Yesterday we highlighted Janelle S. Taylor’s article from the latest edition of Culture, Medicine, and Psychiatry entitled Engaging with Dementia: Moral Experiments in Art and Friendship, available here. In this post, we follow up with a link to a recent Question & Answer session with Taylor by Kim Eckart, posted on the University of Washington Today website. Included with the Q & A interview is a video with Taylor entitled “How friendships evolve when one person has dementia.” In the video, Taylor discusses her research and the implications of the moral challenges taken on by people who have friends with dementia. Visit the UW Today post here.
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.
In our “From the Archive” series, we highlight an article from a past issue of the journal. In this installment, we explore Sarah Horton’shere. This article was featured in Volume 33, Issue 1 (March 2009).available
While there is still considerable confusion and uncertainty surrounding the current state of immigration in the United States and the international movements of people, our journal article authors have continually acknowledged the importance of focusing on the lived experience of individuals within these larger political contexts. In her article, Horton discusses transnational motherhood through the embodied distress of mothers and children, showing that their suffering cannot be examined separately. Through her analysis of the narratives of undocumented Salvadoran mothers living in the United States, Horton explains the pain of these mothers’ undocumented status is experienced within the intersubjective space of the family.
Horton begins by describing Elisabeta, a Salvadoran mother working in the United States while her young son and elderly mother remain in El Salvador. Elisabeta was part of Horton’s research at a Latino mental health clinic in a New England city. Since Elisabeta was unable to hold or touch her young son, Carmelo, she instead carried his photo with her wherever she went. Elisabeta described her life as divided, “I work here but my heart lives there.” This division of “here” and “there” in transnational motherhood is not uncommon for undocumented immigrants who left their children in their home countries.
As the postindustrial, technology-based economy has grown within the U.S., women are increasingly migrating alone to find work in the high-tech sector, reshaping the immigrant family and trans-nationalizing the meaning of motherhood. At the same time, the 1996 Illegal Immigration Reform and Immigrant Responsibility Act (IIRIRA) increased both border policing and militarization as well as deportation and family separation in border communities. This meant that mothers working in the U.S. have found it more difficult to be reunited with their children, fearful of the dangerous and expensive crossing for their undocumented children, and the inability of the women to return home to visit. Thus, while many women had originally imagined their separations would be only temporary, the transnational relationship between mother and children can last years.
Horton explains that even though family separation has long been a reality for immigrants, scholarship has often ignored this lived experience as an independent factor of stress and trauma. Further, mental health analyses are frequently positioned at the individual level, and neglect the larger context of how such familial changes and separations are experienced and endured in the inter-subjective space between parents and children. Elisabeta described the aching in her chest when she would speak to her son on the phone each weekend. Later, when her son became seriously ill, Elisabeta felt an acute sense of failure – as both a mother unable to care for her ill son, and as a provider unable to pay for the operation he needed. Elisabeta was often unable to sleep at night, surrounded by thoughts of Carmelo’s words and tears. Horton explains Elisabeta’s vivid narrative expressed her embodied distress of being a transnational mother and the relational nature of the family’s suffering.
Gloria, another immigrant from El Salvador, left to find better economic opportunities after a series of devastating earthquakes in her home town. Gloria decided to leave her birthplace after it had become a space of death and scarcity, and the small business she and her husband had established had been destroyed. “There wasn’t enough food to give the kids. There was no way for me to keep them alive. And so I came here,” she said. For Gloria, and other women Horton interviewed, traumatic events reshaped familiar places and people, and triggered their decisions to migrate. Further trauma of the women having to explain their departures to their children were overwhelming.
The paradox of parenthood for these mothers is often having to choose between either financially supporting their children from a distance or physically being their caretakers. Horton explains that these parents have a profound sense of moral failing, perceiving that their inability to serve as “proper parents” is compounded by the difficulties of succeeding economically. Horton argues that placing these issues of “choice” and “decision making” against the backdrop of limited agency and “illegality” in the U.S. causes the parents’ immobility and powerlessness to reverberate through the space of a family stretched across international borders.
