A Review of ‘The Poetics and Politics of Alzheimer’s Disease Life-Writing’ by Martina Zimmermann

These are questions that a person can often ignore when he or she is moving about a day, unencumbered by the stress of dealing with dementia.  When a person is living with dementia or caring for someone with dementia, however, these questions can occupy a significant amount of a person’s thinking.

A handful of people have worked to answer these and other questions on paper.  They have gathered and organized their thoughts, written down their experiences, and shared their struggles, joys, and lessons learned.  Editors have helped the writers craft the words into readable stories and get them to the shelves of bookstores and libraries.

By composing and subsequently publishing their work, these people have worked to make meaning out of their illness experience through writing.  Each writer has a goal for sharing their story of sickness.  Writers have shared their stories so that others might not suffer so much or so that individuals who have not encountered dementia might have a better understanding of what the experience of illness feels like.  Some writers have wanted the reader to know that– despite the illness– they are “still here”.  Others want the readers to know what exactly has been lost.

Scholars in the medical & health humanities are keenly interested in learning what stories can teach us about how humans make sense of life, illness, vulnerability, and death. Martina Zimmermann, a scientist and health humanist, has gathered and examined all of the book-length narratives of Alzheimer’s between 1982 and 2014.   I reviewed the book, The Poetics and Politics of Alzheimer’s Disease Life-Writing, by Martina Zimmermann, over at the blog for the Center for Medical Humanities at Durham University in the United Kingdom.   For those of you interested in how caregivers and people with Alzheimer’s write about their experiences and– in doing so– construct a narrative self, then please take a read of the review and the book.

 

 

Julie Kutac, PhD

Professional Education & Research Specialist Dr. Julie Kutac received her BS in Molecular Biology with a minor in Theology from Texas Lutheran University, her MA in Religious Studies from Rice University, and her PhD in Medical Humanities from the University of Texas Medical Branch. Dr. Kutac's research at Rice focused upon the ethics of memory and illness narratives that captured the subjective experience of Alzheimer's disease. At the Institute for the Medical Humanities at the University of Texas Medical Branch at Galveston, Dr. Kutac continued to explore her interests in aging and elder care as a National Institute of Aging Pre-Doctoral Fellow with the Sealy Center on Aging. Her dissertation focused upon suffering, the elderly, and ways that the medical humanities can improve the practitioner-patient relationship. Dr. Kutac currently works as the Professional Education and Research Specialist for the Alzheimer's Association, Houston and Southeast Texas Chapter. In this role, she educates health care practitioners and liaises with the Alzheimer's Association funded scientists in the Texas Medical Center.