How does literature question dementia as a category of difference? Monika Leipelt-Tsai explores narratives about dementing diseases in contemporary German-Language literary texts and argues that dementia narratives can disrupt the current order of knowledge and contribute to a better understanding of individuals with dementia.
Since the turn of the last millennium, more and more narratives concerning dementing diseases have been released in German-language literary texts. They often belong to a new form of domestic novel that deals with personal and social problems concerning the elderly with dementing diseases. They can be called “dementia novel” (Leipelt-Tsai 2021: 16). This new subgenre speaks of the disintegration of memory and of personal bonds.
The autobiographical book Dementia: Farewell to My Father (Demenz. Abschied von meinem Vater, 2010) by Tilman Jens and its stylistic counterpart The Old King in His Exile (Der alte König in seinem Exil, 2011) by Arno Geiger can be considered major novels in this regard. This can be proven by the fact that it was reprinted in 2014 by the German Federal Agency for Civic Education. Both focus in different ways on the relationship between a son and his elderly father and their dealing with the father’s senile dementia. While the first novel showcases theatrically a father’s weaknesses, the second romanticises them by framing them in a positive Romanticist fashion and employing fragmentation and motifs such as wandering, the night, the “mad” in dark Romanticism. Furthermore, Roswitha Quadflieg explores this prominent topic from the perspective of a daughter on her elderly mother who suffers from dementia in her 2014 novel Nine Month: About the Dying of My Mother (Neun Monate. Über das Sterben meiner Mutter). She tells about her mother’s final identity transformation and death. Apparently, these authors mentioned already have knowledge of the clinical picture of dementing diseases.
Dementia in the German-language context
Where does this social knowledge about dementing diseases come from? To answer this, my monograph Poetry of Dementia (Poetik der Demenz) firstly follows diverse changes in the German term “Demenz” (dementia) in historical and contemporary medical reference works and general language reference works. I describe the historical transformation of these discourses with Michel Foucault’s analytical approach. Back in the 18th century, dementia was classified as a form of madness and treated in asylums. Following Foucault (Madness and Civilization), medical knowledge about dementia can be considered as a narrative, and he casts doubt on any central opposition between normal(ised) and ill people.
From Medieval times to today, the Latin term “dementia” carries a great variety of meaning, including “extravagance” and “heresy” (Leipelt-Tsai 2021: 60). People with dementing diseases have been subjected to social exclusion and death. Especially in the times of the National Socialism, the danger of annihilation made the topic a taboo in the German speaking countries. The construction of new clinical pictures in the medical discourse generated the German noun “Demenz,” which entered everyday language in the 1950s. From the late 1970s, dementing diseases were no longer a taboo and have been slowly accepted by the public. This process led to increased empathy and changed the socio-ethical framework for the apprehension of dementia. Currently, literary narrations and reports about dementing diseases enhance the discussions about them in society.
Nowadays, medical discourse understands dementia as a syndrome due to a “disease of the brain – usually of a chronic or progressive nature – in which there is disturbance of multiple higher cortical functions,” including problems with memory, orientation, language and judgment (WHO 2018). In an acute state of confusion, freedom-restricting measures (such as immobilisation of the ill) could be initiated by the medical staff to prevent accidents. Still, the evaluation of these cases is highly problematic. Classifying a person as having a dementing disease through the medical discourse also indicates a form of “gendering.” Due to this classification, a subject is no longer seen as an individual but as a clinical picture, and certain rights are relieved (Leipelt-Tsai 2022: 44). In times of the coronavirus pandemic, there emerged discussions about whether the safety of sick and elderly people should be given top priority, or whether the economy should be protected (for intergenerational justice, so that the lives of people in work would be made easier).
The importance of verbal communication
How do we actually know of a dementing disease? The cause of Alzheimer’s, for instance, is poorly understood, and this disease can only be scientifically verified after a patient’s death. Therefore, the precondition of a medical diagnosis depends on the reading and interpretation of tests (such as the clock test for Alzheimer’s) and imaging methods, and on the interpretation of the patient’s verbally reported symptoms. Anne Hunsaker Hawkins and Marilyn Chandler McEntyre acknowledged in their introduction to Teaching Literature and Medicine “that ‘medical practice is not, strictly speaking, a science’ and that it is deeply interpretative” (Diane Price Herndl 2005: 595). This formulation refers to the fact that communication via language is an important part of any medical diagnosis. The elderly with major sensory problems, such as being hard of hearing or eye disorders, are often mistaken by outsiders for having dementia. This prominent problem of being identified as having dementia often leads to being ignored.
The functioning, or non-functioning of verbal communication is essential for the assessment of any disease. Literary studies analyse language and depend on interpretation as well. What can contemporary literary texts tell us about the problems surrounding dementia? In the past few years, I have been investigating interesting forms of dementia narratives which touch on, or belong to, the German language discourse. Written by authors from Germany, France, the Netherlands, Switzerland and Austria, these texts take diverse genres, including novel, short story and thriller. I examined them by asking questions such as “What writing strategies do the authors use to bring up the topic of dementia?”. I find that the assumption that the language of the ill is meaningful distinguishes some dementia narratives from others.
