Article Highlight: Vol. 41, Issue 2, “Engaging with Dementia: Moral Experiments in Art and Friendship”

This week, we are featuring an Article Highlight written by Monica Windholtz, an Integrated Graduate Studies student in the Anthropology and Bioethics departments at Case Western Reserve University. Monica highlights Janelle S. Taylor’s article from the latest edition of Culture, Medicine, and Psychiatry (Vol. 41, Iss. 2), entitled Engaging with Dementia: Moral Experiments in Art and Friendship. The article examines activities and social circumstances used to involve people with dementia in the world. Taylor depicts the steps involved in creating ‘moral experiments’ that plant patients with dementia in life. Through interviews with caregivers of people with dementia, Taylor explores the role of art and community in engaging those with dementia.


In this article, Taylor analyzes the experiences of individuals with dementia as relayed through the narratives of their caregivers. The article begins with the concept of media portrayals of dementia. Dementia is typically not represented well in the media, with stories devoid of “either subtlety or compassion” (285). In 2014, Julianne Moore received critical acclaim and an Academy Award for her role as the titular character in the film Still Alice, based on a book. The book and movie both chronicle the decline of Alice Howland, a brilliant scientist, as she suffers from early-onset Alzheimer’s Disease. While her husband and two oldest children are unable to confront the changes in Alice and focus only on treatment, her daughter Lydia attempts to understand her mother and engage with Alice’s new world. The article highlights Lydia’s artistic interactions with her mother to introduce the concept of the positive impacts of art and relationships to those with dementia.

While there is currently no effective cure for dementia, caregivers attempt to guide those with dementia to live full lives. The arts have especially served as a way to engage people with dementia, using programs in “storytelling, poetry, painting, dance, theater, [and songwriting]” (287). These programs engage and enrich the lives of individuals suffering with dementia. Artistic forms of expression help to imbue the lives of dementia patients with meaning. In Seattle, such programs to connect with dementia patients have been increasing.

Taylor labels these programs as “moral experiments,” following the work of Cheryl Mattingly where experiments are created by people trying to do the right thing (289). By attempting to enrich the lives of those with dementia, artistic programs are exploring new ways to bring meaning to their daily experiences.

Through an analysis of her interviews, Taylor recounts the experiences of those who have served as caregivers for family members or friends with dementia. In one case, a woman named Janet offered to help engage her friend’s husband, who was suffering with dementia. Their interactions formed a strong friendship between Janet and the husband, enabling him to still feel a sense of community, even as a patient with dementia.

Taylor found that caregivers and friends of those with dementia often see themselves as modeling or teaching proper behaviors to the rest of society, which may exhibit apprehension or discomfort when engaging with dementia patients. Since these anxious attitudes are common, caregivers may have interventions with their social groups or instruct others in how to interact with the individual with dementia. According to Taylor, people should attempt to interact with dementia patients, as they still understand the social environment, even if the context is not clear. Thus it is important for communities and social groups to still recognize the person with dementia in social settings.

Another striking example of people coming together was with the caregivers of Jacqueline, an immigrant woman in Seattle. Jacqueline had relied on the care and help of her mother in the home for many years, but soon after her mother’s death Jacqueline developed dementia. Those that knew Jacqueline were drawn into greater involvement in her life because of her dementia, and helped with the tasks her mother had otherwise taken care of. The group even created a calendar to organize their efforts to aid her.

The Still Alice novel uses the motif of a butterfly to reflect the theme of transformation while still being the same being. As discussed by Taylor, one caregiver of a dementia patient referred to the group that sought to improve the patient’s life as their ‘cocoon.’ The article reflects on the prominent transformations that patients with dementia undergo, and how cocoons and butterflies can both serve as symbols for the moral communities that protect and engage the patients.

In conclusion, Taylor reflects how Still Alice shows that it is not only science and medicine that can improve the lives of those with dementia. Engaging dementia patients through art and the community can help to improve their lives. Finally, there is further room for anthropologists and other researchers to understand and document these other forms of support and improvement.

Advertisements

Medical Humanities as an Intersection: Fostering Cross-Disciplinary Intellectual Spaces, A Commentary

This week, we are featuring a commentary on the medical humanities, which first appeared this week here on The Daily Dose blog. This piece explores the nature of interdisciplinary research on the social, cultural, and experiential dimensions of medicine. It also spotlights the new Medicine, Society & Culture initiatives at Case Western Reserve University.


