses the archived books of diagnoses and epicritical reports in order to contribute to a more nuanced picture of how the Munich psychiatrists applied the diagnostic category of Alzheimer’s disease. The assessment of the medical records provides us with new insights into what the Munich psychiatrists considered to be appropriate features that would qualify patients as cases of Alzheimer’s disease. In particular, the article refutes a standard narrative about the early history of Alzheimer’s disease, which assumes that the clinical diagnosis of Alzheimer’s disease was reserved for presenile patients. This was not the case – at least during the years when Alois Alzheimer practised in Kraepelin’s clinic.
Moreover, this case study illustrates the introduction and application of a clinical diagnosis as an exploratory category. The notion of ‘exploratory category’ captures the fact that, in the period under investigation, the diagnosis of Alzheimer’s disease did not settle a case, but marked it as interesting material to be examined further. With respect to the related notion of ‘exploratory experimentation’, Friedrich Steinle has argued that in ‘formative periods’, ‘when the reliability of the extant [conceptual] framework has been shaken, experimental activity must necessarily take on a very different character’ than hypothesis testing (Steinle, 2016: 6). It follows that the meaning of ‘experimentation’ can vary from working in a conceptual framework to working on a conceptual framework (see also, for example, Fleck, 1979). In a similar manner, this article argues that categorising can be conclusive, or exploratory. The use of the category of Alzheimer’s disease in Kraepelin’s clinic around 1910 was much more exploratory than many later readings have implicitly assumed.
The article is structured in the following way: Section II contextualises accounts of the history of the ‘discovery’ of Alzheimer’s disease. It critically addresses the conventional narrative that is based on the purported paradigmatic role of one or two published cases at least with respect to their age of disease onset, but ignores whether a certain age or a diagnosis of senility excluded a clinical diagnosis of Alzheimer’s disease in practice. Section III provides a discussion on the value of archived clinical paperwork as a source for understanding the use of diagnostic categories in a given hospital. This section examines the politics and materiality of various paper technologies that were applied, and still remain, in the Munich psychiatric clinic. The archival records reflect the fact that diagnosing not only served several administrative, clinical, forensic, and scientific purposes, but also that diagnoses were obtained, corrected, and revised through various means at different times within the observed course of a disease. Section IV examines the seven cases that received a clinical diagnosis of Alzheimer’s disease in the Munich clinic between 1909 and 1912. The use of the category in the clinic demonstrates that neither old patients nor ‘senile’ cases were excluded from the classification of Alzheimer’s disease. Discussions over Alzheimer’s disease in publications do not conflict with the way diagnostic categories were used in Kraepelin’s clinic in general, and the clinical diagnosis of Alzheimer’s disease around 1910 in particular. Neither Kraepelin nor Alzheimer provided a general definition of the disease or a discussion of unambiguous paradigmatic cases. The article concludes that, in theory and in practice, Alzheimer’s disease was not treated as a conclusive diagnostic category that denoted a well-defined disease entity (at least not in the Munich clinic), but worked as an exploratory category for labelling interesting cases for further clinical and histopathological research.
II The ‘discovery’ of Alzheimer’s disease
The history of Alzheimer’s disease usually begins with the patient ‘Auguste D’, whose case was recounted by Alois Alzheimer at a conference in 1906. In her early 50s, Auguste D[eter] suffered a ‘peculiar disease’ that did not fit the existing psychiatric categories (published as Alzheimer, 1907). In 1911, Alzheimer described the clinical and histopathological details of a second similar case of a man, Johann F[eigl], who was admitted to the Munich psychiatric clinic in his late 40s (Alzheimer, 1911). Alzheimer used these two cases to discuss the extent to which they challenged the broad category of senile dementia.
