My second monograph, The Diseased Brain and the Failing Mind. Dementia in Science, Medicine and Literature of the Long Twentieth Century (Bloomsbury, 2020), charts changing cultural understandings of dementia and specifically Alzheimer’s disease in scientific and literary texts across the twentieth century. It tries to understand to what extent the current cultural dementia narrative (a narrative of loss, decline, dependence and passivity) is grounded in historical scientific and medical language related to brain diseases, beginning with its origins in the nineteenth century, when the condition was first described as an organic disease, to the present day, when it is viewed as a disorder of cognition. Following changing scientific understandings of dementia, the book also demonstrates how cultural expressions of the experience and dementia have fed back into the way medical institutions have treated dementia patients. Thanks to the Wellcome Trust it is available open access.
In comparison to my first book, The Diseased Brain and the Failing Mind focuses more on the historical and cultural context in which scientific research is undertaken. It is much more invested in the idea, as I explore in the introduction to this book, that scientific work is not only a discipline of knowledge acquisition, but also a form of culture. The research for this book is based on four different kinds of text: fiction (including film), caregiver accounts, patient life-writing, and scientific and medical texts as well as their popular echoes in mass media reports and generally accessible scientific book publications.
Among the literary texts and films discussed in my book are:
- Lisa Appignanesi, Losing the Dead
- Paul Bailey, At The Jerusalem
- J. Bernlef, Out of Mind
- Alessandro Borio, La guardiana di Ulisse
- Christine Bryden, Who Will I Be When I Die?
- Eleanor Cooney, Death in Slow Motion
- Michael Dibdin, The Dying of the Light
- Jonathan Franzen, The Corrections
- John Galsworthy, The Forsyte Saga
- Lisa Genova, Still Alice
- Toni Harrison, Black Daisies for the Bride
- Joel Havemann, A Life Shaken
- Nora Hoult, There Were No Windows
- Cécile Huguenin, Alzheimer mon amour
- Nancy Mairs, Waist-High in the World
- Wendy Mitchell, Somebody I Used to Know
- Margarita Retuerto Buades, Mi vida junto a un enfermo de Alzheimer
- Til Schweiger, Honig im Kopf
- Matthew Thomas, We Are Not Ourselves
- Michelle Wildgen, You’re Not You
- Yaron Zilberman, A Late Quartet
From the back of the book:
“Martina Zimmermann’s The Diseased Brain and the Failing Mind summarizes the preoccupation of Western culture with dementia as defining not only the aging process but also the very essence of the identity. Zimmermann, a trained neuro-scientist and a sharp-eyed literary critic, illustrates how scientific models of mind and brain, of neural networks and brain chemistry, reflect the cultural assumptions of how mind, brain, and body are believed to function. Her close reading of the literary reflections on aging and dementia from the Edwardians to contemporary film shows that science is as often indebted to cultural paradigms as cultural paradigms reflect scientific assumptions. If you still believe that playing Sudoku will prevent you from developing Alzheimer’s perhaps you should better spend your time reading this book!” (Sander L. Gilman, Distinguished Professor of the Liberal Arts and Sciences, Emory University, USA)
The Poetics and Politics of Alzheimer’s Disease Life-Writing (Palgrave, 2017) is the first book-length exploration of the thoughts and experiences expressed by dementia patients in published narratives over the last thirty years.
It is part of the Literature, Science and Medicine series of the Palgrave imprint. Thanks to Wellcome Trust funding this publication is open access and you can download it free from the publisher’s website.
I came to the research for this book during my investigations into molecular mechanisms that could explain cell death in conditions like Alzheimer’s disease: as I describe in the introduction to the book, I increasingly felt that medico-scientific research left me removed from questions central to the experience of cognitive decline: how do patients and caregivers cope with dementia in daily life; how do they experience memory loss; and how do they negotiate with what is perhaps best described as the cultural mainstream narrative about dementia (a narrative of loss, decline, dependence, passivity – a narrative of living death). In the search for answers to these questions I began reading narratives by patients and caregivers. My analysis of these texts in literary terms found form in this book.
I contrast third-person caregiver and first-person patient accounts from different languages (English, French, German, Italian and Spanish) and a range of media (memoirs, diaries, picture and photo books as well as film and comic). I particularly focus on the poetical and political questions these narratives raise: what images do narrators appropriate; what narrative plot do they adapt; and how do they draw on established strategies of life-writing. But I also explore how these accounts engage with the culturally dominant Alzheimer’s narrative, and address how they relate to discourses of gender and ageing.
Bringing together literary scholarship and the medico-scientific understanding of dementia as a neurodegenerative condition, I argue that, first, patients’ articulations must be made central to dementia discourse; and second, committed alleviation of caregiver burden through social support systems and altered healthcare policies requires significantly altered views about ageing, dementia, and Alzheimer’s patients.
Among the memoirs, photo and picture books, comics and films discussed in my book are:
- Josh Appignanesi, Ex Memoria. Some Memories Fade. Others Keep Returning
- Claude Couturier, Journal d’une Alzheimer
- Robert Davis, My Journey into Alzheimer’s Disease. Helpful Insights for Family and Friends. A True Story
- Thomas DeBaggio, Losing My Mind. An Intimate Look at Life with Alzheimer’s, and When it Gets Dark. An Enlightened Reflection on Life with Alzheimer’s
- Donatella Di Pietrantonio, Mia madre è un fiume
- Annie Ernaux, Une femme, and Je ne suis pas sortie de ma nuit
- Arno Geiger, Der alte König in seinem Exil
- Giovanna Venturino, Il tuo mare di nulla. La mia mamma e l’Alzheimer
- Jean Grothé, Un journal photographique
- Rachel Hadas, Strange Relation. A Memoir of Marriage, Dementia, and Poetry
- Cary Smith Henderson, Partial View. An Alzheimer’s Journal
- Sarah Leavitt, A Story about Alzheimer’s, My Mother, and Me
- David Sieveking, Vergiss mein nicht. Wie meine Mutter ihr Gedächtnis verlor und meine Eltern die Liebe neu entdeckten
- Richard Taylor, Alzheimer’s from the Inside Out
From the back of the book:
“This very fine study reflects capacious knowledge and insight into a condition that, as the author suggests, is one of the most complex and fraught for patients and caregivers, and one of the most misunderstood by policy makers. The Poetics and Politics of Alzheimer’s Disease Life-Writing offers an important intervention at a critical time, and deserves to meet with a wide readership.” (Jane F. Thrailkill, University of North Carolina, USA)
“Despite the recent spate of books about Alzheimer’s disease by doctors, patients, and caregivers, no other writer to my knowledge has attempted to do what the humanities scholar and research scientist Martina Zimmermann has accomplished here: an analysis of dementia narratives attuned to the medical, political, sociological, ethical, and poetic aspects—that is, the full human experience–of living with inexorable, unforgiving cognitive decline.” (Eileen Gillooly, Columbia University, USA)
Review by Julie E. Kutac on the Durham University Centre for Medical Humanities blog.
Review by Kathryn Lafferty Danner in the Journal of Medical Humanities.
Review by Alastair Morrison in Age Culture Humanities.