‘The Poetics and Politics of Alzheimer’s Disease Life-Writing’ reviewed by Julie E Kutac

The Poetics and Politics of Alzheimer’s Disease Life-Writing by Martina Zimmerman (Palgrave, 2017).

‘The Poetics and Politics of Alzheimer’s Disease Life-Writing’

In The Poetics and Politics of Alzheimer’s Disease Life-Writing, Martina Zimmermann undertakes the ambitious task of critically assessing the small canon of book-length illness narratives written by people living with Alzheimer’s and their caregivers.  The timeliness of the work cannot be exaggerated:  with more than twenty-six million people living with Alzheimer’s worldwide, the disease presents a true global public health crisis.  Despite the prevalence of Alzheimer’s and other forms of dementias, there remains a dearth of published Alzheimer’s illness narratives and scholarship analyzing those texts.  To date, Zimmermann’s study is the only monograph that critically examines Alzheimer’s narratives and as such, her book is an important contribution to the discourse on literary representations of the Alzheimer’s disease experience.

Zimmermann’s scope is wide and includes a variety of forms from film and graphic novels to memoirs and diaries from 1982, which marked the publication of the first Alzheimer’s caregiver narrative, until the first person print-on-demand texts in 2014, when she chooses to end her examination.  She specifically focuses on “accounts available on the book market” rather than patient blogs and interviews.  A book length piece “demands an articulation sufficiently polished for communication aimed at political outreach,” while blogs or interviews, on the other hand, assume that the reader shares knowledge of the illness experience and can leave details unsaid.  Given that Zimmerman is interested in the political implications of the narratives she studies, this choice makes sense. Her inclusion of American, British, German, and French texts demonstrates an impressive breadth of knowledge about the status of the subgenre within a Western context marked by similarities in the ‘socio-economic, healthcare and ethical challenges in the confrontation of the condition’ (p. 15). (In footnotes, Zimmermann refers to two studies on dementia in Eastern cultures, but excludes them from her study.)

Zimmermann weaves throughout the work reasons for the dearth of dementia narratives.  No pharmacological remedy can cure or even slow the progression of the disease; moreover, the degenerative nature of the disease presents distinct representational challenges since the disease specifically affects language and writing abilities.  Further, Alzheimer’s and dementia are often linked to stigmatizing stereotypes about loss of personhood and the self, which Zimmermann acknowledges when she writes that she considers Alzheimer’s disease to be “the illness of stigma and fear”(p.  6).

Zimmermann’s study offers a useful delineation of how the forms and metaphors of Alzheimer’s narratives have changed over thirty years to reflect the shifting political discourse from one primarily grappling with loss and decline to one that has taken an activist turn and now includes writers reckoning with the notion of continued presence despite illness.  Zimmerman placed the texts into the political context of the times in which they were written, but she also acknowledges that a limitation of the book is that the scope prevented her from considering more deeply the ‘historical grounding of frequently reifying and infantilizing patient presentations’ (p. 131). Alzheimer’s research and political advocacy in both the United States and the United Kingdom have accelerated in the last twenty years, and her political argument would have been strengthened by including more discussion on the interplay between the narratives and the broader cultural discourse on the implications of a dementia diagnosis.

After introducing the project and grounding the work within narrative theory, she considers the earliest Alzheimer’s caregiver narratives.  Zimmermann organizes her study in multiple, concurrent ways.  She situates the works temporally, examining how the texts are influenced by and shape the wider sociopolitical discourse at the time of their construction.  Over two dense chapters, she compares the texts of female caregiver to male caregivers as well spouse caregivers to those of adult children, carefully delineating the ways in which these caregivers construct their emerging dual identities:  as that of a spouse or child and caregiver.  She analyzes the ways in which gender influences how caregivers structure their narrative, arguing that the demands of caring for a person with Alzheimer’s disease supersede the more typically gendered tropes of who provides care and how that care is delivered.

Zimmermann then turns her attention to narratives written by persons living with a dementia diagnosis (either Alzheimer’s or another form of dementia, such as Lewy-Body or Frontotemporal dementia).  While I appreciated the early chapters, Zimmermann’s writing was most interesting once she began talking about the first person narratives of Alzheimer’s and tracking the ways these narratives have evolved alongside the development of patient activism.  Zimmermann reveals ways in which the narratives have shifted from more linear, edited stories that focus upon loss to ones that may be more fragmented in form, but whose content demonstrates remaining capabilities. She demonstrates how Alzheimer’s narratives may fit the form of neither the chaos nor the journey narrative; instead, Zimmermann argues that some of the later Alzheimer’s narratives rise above the disabling stereotypes of the degenerative disease to reclaim notions of autonomy and authority in spite of cognitive challenges.  Zimmermann goes further to suggest that more recent writers of first person Alzheimer’s narratives can serve as a kind of postmodern prophet, using fragmented language, brief diary entries, and other creative uses of language that open a space in which the person could continue to act as an agent with a continued sense of self.

Early in the book, Zimmermann writes that her study is ‘meant to sharpen the politician’s, health-economists’ and care providers’ eyes to the concerns of patients and caregivers’ (p. 6).  Her goal may be stymied by the assumptions that Zimmerman seems to make about her reader.  The monograph presumes that the reader has familiarity with narrative theory in general, and the genre of pathographies and illness narratives specifically.  In writing the book, Zimmerman additionally aims to ‘amplify the voices of those whose texts [were] critiqued’ (p. 130).  This noble goal of amplification is supported by her articulate and well-researched volume, but I worry that her book will feel too niche and thus unapproachable to an audience beyond those who are already well versed in narrative theory.

Stylistically, although Zimmermann includes a helpful annotated bibliography she seems to presume that the reader has a working knowledge of the texts, too.  Her interdisciplinary work incorporates quotes from social psychologists (Tom Kitwood), sociologists (Anthony Elliott), and anthropologists (Lawrence Cohen), among others.  Though an admittedly small criticism, a modifier introducing each scholar would make the work more easily identifiable to those who are less familiar with the specific texts she has chosen to include.  Still, her work will benefit those medical humanities’ scholars who are interested in resisting the silencing tendencies of the medico-scientific discourse about dementia. Through her writing, Zimmermann has created a space in which the particular stories of dementia can help readers develop a deeper, more empathic understanding of the universal experience of illness and the human who remains in spite of loss.  In this way, Zimmermann’s monograph continues the tradition of helping those who are students of the medical humanities cultivate more morally capacious ways of being in the world.

Julie Kutac earned her MA in Religious Studies from Rice University and her PhD in Medical Humanities from the University of Texas Medical Branch at Galveston.  As the Professional Education and Research Specialist at the Alzheimer’s Association-Houston & Southeast Texas Chapter, Dr. Kutac prepares and delivers humanities based education programs to health care providers across the southeast Texas, as well as liaises with the scientists studying Alzheimer’s disease in the Texas Medical Center.  Her research interests include the moral dimensions of dementia care, narrative gerontology, and understanding the subjective experience of dementia.

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