Alzheimer’s approach to the classification of these cases exemplified his general understanding of scientific progress in the diagnosis of mental diseases. In his writings, the neuropathologist–psychiatrist presented a reading of pathological anatomy which conceptualised mental diseases as pathological processes (Krankheitsprozesse): he emphasised ‘cortex pathology’ as a means through which to arrive at more fine-grained differentiations between types of processes of brain decay (see Alzheimer, 1904, 1910; see also Keuck, 2017). Moreover, he sought to integrate these post-mortem findings in clinical psychiatry. Arguing that different pathological processes should correspond to (sometimes only slightly) different clinical pictures, he looked for histopathological variations between clinical cases that had hitherto been (falsely) grouped into the same diagnostic category. For instance, in his habilitation thesis he exemplified this approach in refining the differential diagnosis of the umbrella category of progressive paralysis (Alzheimer, 1904). On the basis of his post-mortem examinations of hundreds of deceased patients who had been diagnosed with progressive paralysis, he tried to identify hitherto overlooked, clinically observable differences within living patients that had been lumped into the same working category, thereby closing the circle from bedside to bench and back again (Alzheimer, 1910; see also Gzil, 2007; Keuck, 2017). 6
Fabrice Gzil (2007) has argued that the underlying epistemology of Alois Alzheimer’s work neither permits us to characterise Alzheimer as having ‘discovered’ a formerly unknown disease entity nor as having ‘created’ artificial boundaries between senile dementia and presenile Alzheimer’s disease. Instead, Gzil has proposed an understanding of Alzheimer’s disease as an ‘invention’, arguing that Alzheimer used the presentation of peculiar cases to question the relationship between the age of disease onset, the severity of the clinical course, and the abundance of plaques in the sectioned brain tissues vis-a-vis other, clinically more typical (older age of onset, slower progression) cases of senile dementia. This article follows Gzil’s reading of Alzheimer’s writings to a large extent, but suggests that the concept of an ‘exploratory category’ matches the use of ‘Alzheimer’s disease’ in the clinics and in publications better, because it allows us to understand how the category was employed as a way of knowing and because it is closer to Alois Alzheimer’s epistemology, in which diagnostic differentiations were explored, not invented.
In his 1911 publication, Alzheimer pointed to Emil Kraepelin’s Textbook of Psychiatry as introducing the term ‘Alzheimer’s disease’. Kraepelin discussed under this heading a small group of cases that had shown a severe form of an organic brain disease as evidenced by clinical and histopathological characteristics (Kraepelin, 1910: 624–9). Alzheimer’s disease was one of a handful of diagnostic categories for which Kraepelin included microphotographs, notably from Alois Alzheimer’s laboratory, and descriptions of their histopathology. This marked a change from the first seven editions of his textbook Psychiatrie. Ein Lehrbuch für Studierende und Ärzte, published between 1887 and 1904, in which Kraepelin was sceptical about the practical value of basing psychiatric nosology on post-mortem pathological anatomy (see Engstrom and Kendler, 2015; Engstrom, 2016).
Kraepelin’s nosology was oriented towards the identification and anticipation of the course of a mental disease. His focus on ‘Verlaufsdiagnosen’ allowed him to combine a variety of clinical and scientific parameters, as long as they proved to be suitable for differential diagnosis, and to manage and sort patients according to their assumed prognosis (see Engstrom, 2005; Roelcke, 1999). This aim was realised by his system of registering and ordering diagnoses on paper. This system included the institutionalised recording of all patient admissions in books of diagnoses and the archiving of patient files. Moreover, Kraepelin used a series of personal paper technologies, notably his counting cards, with which he re-ordered diagnoses. His diligent recording allowed for the comparison and re-grouping of cases that guided both the revision of existing categories and the introduction of novel nosological concepts in his textbook (see Engstrom, 2005; Wübben, 2012: 63–160).
This ‘category work’ worked hand-in-hand with the use of diagnostic labels to make possible activities in the political arena as much as in the clinics. Eric Engstrom (2005) has shown how statistics could be compiled to demonstrate overcrowding: demonstrations that would provide the basis for Kraepelin’s appeals for increased funding during his time as director of the psychiatric university clinic in Heidelberg in the 1890s. Furthermore, Kraepelin’s classification of mental diseases could be applied to single out patients who were sent to cheaper asylums due to poor prognosis or incurable illness (see Engstrom, 2005). 7 Kraepelin himself wrote that the ordering of the ‘material of experience that nature provides us with’ 8 should enable the physician to ‘predict the coming’ or the ‘further development’ of an illness. 9 Even without potent therapeutic options at hand, prognostication was supposed to grant clinical psychiatry a privileged position in managing the mentally ill, in receiving public funds for doing so, and in positioning itself as a medical discipline. Kraepelin’s textbook was both a pragmatic tool for organising cooperation between the various instances of institutionalised psychiatry and an idealistic symbol of psychiatry as it strived for solid foundations. The introduction, discussion, and use of the category of Alzheimer’s disease needs to be assessed against the background of this flip-flop image of clinical psychiatry as practice and ideal.
In this light, the debate about whether Kraepelin or Alzheimer (or anyone else) should be praised as the ‘true discoverer’ of the disease seems misplaced. 10 This debate has, however, shaped the standard narrative of the so-called early history of Alzheimer’s disease. For instance, medical anthropologist Margaret Lock (2013), in her rather critical book about recent developments in biomedical research on Alzheimer’s disease, dedicated a chapter on the history of the disease, in which she diligently recapitulated the scholarship on the establishment of Alzheimer’s disease in the 1900s. She concluded that Kraepelin ‘made a cautious but nevertheless clear distinction between conditions he described as presenile and senile dementia’ (Lock, 2013: 35). The section ends with the open question ‘as to why Kraepelin took this position on the basis of what appears to be fragile evidence’ (ibid.).
The research presented in this article questions the underpinnings of this account. German Berrios and Fabrice Gzil have already demonstrated the inadequacy of the underlying assumptions of the ‘discovery’ narrative, stressing that neither Kraepelin nor Alzheimer, nor one of their co-workers or competitors, settled the issue of where the peculiar cases of Auguste D and Johann F belonged (Berrios, 1990; Berrios, undated; Gzil, 2007, 2009). This article adds further evidence that the published cases were not introduced as typical exemplars of Alzheimer’s disease. They were not blueprints for marking a ‘clear distinction’ between nosological categories. Rather, the cases (in the publications, and, as we shall see, in the clinics) functioned as material to think about the limits of the category of ‘senile dementia’, and about clinical and anatomo-pathological possibilities for further differentiating cases of ‘organic brain disease’. In other words, the first published cases only got their exemplary status as key referents of Alzheimer’s disease in later readings of the original publications. 11 This is, in particular, the case for the question of whether Alzheimer’s disease was restricted to young, presenile patients.
Young age (or early onset of the disease) and presenility were, strictly speaking, not synonymous, because the age of a patient was only one aspect of the concept of (pre) senility. Senility might be best understood as a cultural and medical concept that captured varieties of mental insanity associated with old age. 12 With respect to the diagnosis of Alzheimer’s disease in Kraepelin’s clinic, we therefore need to ask two questions: was the clinical diagnosis reserved for patients of a certain age? And, was the diagnosis reserved for patients who were not (yet) considered senile? As we shall see, both questions can be answered negatively: neither a certain age (at least up to 69 years) nor the qualifier ‘senile’ excluded the diagnosis of Alzheimer’s disease. This is not to say that the link between ageing and degenerative processes leading to insanity was not of interest; Kraepelin’s (1910) and Alzheimer’s (1911) publications indicate that it was indeed a crucial question. An examination of how the category of Alzheimer’s disease was applied in the clinic sheds light on the exploratory character of the category at the time of its introduction. This brings us to the sources that can help us reconstruct the clinical use of diagnostic categories: paper technologies in the clinic archive.
III A multiplicity of diagnoses on paper
When reflecting on the importance of medical documents for the history of psychiatric knowledge, we not only need to ask how and why they have been created, but also why old paper work has been kept for more than a century. This entails looking at the conditions of maintenance of these sources (beyond legal requirements that apply to much shorter periods of time) or, in other words, the politics of clinic archives.
The Munich clinic is a case in point. Its former and present directors edited a book on the history of the clinic in celebration of its centennial (Hippius et al., 2005); they collected and displayed historical records of psychiatrists that worked in Munich; and they honoured Emil Kraepelin and Alois Alzheimer with busts that are prominently placed in the building. The vice-director of the clinic, Professor Norbert Müller, stressed the fact that it was indeed only due to their historical interest that all medical records were kept in the cellar of the clinic, in chronological order, side-by-side with the current files, despite massive space problems. 13 Patient files in this archive date back to the 1930s; it is believed that the earlier ones were lost in World War II, when the clinic was temporarily relocated from Munich to the countryside.
What remains in the archive from Kraepelin’s time are the Diagnosenbücher, that is, books of diagnoses that list every patient admission since 1904, and the complete series of Epikrisenblätter, that is, medical reports that provide one-page summaries for each patient. These documents provide few insights into how patients interacted in the diagnostic process or reacted to diagnostic ascriptions, yet they are very interesting sources for studying how diagnostic categories were registered, altered, and revised in the clinic. The books of diagnoses and compilations of reports display features that are somewhat similar to those described by Ann Blair (2010) for ‘reference books’: they ‘involve four crucial operations: storing, sorting, selecting, and summarizing’; (Blair, 2010: 10) they are used in turn by different people, many of whom remain ‘invisible’ (e.g. the administrative hospital staff); and when used in psychiatric publications, they are usually not referenced as sources.
Diagnosenbücher and Epikrisenblätter form part of a longer series of paper technologies that include patient files, autopsy books, and private paper technologies such as Kraepelin’s counting cards. These documents reveal crucial aspects of the process of capturing diagnoses on paper such as the provisional nature of an uncertain diagnosis which conflicted at times with the permanence of ink on paper. Moreover, the multiplicity of rubrics for recording diagnoses on different documents allows us to trace how, if at all, corrections of a diagnosis were reported in the various elements of the chain of paper technologies. In this sense, the materiality of paper technologies tells us something about the use and purpose of diagnosis in the daily activities of the Munich clinic. 14
The casebound books of diagnoses of the 1900s and 1910s were produced by the ‘Special-Geschäft für Papier- & Comptoir-Bedarf C. F. Zeller’ in Munich, a stationery store that was founded in 1806 and that still exists under the name ‘C.F. Zeller’. In the 1900s and 1910s, the books were organised in the following way: every double page had 9 pre-printed column headings and 25 pre-printed rows that were filled in chronological order. The columns encompassed, first, a chronological running number, then the full name and age of the patient as well as the date of admission. These first four entries were usually written in the same, tidy handwriting. The next column, entitled ‘clinical diagnosis’, was often filled in by a different person, and it are these entries that were repeatedly revised: they show corrections as well as additional differently coloured signs and symbols at the margins of the rubric that seem to have been added later, for instance to compile statistics. We can infer that the entries for ‘clinical diagnosis’ were added at a later time than the running number and were reworked even later and often by different persons. However, we cannot know exactly when these entries were written or altered.
The second page of the book’s double page included two columns for the day and the place of the patient’s discharge of the Munich psychiatric clinic. Two further columns, entitled ‘remarks about diagnosis’ and ‘remarks for katamnesis’, were very rarely filled in. Such remarks were mostly left to the ‘epicritical reports’. 15
Epicritical reports were written on thin sheets of uncoloured (for men) or pink (for women) paper. At the end of each year they were compiled for archiving. These sheets included, again, pre-printed rubrics that were identical for women and men. The upper half of the sheet included the diagnosis, misdiagnoses, the name of the patient, her place of birth, age or date of birth, Heimat, her last residence, the address of relatives, her occupation, marital status, and the number of living and dead children, followed by a table that offered up to 12 entries for dates of admission, dates of discharge, and places of discharge. Below the table were rubrics for inheritance (Erblichkeit), and for other causes (Andere Ursachen), where usually the amount of regular alcohol consumption was noted. The lower half of the report encompassed a comparatively large blank space for summarising the previous history, the medical findings on admission, and the course of the disease (Vorgeschichte, Befund bei der Aufnahme und Verlauf). The bottom of the sheet provided an opportunity for entering additional remarks (e.g. for cytological and serological findings that were regularly screened for, especially after the introduction of the Wasserman reaction to test for serological indications of syphilis in 1905), for an anatomical diagnosis, and a forensic assessment. Some of the sheets were filled in with black ink, others with a typewriter, or a combination of both (e.g. first half in ink, second half typewritten). For easy cross-referencing, the last name of the patient was written in the upper right-hand corner, and a reference number linking the report to the books of diagnoses (and most possibly also to the patient file) appeared centred above the header. This reference number was made from the running number that was allocated to all patients in chronological order of their admission, and the year of the admission: 902/07 is the reference number of Alzheimer’s ‘second case’ Johann F, who was the 902nd man admitted to the clinic in the year 1907.
It is remarkable that the Diagnosenbücher and Epikrisenblätter offered, together, several rubrics for diagnoses: clinical diagnosis (‘Klinische Diagnose’), misdiagnoses (‘Fehldiagnosen’), anatomical diagnosis (‘Anatomische Diagnose’), and forensic assessment (‘Forensisch’). Although we do not know for sure when in the diagnostic process – a process that could well transcend a patient’s lifetime – a ‘clinical diagnosis’ was scribbled into the book of diagnoses, the multiplicity of rubrics used in the various paper technologies suggests some chronological and functional order: the prefix ‘clinical’ indicates that diagnoses listed in the books of diagnoses were supposed to reflect clinicians’ rather than anatomists’ conclusions (or at least suspicions), and that they framed further ‘clinical’ action, including the referral of chronically ill patients into cheaper asylums. 16
It is certainly possible that pre-printed sheets were not only used for the Epikrise, but also to structure the admission procedure so that all relevant patient-related information was recorded, and that the most important diagnostic findings were efficiently summarised. Cornelia Vismann wrote about the file that its format ‘indirectly contains a command’ (Vismann, 2008: 9). Following this media-theoretic thread, one could assume that the pre-printed rubrics not only organised patient information, but also structured the ways in which diagnostic findings were obtained. Yet, as already indicated, not every ‘command’ of the pre-printed forms was followed; some rubrics were regularly left blank, some diagnoses were revised in light of new facts, while others remained unchanged. The conclusive nature of the epicritical report was never fully realised, since novel conclusions were often not transferred to the report, but recorded elsewhere: in, for example, autopsy books, scientific articles and psychiatric textbooks that featured case histories, as well as in Habilitation theses, which reassessed groups of cases in order to ground new diagnostic conclusions and promote new disease concepts. For instance, neither of the two cases discussed by Alois Alzheimer in his 1911 article ever received a diagnosis of Alzheimer’s disease. What is more, the diagnoses that were first given to them in the reports were never altered following this publication. The epicritical report of Auguste D does not include an entry for diagnosis (only her brain was ‘admitted’ to the Munich psychiatric clinic after she died in Frankfurt, see Engstrom, 2007), but the summary closes with the finding of ‘brain atrophy’ (Hirnatrophie). Likewise, Johann F’s diagnosis reads ‘Organic brain disorder (Arteriosclerosis?)’, (Organische Hirnerkrankung (Arteriosklerose?)). Although his brain was sectioned post mortem, and the autopsy book even listed the diagnosis, ‘Alzheimer’s disease’, the rubric for anatomical diagnosis on the epicritical report was left blank (see Graeber et al., 1997).
Retrospective corrections and additions on the one hand, and gaps and incoherencies on the other, reflect two sides of the same coin, namely of diagnoses-at-work. Finding the aetiologically and prognostically correct diagnosis for a given case and sorting groups of cases into diagnostic categories were not only the goal of Kraepelin’s textbook but also the organising principle of his clinic in Munich (as well as in Heidelberg, as Eric Engstrom (2005) has shown). Yet, the provisional nature of many clinical diagnoses resulted in an open-ended process of diagnostic revision in which epicritical reports were reused or reworked even if previous conclusions remained untouched on other papers: in Alzheimer’s 1911 publication, for instance, the description of the medical findings and clinical course of the disease of Johann F was taken almost word by word from the summary in the epicritical report. 17
Books of diagnoses and the accompanying epicritical reports provide an interesting window onto the general question of what it meant to apply diagnostic categories, and to the particular issue of how the diagnosis of Alzheimer’s disease was actually used in Kraepelin’s clinic. As the incoherencies between forms of paper work in the clinic show, the attribution of a (clinical) diagnosis of Alzheimer’s disease need not have implied that this diagnostic conclusion would not be revised later. Yet, what these initial clinical diagnoses do make visible is which patients qualified as probable cases of Alzheimer’s disease. They need not be seen as ‘paradigmatic cases’, whatever that might have meant in the 1900s, but these cases provide some empirical basis against which we can re-assess existing accounts of the early history of Alzheimer’s disease, and their assumption that the defining clinical differentiation between Alzheimer’s disease and senile dementia was the age of onset of the mental illness.
IV Seven clinical diagnoses of Alzheimer’s disease
Between 1909 and 1912 (Alois Alzheimer’s last year in Munich) seven cases of Alzheimer’s disease were recorded in the books of diagnoses: four women and three men, aged between 42 and 69 years (see Table 1). In this period of time, the books chronicle 7792 admissions (about 1160 men and 760 women per year).
Cases that were assigned a clinical diagnosis of Alzheimer’s disease in the Munich books of diagnoses, 1909–1912. The reference number indicates the chronological admission number (e.g. 750), and the year of admission (e.g. 1912, abbreviated as 12).
1 ‘Eigenartige Erkrankg (sic!) Alzheimer, Organischer Fall, Unklar’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Diagnosenbuch Frauen 625/09;
‘Morbus Alzheimeri’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Diagnosenbuch Frauen 54/11;
‘Unklar, anat. eigenartige Erkrankung (Alzheimer)’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Diagnosenbuch Männer 255/11;
‘Senile Alzheimersche Krkt’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Diagnosenbuch Frauen 105/12;
‘Alzheimer’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Diagnosenbuch Männer 241/12;
‘Alzheimer’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Diagnosenbuch Männer 675/12;
‘Senil. beginnende Alzheimer’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Diagnosenbuch Frauen 750/12 (all translations: L.K.).
2 ‘Eigenartiger Krankheitsprozess (Alzheimer?)’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Epikrisenblätter Frauen 625/09;
‘Morbus Alzheimeri’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Epikrisenblätter Frauen 54/11;
‘Alzheimersche Krankheit? (in Bleistift hinzugefügt:) Unklar eiganart. Krank.’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Epikrisenblätter Männer 255/11;
‘Alzheimersche Krankheit’ (in Bleistift), Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Epikrisenblätter Frauen 105/12;
‘Alzheimersche Krankheit’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Epikrisenblätter Männer 241/12;
‘Alzheimersche Krankheit’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Epikrisenblätter Männer 675/12;
‘beginnende Alzheimersche Krankheit? (Fragezeichen durchgestrichen)’, Krankenaktenarchiv der Psychiatrischen Klinik der Ludwig-Maximilians-Universität München, Epikrisenblätter Frauen 750/12 (all translations: L.K.).
The first entry mentioning Alzheimer’s disease can be found in the women’s book of diagnoses from 1909, that is one year before the publication of the 8th edition of Kraepelin’s textbook. Identified with the running number 625 of 1909, a woman aged 68 was admitted to the clinic on 23 October. She was relocated to the neighbouring asylum in Eglfing on 4 November the same year. The clinical diagnosis reads: Eigenartige Erkrankg (sic!) Alzheimer, Organischer Fall, Unklar (‘peculiar ailment Alzheimer, organic case, unclear’). The corresponding epicritical report gives the diagnosis: Eigenartiger Krankheitsprozess (Alzheimer?) (‘peculiar disease process (Alzheimer?)’). 18 This term echoes the expression Alois Alzheimer used to describe the ‘peculiar’ illness of Auguste D in 1906. The notion of an ‘organic case’, then again, worked as an umbrella category for different organic brain diseases, the sub-forms of which were yet to be properly delineated.
The epicritical report from case f 625/09 indicates that the patient died in Eglfing on 9 February 1910. The summary of the case history and disease course portrays a very unsettled woman who had been transferred from another hospital. For three years, the report noted, she had memory problems, had lost her language abilities, did not behave in a socially adequate manner (she ripped off her clothes), and did not know how to use everyday items (she used a toothbrush as a hairbrush). It was also reported that her pupils did not react to light, and that she had hard peripheral arteries.
In terms of the manifestation, severity, and progression of personality changes, restlessness, language and memory problems, and the inability to behave adequately and perform everyday activities, this report reflects the observations and the conclusions recorded in the published cases. In the present case, Alzheimer’s disease was explicitly mentioned as a guess. In the book of diagnoses, Alzheimer stands side-by-side with the vague notion of an organic disease, and the blunt admission of ignorance: unclear. In another case, a question mark after ‘beginning Alzheimer’s disease’ is crossed out on the epicritical report, presumably after the anatomical section. 19 This shows that the diagnosis was used – often along with question marks or other signs of doubt – to mark an interesting case for histopathological verification: clinically suspicious cases were tracked, even after death, returning to Alzheimer’s laboratory for post-mortem examinations. The clinical diagnosis was explicitly associated with diagnostic uncertainty: marked cases were, indeed, peculiar; they needed to be re-assessed, clinically and histopathologically, not only in order to ascertain their individual diagnosis, but also to address the whole diagnostic category to which they were provisionally assigned. The traces of multiple re-readings and revisions of the diagnoses consort with Alzheimer’s thoughts on how histopathological differentiations can correct, inform, and guide the clinical gaze in an iterative transfer process of material and insights between bedside and bench. Yet, the use of the category of Alzheimer’s disease cannot be reduced to the prospective assignment of cases for anatomical examination alone.
Though a diagnosis of Alzheimer’s disease was a very rare event, even in the clinic in which Alzheimer and Kraepelin practised, it is remarkable that it was used at all as a clinical diagnosis, and was not reserved only for retrospective post-mortem diagnosis when the histopathological particularities of the cases could be scrutinised. In one of the registered cases (f 750/12), is added in blue ink (all the other entries are in black ink or typed) under the rubric anatomical diagnosis: ‘Keine Drusen, keine Fibrillenwucherung’; this means that the microscopic analysis of the women’s brain cortex did not yield indications of either of the two potential histopathological characteristics which Alzheimer (1911) and Kraepelin (1910) discussed with respect to Alzheimer’s disease in their publications. These corrections and additions at different moments in time, before and after the patient’s death, underline the exploratory character of the diagnostic category with respect to both its clinical and histopathological dimensions. In another case (m 241/12), the epicritical report does not even state when the patient died, save that his brain was examined after his death. Notwithstanding potentially conflicting or even non-existent anatomical evidence, the epicritical reports repeat in both cases the diagnosis of Alzheimer’s disease. This shows not only that the diagnosis of Alzheimer’s disease was used to mark interesting cases that should be kept in sight for ultimate anatomical examination, but also that the category was explored as a diagnostic label for living patients, and that it was assigned some clinical significance.
So what were the symptoms and characteristics that defined the clinical use of ‘Alzheimersche Krankheit’ and related notions? In all the cases in our sample, the epicritical reports give the impression of a severe, progressive mental degradation accompanied by disorientation and difficulties with articulation, writing, and recognising family members, as well as paranoid fears, and a mixture of obtuse and outrageous behaviour, often combined with aberrant reflex reactions. What is particularly noticeable with respect to the existing accounts of the early history of Alzheimer’s disease is that only two out of the seven patients were in their 40s or 50s. Furthermore, the concepts of senility and Alzheimer’s disease did not exclude each other. Indeed, the adjective ‘senile’ was, in two of the seven cases (f 105/12, f 750/12), explicitly added to the clinical diagnosis.
It can therefore be concluded that in Alzheimer’s and Kraepelin’s time, and in the clinic where they practised, cases that received a clinical diagnosis of Alzheimer’s disease were not primarily characterised by an early age of onset. The determining features of this group of cases were rather the type, severity, and tempo of the clinically discernible symptoms of what was considered a process of degradation in the brain cortex. Age, gender, social status, and lifestyles (e.g. consumption of alcohol) were recorded, but they were not used to exclude certain groups of people (e.g. patients older than 60 or 65 years) from receiving a diagnosis of Alzheimer’s disease. Rather, the underlying assumption seemed to be that this organic brain disease could affect people that otherwise differed in many respects.
With this in mind, we can re-read Kraepelin’s presentation of Alzheimer’s disease in his textbook. The entry on this category consisted of five pages within the last part of his 101-page chapter on ‘Senile and presenile dementia’ (Das senile und präsenile Irresein). Notably, the section of the chapter discussing Alzheimer’s disease was not the one on presenile dementia, but on senile dementia (Altersblödsinn). Kraepelin’s presentation included three microphotographs of sections of the brain cortex and three illustrations of ‘characteristic’ microscopic fibrils in the sectioned brain, all of which had been provided by Alzheimer. As usual in his textbook, Kraepelin included detailed descriptions of patients’ behaviour in the clinic in order to characterise the natural history of the disease, illustrating typical symptoms that appeared over the course of the illness. He began his description by an acknowledgement of the ‘describer’ of the category. Alzheimer described a peculiar group of cases with very severe cellular changes. It is the slow development of an incredibly severe lingering mental illness with the blurred symptoms of an organic brain disease.
20
(Kraepelin, 1910: 624, translation L.K.) While the anatomical finding would suggest that we are dealing with a particularly severe form of senile dementia, this is somewhat contradicted by the fact that the disease sometimes starts as early as the late 40s. In such cases one would at least have to assume a ‘senium praecox’ if not perhaps a more or less age-independent peculiar disease process. (Kraepelin, 1910: 627 f., emphasis added, translation L.K.)
21
V Conclusion
The argument of this article is that the diagnosis of Alzheimer’s disease was used as an exploratory category in Kraepelin’s psychiatric clinic around 1910. Instead of engaging with the question of why Kraepelin ‘discovered’ or introduced a novel disease category with his description of Alzheimer’s disease in the 8th edition of his textbook, this article shows how the category was applied in the daily work of the Munich university clinic in order to connect observations made at the bedside and at the bench (and vice versa). The archival material kept in the Munich clinic demonstrates that the label of Alzheimer’s disease was tentatively applied to patients, that it was used along with indications of doubts and uncertainties (question marks and notes of ‘unclear’), and that it reflected a provisional rather than a final judgement.