Children left behind in El Salvador often shoulder adult burdens, attempting to either prevent their mothers’ departure or requesting to join their mothers on the dangerous journey to the U.S. According to Horton, when the realization of the uncertainty in their separation becomes overwhelming, children respond to what they perceive as their mothers’ withdrawal of love with their own form of withdrawal. “My daughter then told me she had erased me from her heart, and that she didn’t love me anymore,” Gloria recounted. “El corazon de madre es un monton de piedras.” (“A mother’s heart is weighed down with a mountain of stones.”) This “weighing-down” is the burden Gloria had assumed in suffering the anger of her children while she only wished to protect them from hunger. Horton explains Gloria’s narrative demonstrates that suffering is relational, experienced through social connections and threats of uncertain future relationships. Horton says this transnational separation strains the bond between mother and child, as their distance is experienced both physically and emotionally.
Horton discusses strategies these transnational mothers undertake in order to attempt to substitute their parental presence. One strategy of sending gifts and luxury items, such as a color T.V. or special toys, is a way of feeling as if they are giving their children love and support. Yet this happiness from the fulfillment of financial support is temporary, and quickly overshadowed with sadness as children will often ask when they will be reunited again. Both the mothers and children know the gifts are double-edged, symbolizing the mothers’ love yet justifying their absence.
Horton concludes by calling for researchers to bridge the gap between subjective experiences of families living with separation and objective analyses of structure “illegality” and immigration policies. In hoping for more phenomenological accounts of transnational family life, Horton shows how sociopolitical inequality shapes individual experience and produces patterns of social suffering. She also places transnational mothers’ distress within a larger framework of social conditions that reproduce powerlessness and disadvantage. The sophistication of phenomenological approaches illustrates the ways that undocumented immigrants may experience embodied stress of strained family ties.
Due for release in March 2016 from Duke University Press is Megan Crowley-Matoka’s Domesticating Organ Transplant: Familial Sacrifice and National Aspiration in Mexico. The text explores the familial nature of kidney transplantation in Mexico, where the organs are donated between relatives rather than received by strangers. Crowley-Matoka also examines kidney transplant in Mexico beyond the family unit, assessing national pride in transplantation procedures performed at hospitals operated by the state. Through family and government, organ transplantation thus becomes an iconic procedure in Mexican society– both within the home and across the nation– that represents the curative promise of contemporary medicine. Crowley-Matoka’s ethnography highlights the relationships between embodied experience, domestic life, national identity, and clinical practice. This text will appeal widely to scholars who study biomedicine in the Americas, the connections between medicine and the state, and familial networks of caregiving.
About the author: Megan Crowley-Matoka is Assistant Professor of Medical Humanities and Bioethics at Northwestern University. You can access more details about her upcoming book here.
Culture, Medicine & Psychiatry, and the medical anthropological community at large, is committed to understanding the changing landscape of aging as both developed and developing countries experience demographic shifts, social change, and economic transformations that have impacted the way older adults receive care and treatment. Our December 1999 special issue addressed the anthropological complexity of family care dynamics, dementia, and global aging, and our journal continues to publish articles on this pressing theme in the field.
In recent news, there has been a flurry of articles that address the variety of new programs across the United States that strive to address this timely and critical issue in the field of medicine and care delivery. Mount Sinai Hospital in New York City, for example, has initiated a home hospitalization program for elderly patients. The program recognizes the desire of older adult patients to heal in their home environment, and visiting clinicians employed by the program are able to perform basic tests as well as deliver IV medications at the patient’s home in what is called a “mobile acute care” model.
This shift does, of course, benefit the hospital: it opens valuable bed space for other patients and allows staff to focus on the management of more serious cases. But it also has advantages for the patient, including reduced cost, the comfort of healing in the home, reduction in hospital-borne infections and symptoms of delirium in the unfamiliar hospital environment (common amongst older patients), and the ability for family members to be available at all times of the day to supplement care rather than being strictly permitted during visitation hours. A similar program for treating acute conditions in the elderly at home was instated in New Mexico, with promising results and improved patient outcomes.
Another piece in The Atlantic, however, outlines the difficulties of receiving extended at-home medical care for older adults with chronic illnesses like Parkinson’s. As children of the elderly generation continue to work longer, and in married families both spouses are employed, there is no one at home to deliver lasting care to older family members who have chronic rather than acute conditions. Visiting home health aides, who are equipped to assist with basic tasks such as helping older adults shower and get in and out of bed, are typically underpaid and do not service outlying suburban or rural areas in the United States where many older individuals now live. Although the majority of elderly individuals prefer to live at home and not enter an assisted care facility, without consistent home care delivery available, it becomes extraordinarily difficult to do so.
