The Poetics and Politics of Alzheimer’s Disease Life-Writing 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 aging.
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 aging, 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
- Christine Bryden, Dancing with Dementia. My Story of Living Positively with Dementia
- Margarita Retuerto Buades, Mi vida junto a un enfermo de Alzheimer
- Couturier, Claude, 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.