Clinical records also demonstrate that an early age of onset was not considered a necessary condition for a clinical diagnosis of Alzheimer’s disease. Rather the age-independence of this severe form of dementia begged for an explanation. Kraepelin offered two hypotheses for the occurrence of the disease in youngish people: either biological ageing, the senium, started too early in these cases; or the disease process that produced the symptoms of senile dementia was independent from the question of senility all together. It should be noted that neither option excluded the possibility that old or senile people could be affected by Alzheimer’s disease. In fact, the way the category was used in the clinic proves that it was not reserved for presenile cases. This account thus questions the ‘paradigmatic importance’ of Alzheimer’s two published cases of a middle-aged woman and man. If the presenility of their illnesses had been seen as a defining feature of Alzheimer’s disease, this would be incompatible with the application of the diagnosis in older patients, that is, in the majority of cases that actually received this diagnosis during Alzheimer’s stay at the Munich clinic (when he wrote his papers).
In conclusion, for contemporaries, the introduction of Alzheimer’s disease raised more questions than it answered. For us, however, the problem is less why Kraepelin described Alzheimer’s disease as a distinct nosological entity ‘on the basis of what appears to be fragile evidence’. The archival material suggests that Alzheimer’s disease was not the only category used in an exploratory manner, but that this category reflected the general vagueness of many of Kraepelin’s categories. 23 In principle, and often also in practice, the (re-)assignment of cases to diagnostic categories was an open-ended process. The paper technologies examined in this article show that the diligent recording of clinical observations was a common practice in Munich, and not per se an indication of a particularly interesting case as Alzheimer’s biographers mused (see Maurer and Maurer, 2003).
More comparative research on the use of diverse categories will be needed to elucidate the ways in which diagnostic labels were applied, and how clinicians negotiated their uncertainty in different times and places (for another case study that follows this path, see Henckes and Rzesnitzek, in this volume). In general, the multiplicity of rubrics for, and the co-existence of several diagnoses in records point to the intricate relationship between case and category in clinical work as well as the ways in which psychiatrists constantly probed the usefulness and scope of their categories. In the case of Alzheimer’s disease in Kraepelin’s clinic around 1910, this included positioning post-mortem examination as a relevant diagnostic strategy, which could, ideally if not always practically, be used to verify an uncertain clinical diagnosis (see also Alzheimer, 1910; Keuck, 2017). Future research might comparatively analyse the use of the category of Alzheimer’s disease in other clinics (e.g. those of Alzheimer and Kraepelin’s competitors) and/or in other time periods – provided that the medical records have been kept.
For instance, a diachronic comparison could take the work of another Munich-based psychiatrist and neuropathologist, Ernst Grünthal (1894–1972), as its point of departure. In 1925, Grünthal handed in his habilitation thesis, in which he discussed 20 published cases of Alzheimer’s disease, and systematically reassessed 14 cases of Alzheimer’s disease that had been diagnosed – according to Grünthal (1926: 129) mostly by Kraepelin himself – and dissected in Munich between 1913 and 1925 (Grünthal, 1926). The thesis addressed once again the main questions raised by Alzheimer: how did the diagnosis relate to senile dementia with respect to the abundance of plaques in the sectioned brain tissues, the clinical course of the disease, and the age of the patient at the time of the diagnosis, or at the time of onset (Grünthal noted that these times often differ)? Although Grünthal also did not reach any firm conclusions, he suggested that Alzheimer’s disease could be characterised as a discrete disease entity and he identified ‘certain cases’ (sichere Fälle; ibid: 157), and ‘misdiagnoses’ (ibid.). Archival research on the diagnostic records from the 1920s could help answer the question of whether this indicated a transition from the use of Alzheimer’s disease as an exploratory category to its use as a means to conclusively settle a medical issue.
Footnotes
Funding
The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by ‘The Branco Weiss Fellowship - Society in Science’, administered by ETH Zürich.
Notes
I would like to thank the Klinik und Poliklinik für Psychiatrie und Psychotherapie am Universitätsklinikum München, and especially Professor Norbert Müller and archivist Christian König, for meeting me and providing me access to the clinic archive. Many thanks go also to two anonymous reviewers, to the editors of this special issue, and to audiences at Drexel University in Philadelphia, at the Institute for the History of Medicine in Berlin, and to my colleagues at the Chair for the History of Science at Humboldt-Universität zu Berlin for many helpful questions and remarks on previous versions of this article. Special thanks go to the members of my junior research group, Alfred Freeborn and Christof Sendhardt.