 

When I set out to write this commentary, I first intended on penning a blog piece about my own definition of the medical humanities as someone trained in both the humanities and the social sciences. Having come to medical anthropology from a past life in literary studies, my work has straddled the fissure between humanities and qualitative social sciences. I have presented work both on the history and theatrical presence of anatomical learning in the English Renaissance, and on my ethnographic research with medical students in the gross anatomy lab today. Sometimes, my work is focused solely on the present; in other instances, I turn to the historical past to inform my work as a scholar of contemporary medical training. My vision of the medical humanities is one that arrives from both within and beyond traditional disciplinary boundaries.

cropped-2009cover-copy.jpg

My approach, however, is but one. I recognize that the medical humanities do not offer a single or unified outlook on human health, illness, and medical practice. In fact, the medical humanities are populated by historians and artists, poets and literary scholars, philosophers and social scientists. Our individual professional identities may be firm—I identify now as an ethnographer and anthropologist, not a literary scholar—but the social, cultural, historical, experiential, and existential study of medicine is simply too complex to be dominated by a single field. The medical humanities (and its ally, social medicine), welcomes perspectives on the humanistic study of medicine informed by our varied native disciplines. More than a single field, the medical humanities often serve as a crossroads: an intellectual intersection (physical, virtual, or social) at which scholars across fields gather in dialogue, whether they identify with a single specialty or as interdisciplinary scholars. For this reason, and regardless of disciplinary allegiances, we can all benefit from the medical humanities as a site of discussion that welcomes myriad voices. Diverse perspectives encourage us to analyze human health and medical problems from numerous angles. As we all carry with us our own analytical methods and theories to this junction, so too do we leave these dialogues having ourselves learned and gained the critical perspectives of our peers. This sharpens our focus anew on social, cultural, and medical problems for which one discipline lacks all answers.

The value of the medical humanities is that they enable all of us to see medical and social problems through multiple lenses. If we cannot fully grasp a complex medical problem through ethnography alone, we turn to historical approaches to complete our understanding of the issue at hand. If individual illness narratives beg to be woven together through other data, we look to sociology and economics to conceptualize the underlying health inequities faced by diverse populations, amongst other socio-medical problems. And, further, when we strive to understand how medical science is confronting illness and suffering today, we turn to nurses, social workers, therapists, physicians, and other health professionals whose day-to-day interaction with patients is deeply informative for our own research. Indeed, clinicians also benefit from our work: the humanities have been widely integrated into coursework for physicians in the United Kingdom[1] and the United States[2]. While obstacles remain in the creation and implementation of medical humanities curricula for future medical practitioners[3], this coursework has widened the intellectual space in which medical humanists exchange ideas with multiple audiences.

Whether medical humanities programs are physically housed within humanities departments, or whether they are exported into numerous health education venues, they remain a space for invaluable cross-disciplinary conversation. I have been fortunate to serve as the administrative coordinator of a medical humanities and social medicine collaborative that has overcome departmental boundaries in creating a new space for scholarly dialogue. This new university-wide initiative in medical humanities and social medicine (MHSM) is anchored by a Bioethics MA degree track entitled Medicine, Society and Culture at Case Western Reserve University. Though the degree program is housed in the School of Medicine, our MHSM (Medical Humanities and Social Medicine) advisory committee (which oversees university-wide activities in medical humanities[4]) includes historians, philosophers, literary scholars, social scientists, rhetoricians, and many others. Across the university, we facilitate lectures, administer competitive conference and research grants for students, and support faculty scholarship and teaching innovation. In the region, we collaborate with neighboring institutions to spearhead events that bring together scholars in all disciplines to discuss common themes in the social and contextual study of medicine, illness, and human health. In addition, we look forward to welcoming our first entering class of graduate students in the Medicine, Society, and Culture track in the Bioethics graduate program this Fall 2016. These students will complete clinical rotations, bioethics coursework, and multidisciplinary training in medical humanities and social medicine.

In sum, the Medicine, Society and Culture initiative has become another significant intersection at which scholars—both practicing academics and new graduate students alike—are able to trade theories, exchange methods, and discuss contemporary intellectual issues with fellow medical humanists and social scientists. Thus, our program seeks to both produce new scholars who approach illness and medicine as inherently multi-faceted human experiences, and to facilitate dialogues with current scholars within various departments who strive to complicate their own understandings of health and the human condition.

Beyond university programming, however, there are many ways that all medical humanities scholars strive—and should continue—to reach across departments and disciplines to share our methods, theories, approaches, and reflections on medicine with one another. This blog is one such space that beautifully forges virtual connections across academic audiences with a shared interest in health, illness, and medical practice. My own field, medical anthropology, by its nature requires researchers to inform their claims through many kinds of data that necessitate several forms of analysis: all which dovetail approaches in other fields. So too did my previous training in literary studies require me to be conversant in historical methods, in close reading techniques, and in the same inductive reasoning skills that I now apply to my ethnographic work. No discipline is an intellectual island: and if there is a universal value of the medical humanities, it is that it has made junctures out of disparate disciplines. It is at once clinical, scientific, and humanistic.


 

About the Author: Julia Knopes is a PhD candidate in anthropology at Case Western Reserve University, and serves as the administrative coordinator for the newly-launched MA Track in Medicine, Society & Culture in the CWRU Department of Bioethics. Julia’s research examines the socio-material basis of professional role development amongst American medical students. She holds an MA in Humanities from the University of Chicago and a BA in English from Washington & Jefferson College. You can learn more about Julia’s work and current research here.