Other organizations are generating creative solutions to delivering at-home care assistance for the elderly, particularly those without debilitating health conditions but who nevertheless require other forms of assistance. As NPR reports, many older adults struggle with the physical tasks required to cook healthy meals, such as lifting heavy pots and preparing fresh ingredients. Some rely on microwaveable dinners, and do not get the nutrients they need to support their health. The company “Chefs for Seniors” has met this need in the Madison, Wisconsin area by sending professional chefs to older adults’ homes, where they cook a week’s worth of healthy meals for the resident. To ensure the plan is affordable for seniors, the company charges $15 for groceries and $30 per hour for the chef to prepare the meals: on average, this costs the customer $45 to $75 per week. The meals can also be personalized to the customer’s dietary preferences and needs.
While the United States faces numerous struggles to provide inclusive and accessible elderly care to an expanding older adult population, these smaller changes to the dynamics of caregiving—however flawed, as in the case of limited home health aides—demonstrates a broader recognition of this vital social and medical concern.
For another piece on elderly caregiving, be sure to check out this “From the Archive” blog post on dementia and family caregiving in urban India: https://culturemedicinepsychiatry.com/2014/11/19/from-the-archive-caregiving-and-dementia-in-urban-india/
This week, we are featuring a special guest blog written by Katharina Rynkiewich from Washington University in St. Louis. Today, she tells us about her experiences researching antibiotic use among infectious disease practitioners in Chicago, Illinois. If you would like to submit a guest blog entry on your research, please send a 500-700 word piece to social media editor Julia Balacko at firstname.lastname@example.org.
In the spring of 2013, I conducted research on hospital-based infectious disease specialists in Chicago. Although my participants had a lot to say about antibiotic resistance, I was most surprised at how they characterized and criticized fellow clinicians’ use of antibiotics in relation to resistant disease strains. In hospitals, they suggested, the regulation of antibiotics has changed drastically in the past half century. Some of the older infectious disease specialists I interviewed remembered a time when antibiotic overuse was rampant within the hospital setting. “Anyone could prescribe antibiotics,” my participants complained when describing that era. Clinicians and hospital officials at that time had little reason to expect that antibiotic resistance would become the expensive, lethal, and complicated problem that it is today.
In health care settings now, there is more regulation concerning the use of antibiotics. Clinicians are experiencing a lull in the production of antibiotics for infectious diseases, and practitioners must make do with the limited antibiotic supplies they have. Today, there are systematic hospital reviews of antibiotic use to monitor how often the drugs are used. However, most practitioners can still prescribe antibiotics with little oversight. Procedurally, the review of antibiotics in the hospital setting is an enormous task, and an adjustment of patient treatment plans may not occur until after the first few doses of an antibiotic have been given. There is room, therefore, for antibiotic-resistant diseases to generate as misuse and overuse of antibiotics still occurs.
One way to mitigate overuse employed was the notion of antibiotic stewardship: an idea that the infectious disease specialists I interviewed frequently emphasized. “Stewardship” here refers to the responsibility of certain clinicians to manage antibiotic prescription and usage. The infectious disease specialists expressed a desire to have more control over the distribution of antibiotics in hospital settings, leaving surgery to the surgeon and cancer to the oncologist. The infectious disease staff wished for this level of control over antibiotic use despite the fact that both surgeons and oncologists can prescribe antibiotics independently, meaning antibiotics are not managed by one clinical care specialty. When asked whether, in general, practitioners today realize the importance of antibiotic stewardship in light of the dangers of antibiotic resistant infections, one infectious disease practitioner joked, “Which doctors?” My data show that many infectious disease specialists note that their management of antibiotic resistance is quite a challenge because most other physicians within and outside of hospitals may readily prescribe them.
This issue is especially pressing because illnesses themselves are rarely treated with one biomedical intervention, or by one clinician. Few patients can be treated for one disease with one corresponding treatment, meaning that patients’ cases are managed with a variety of therapies and by a number of doctors. