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.

KEYWORDS:

• Dementia
• Lisa Genova
• Liudmila Ulitskaia
• narratives
• fictional characters

Disclosure statement

Jehanne Gheith’s article is a revised reprint of “Still Alice, Always Elena: Dementia as a World of Possibility” which was published in The Russian Medical Humanities: Past, Present, and Future,” eds. Melissa Miller and Konstantin Starikov, Rowman & Littlefield, 2021. Used with permission.

Notes

¹ In order to comply with HIPAA rules, this is not her real name. Throughout this essay, I use only pseudonyms when I refer to patients and family members.

² Throughout, I will use the term “dementia” often as it can cover both Alzheimer’s and dementia.

³ Applewhite (2016), This Chair Rocks: A Manifesto against Ageism, New York: Networked Books; Power (2017), Dementia beyond Drugs: Changing the Culture of Care, 2nd ed. (Baltimore, MD: Health Professions Press, Inc.); Taylor (2008), “On Recognition, Caring, and Dementia” Medical Anthropology Quarterly Dec. 22(4): 313–35.

⁴ Rebecca Solnit, The Faraway Nearby (New York: Penguin, 2013); Taylor (2008), “On Recognition, Caring, and Dementia”; Walrath, 2013), Aliceheimer’s: Alzheimer’s Through the Looking Glass (Penn State University Press).

⁵ I want to acknowledge that those whose relatives have dementia or Alzheimer’s may feel that I am dismissing the deep difficulty of seeing someone diminished by the disease and the aching pain of that. I hope that I am not doing that; my intent is the opposite – my intent is to fully acknowledge that pain.

⁶ In Kali Quinn’s play “Vamping,” there is a dementia test that illustrates the same point: the patient, Eleanor, wants to have a party (keep the cares together), but the medical professional conducting the test gives Eleanor demerit points for not sticking with the test – which, from Eleanor’s point of view, is pointless. In this performance, Quinn beautifully points out the tyranny of such tests.

⁷ I recognize that it is a bit awkward to cite Russian literature in an essay that is about an American and a Russian novel. Although of course my imagination is shaped by other literature as well, it is Russian literature in which I have lived deeply for more than 25 years, so it deserves a special recognition. This is especially important since Russian literature is so often left out of discussions of world literature.

⁸ Many Medical Schools now have narrative medicine programs, but they are often in addition to the full schedule of Medical School. And yet, students come. In the Trent Center Program for Bioethics, Humanities, and History of Medicine, Dr. Brian Quaranta and I teach a class on Plague Literature at Duke Medical School and many others also teach in this program, called Moral Moments.

Additional information

Notes on contributors

Jehanne Gheith

Jehanne Gheith, Ph.D., MSW, LCSW, is Associate Professor of Slavic Languages and Literature and Duke University. Her many publications include seven books on Russian literature.