References

[1] Macnaughton, Jane. (2000). “The humanities in medical education: context, outcomes and structures.” Journal of Medical Ethics: Medical Humanities 26: 23-30.

[2] Hunter, KM; Charon, Rita; Coulehan, Jack. (1995). “The study of literature in medical education.” Academic Medicine 70(9): 787-794.

[3] Shapiro, Johanna; Coulehan, Jack; Wear, Delese; Montello, Martha. (2009). “Medical Humanities and Their Discontents: Definitions, Critiques, and Implications.” Academic Medicine 84(2): 192-198.

[4] Information on members of the CWRU MHSM advisory committee can be found here: http://case.edu/medicine/msc/about/advisory-committee/

Book Release: “The Law of Possession: Ritual, Healing, and the Secular State”

Screen Shot 2015-09-13 at 7.10.00 PM

Image via Oxford UP website

Out this November 2015 from Oxford University Press is an edited collection by William S. Sax and Helene Basu entitled The Law of Possession: Ritual, Healing, and the Secular State. The text presents both contemporary and historical case studies of the relationship between spiritual conflict and judicial exchanges across cultures. While rituals to exorcise spirits from the afflicted are typically characterized solely as acts of healing, they are also scenarios in which spirit healers do justice by the possessed by driving out a spirit who has committed an act of evil against the person they inhabit. Spirit possession may similarly provide valuable opportunities for members of a community to contact restless spirits through a human oracle. These otherworldly entities may then offer evidence to the living as to how to avenge or appease them, thereby restoring social harmony. Healing, justice, cosmic order, and religion are thus closely integrated within these culturally meaningful negotiations.

The authors of the text challenge the assumption that these spiritual encounters– which have consequences for both medicine and the law in many societies– are antiquated and do not belong in modern societies or in secular governments. By drawing on examples from East Asia, South Asia, and Africa, the authors assert that spiritual healing and law nevertheless persist in the contemporary age as a way to meet social and religious needs in many cultures.

Learn more about the book (in paperback) by clicking here.

Link to the hardcover copy: https://global.oup.com/academic/product/the-law-of-possession-9780190275747?cc=us&lang=en

About the editors: William Sax teaches at the University of Heidelberg, where he serves as the Chair of Cultural Anthropology at the South Asia Institute. Helene Basu is the director of the Institute of Social Anthropology at Münster University.

From the Archive: Caregiving and Dementia in Urban India

In the “From the Archive” series, we will highlight articles published throughout the journal’s history. We look forward to sharing with our readers these samples of the innovative research that CMP has published on the cultural life of medicine across the globe.

cards3

Recently, one of our readers on the Culture, Medicine, and Psychiatry Twitter account requested that our next “From the Archive” post address an aspect of aging and community. In the spirit of the reader’s suggestion, this week we are featuring a 2008 article by Bianca Brijnath and Lenore Manderson entitled “Discipline in Chaos: Foucault, Dementia and Aging in India.” (you can find out more about the article here: http://link.springer.com/article/10.1007/s11013-008-9111-5.)

The authors posit that caregivers for those with dementia are important providers of structure: they are responsible for the patient’s hygiene, diet, and medical needs, as well as accountable for the actions of people who, experiencing symptoms of dementia, sometimes act out in ways which are not consistent with public cultural norms. Typically in India, such care falls into the hands of younger relatives. Domestic caregiving by these family members “prevents the demented body from threatening the stability of the social body.” There are tremendous “social anxieties,” the authors write, surrounding the potential for someone with dementia to resist normative behaviors per the local codes of social life.

The Foucauldian stream of thought here is quite present: the caregiver must “discipline” the body of the dementia patient to reinforce the cultural codes of the society in which both actors live. Although there exists the notion of seva, or the submission of younger relatives to the direction and advice of older relatives, this idea of the respected and powerful elder is complicated in the face of dementia where the power to attend to another person is rather reversed. Instead of being disciplined by the familial patriarchs or matriarchs, younger relatives must both discipline the elder who is unable to provide the social structure for themselves, as well as their own bodies by taking on new routines and practices to accommodate their family member with the illness.

Power, however, is still bi-directional: those with dementia have extraordinary power in altering the routines of their familial caregivers, and even act out violently: the authors note they may “kick, hit, punch, bite, and threaten with a weapon” when they are upset, and are not necessarily expected to limit these actions on their own due to their condition. The transactions of power, agency, and authority in these relationships are resonant with similar social exchanges as explored via the Foucauldian lens in other Western settings.

Brijnath and Manderson’s piece highlights important features in the care of dementia patients, and demonstrates that community-based models of caregiving for the elderly are not as simple as the removal of power from the elderly individual and the installation of authority in the caregiver. The caregiver, too, is both self-disciplined and disciplined by the acting out of their ward.