Still Alice, Always Elena: New Stories about Dementia

ABSTRACT As a hospice social worker and tenured professor of Russian literature, I have seen how the stories we tell and re-tell affect how patients, caregivers, and medical professionals live with many different diseases. My essay explores one aspect of this: how the stories we tell about dementia shape our understanding and treatment of cognitive decline. Through an analysis of the novels Still Alice (by Lisa Genova) and The Kukotsky Case (by Liudmila Ulitskaia; English translation by Diane Nemec Ignashev, 2016), I show how telling a story about the possibilities of dementia can help us to reshape our conception of dementia and that, in turn, can change the experience of caregivers, patients, and medical professionals. I argue that fiction can be a powerful agent of transformation, both personal, and, in time, societal. A deep dive into two novels and one condition reveals more than a broader analysis would as these two novels demand close readings. The implications of the essay are larger as I invite medical professionals to think about story and narrative skill in understanding all kinds of disease-and indeed, how “medicalizing” and/or pathologizing conditions such as dementia can work against deeper connections and engagement.