The Old King in His Exile (Der alte König in seinem Exil, 2011) by Arno Geiger is considered a major literary work for depicting dementia. His text, with its new emphasis on feelings of both the father with dementia and his son, undermines the stereotype that links dementia with loss. When his father’s ability to think and to remember gradually declines, Geiger depicts how his relationship with his father progresses, instead of disintegrates:
“There’s something between the two of us that has led me to open myself more to the world. Which is, of course, the opposite of what people normally say that Alzheimer’s does – that it cuts connections. Sometimes it creates them.” (Geiger: 177-178)
The narrator also tries to imagine the impact of dementia on the individual’s perception:
“I imagine dementia’s intermediate phase, the phase in which my father is in, more or less like this: you are wrenched out of your sleep, you don’t know where you are, everything whirls around you – countries, years, people. You try to get your bearings, but you can’t. Everything continues to spin – […] and this condition doesn’t change for the rest of the day.” (Geiger 2017: 9)
This passage points to the author’s attempt to control something that cannot be controlled. At the beginning, Geiger turns to the knowledge of the medical discourse (“intermediate phase”) to frame his empathic observation. The father’s behaviour and words have to be interpreted, which leads to an uncertain kind of knowledge, because the father’s change of being unable to think clearly is not communicable. Geiger describes the father’s worsening capability to capture his situation. The father is cited as answering to a question about his wellbeing: “Well, actually, I’m fine, but ‘fine’ in quote marks, because I’m in no position to judge” (17). The father’s words prove that he is unable to assess his health condition. However, he paradoxically recognises his limited ability to judge. Indeed, it remains a mystery how anyone knows of his own dementia at all when memory loss has already set in.
In order to include the isolated, “exiled” father into his life, Geiger constructs the forgotten from the signs that remain behind. When the father says “No miracles happen, but signs” (which is a twist of an idiomatic phrase from the Lutheran Bible), his language is not seen as meaningless but poetical by the author. With his almost philosophical aphorisms, the father produces a new kind of wisdom and helps the narrator to tell his story creatively. In this way, the hierarchical position of the narrator becomes unstable. Therefore, if writing poetry presumably produces a certain form of wisdom, dementia can be assumed as a source of wisdom too. With the novel’s romanticised transformation of the father, Geiger shows poetic apprehension of the socially excluded ill, i.e. the “Other-as-diseased” (Leipelt-Tsai 2021: 11), and of the unknown. Geiger narrates less realistically than magically and ideally in order to free the readers’ thinking of the conventional limits of reason.
Inclusion via dementia narrations
Since the coronavirus pandemic, we are forced to think about the possible impact of important health threats in our daily life. This challenges us as individuals and as a community. Language and interpretation are the base of medical diagnosis. Conventionally, our society uses the medical discourse to shape our perception and thinking of a person with dementia. Now, literature has started questioning this illness as a category of difference.
I argue that literary narratives of dementia lie on conveying the unspeakable. The confusing loss of thinking capabilities is difficult to put into words by the ill. Contemporary writers such as Geiger integrate medical knowledge into the literary discourse. Furthermore, they reframe dementia as a living experience and highlight the ambivalence of living with the illness. Therefore, dementia narratives can disrupt the order and hierarchies of knowledge in current times. This produces a new way of conceptualising dementia and contributes to a better understanding of individuals with dementia.
Dementia narratives illustrate the way in which language and medical-ethical issues are intertwined: the differences and disruptions in the formulation of illness have a significant impact on who is or is not protected in their basic rights at historical times and today. They generate questions that are fundamental to communication about older people in case of memory impairment. Dementia narratives concern all of us, sooner or later, as we will all face ageing someday. They address the uncertainty of our knowledge about the illness and thus lead to the crucial question of how we want to live in the future.
Foucault, Michel. (1988). Madness and Civilization. A history of insanity in the age of reason. New York: Vintage Books.
Foucault, Michel. (1994). The Birth of the Clinic. An Archaeology of Medical Perception. New York: Vintage Books.
Jens, Tilman. (2010). Demenz. Abschied von meinem Vater. München: Goldmann.
Geiger, Arno. (2017). The Old King in His Exile. Translated by Stefan Tobler. New York: Restless Books.
“Key terms and definitions in mental health.” (2018). WHO Regional Office for Europe. 13 August. Available from: http:// www.euro.who.int/en/health-topics/noncommunicable-diseases/mental-health/data-and-resources/key-terms-and-definitions-in-mental-health#dementia.
Leipelt-Tsai, Monika. (2021). Poetik der Demenz – Gedächtnis, Gender und Genre in Demenz-Erzählungen der Gegenwart. Berlin: Peter Lang.
Leipelt-Tsai, Monika. (2022). “A problem of judging. The question of human rights in J. Bernlef’s novel ‘Out of mind.’” In “Memory, Pandemic, and Transculturality,” edited by Gallous Atabongwoung. Special issue, Interface – Journal of European Languages and Literatures, 18: 21-49.
Price Herndl, Diane. (2005). Disease versus Disability: The Medical Humanities and Disability Studies. PMLA 120 (2): 593-598.
Quadflieg, Roswitha. (2014). Neun Monate. Über das Sterben meiner Mutter. Berlin: Aufbau.
About the author
Monika Leipelt-Tsai is a Full Professor at the National Chengchi University, Taipei. In 2007, she received her Doctoral degree from the University of Hamburg, Germany, with a dissertation about “Aggression in lyrical Poetry.” Her recent monograph, Poetry of Dementia – Memory, Gender and Genre in contemporary Dementia Narrations (in German language, all chapters with English abstracts), explores the new link between literary texts and the medical discourse, based on a wide variety of literary dementia narrations. See more about her research on her webpage https://monikaleipelttsai.wordpress.com/.