Engaging with Dementia: Moral Experiments in Art and Friendship
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The box-office as well as critical success of the 2014 major motion picture Still Alice, starring Julianne Moore in the title role and based on the bestselling novel of the same name by the Harvard-trained neuroscientist Lisa Genova (Still Alice. Simon & Schuster, New York, 2009), marked an important moment in public cultural representations of people with dementia. Still Alice tells the story of Alice Howland, an eminent scientist whose increasing memory lapses are eventually diagnosed as early-onset Alzheimer’s, and chronicles the transformations in her family relationships as her husband and three children respond to her decline in different ways. Alice’s husband, her son, and her older daughter all respond by turning toward science, while her younger daughter Lydia seeks to engage her mother as she is now, and turns toward art and relationships. Taking Still Alice and the figure of Lydia as an entry point, I discuss arts-focused efforts to improve the lives of people with dementia, and draw upon ongoing interview-based research on the topic of dementia and friendship, to offer an account of some of the ways that people I have spoken with are actively experimenting with art and with relationships in the face of dementia. I argue that these efforts can be understood as “moral experiements,” in the sense articulated by Cheryl Mattingly (Moral Laboratories: Family Peril and the Struggle for a Good Life. University of California Press, Berkeley, 2014). Although Lydia is a fictional character, her response to Alice’s dementia points toward the kinds of moral experimentation that are in fact possible, and quietly being practiced, by ordinary people every day.
KeywordsDementia Art Friendship Ethnography
For crucial conversations, introductions, comments and suggestions I extend warm thanks to Marigrace Becker, Catherine Besteman, Soo Borson, Faye Ginsburg, Iben Gjødsbøl, Lone Grøn, Sharon Kaufman, Lene Koch, Teresa Kuan, Sarah Lamb, Cheryl Mattingly, Ann O’Hare, Jeannette Pols, Lillian Prueher, Priti Ramamurthy, Rayna Rapp, Lorna Rhodes, Michael Rosenthal, Aaron Seaman, Lesley Sharp, Mette Svendsen, Lynn Thomas, and Lisa Vig. I am grateful to Melissa Liu for research assistance and to the anonymous reviewers for excellent substantive suggestions that made this article better. Above all I would like to acknowledge my gratitude to the individuals who kindly shared with me their heartfelt and thoughtful reflections on friendship and dementia.
- Alzheimer’s Association 2014 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 10(2):208.Google Scholar
- Basting, A .D. 2009 Forget Memory: Creating Better Lives for People with Dementia. Baltimore: The Johns Hopkins University Press.Google Scholar
- Basting, A. D., M. Towey, and E. Rose. 2016 The Penelope Project: An Arts-Based Odyssey to Change Elder Care. Iowa City: University of Iowa Press.Google Scholar
- Bateson, M. C. 2001 Composing a Life. New York: Grove Press.Google Scholar
- Elderwise 2016 http://www.elderwise.org/, accessed June 16, 2016.
- Falcus, S. 2014 Storying Alzheimer’s Disease in Lisa Genova’s Still Alice. EnterText 11:73–94.Google Scholar
- Frye Museum 2017 http://fryemuseum.org/creative_aging/, accessed June 16, 2016.
- Genova, L. 2009 Still Alice. New York: Simon & Schuster.Google Scholar
- Genova, L. 2015 Lisa’s call to action, http://lisagenova.com/donate-to-cure-alzheimers-fund/, accessed December 22, 2015.
- Graeber, D. 2011 Debt: The First 5,000 Years. New York: Melville House.Google Scholar
- Infinity Box Theatre Project 2017 http://infinitybox.org/TE.html, accessed January 30, 2017.
- Killick, J. and K. Allan. 2011 Getting In the Picture: Using Photography and Video and Visual Materials to Enhance Communication. In Creative Approaches in Dementia Care. H. Lee and T. Adams, eds. New York: Palgrave MacMillan.Google Scholar
- MacArthur Foundation 2017 https://www.macfound.org/fellows/956/, accessed January 30, 2017.
- Momentia Seattle 2016 http://www.momentiaseattle.org/, accessed June 16, 2016.
- Moser, I. 2010 Perhaps Tears Should Not Be Counted, but Wiped Away: On Quality and Improvement in Dementia Care. In Care in Practice: On Tinkering in Clinics, Homes and Farms. J. Pols, I. Moser and A. Mol, eds. Bielefeld: Transcript Verlag.Google Scholar
- Nabokov, V. 1989 Speak, Memory: An Autobiography Revisited. New York: Vintage Books.Google Scholar
- Solnit, R. 2009 A Paradise Built in Hell: The Extraordinary Communities that Arise in Disaster. New York: Penguin.Google Scholar
- Staff 2015 Julianne Moore’s Oscars 2015 Acceptance Speech in Full: ‘I’m Thrilled We were Able to Shine a Light on Alzheimer’s Disease’. The Independent, February 23, http://www.independent.co.uk/arts-entertainment/films/oscars/julianne-moore-oscars-2015-acceptance-speech-in-full-im-thrilled-we-were-able-to-shine-a-light-on-10064112.html, Accessed November 10, 2015.
- Taylor, J. 2017 Should Old Acquaintance Be Forgot? Friendship in the Face of Dementia. In Successful Aging as a Contemporary Obsession: Global Perspectives. S. Lamb, ed., pp. 126–139. New Brunswick, NJ: Rutgers University Press.Google Scholar
- Wanucha, G. 2016 The Art of Alzheimer’s, http://depts.washington.edu/mbwc/news/article/the-art-of-alzheimers-wows-seattle, Accessed January 31, 2017.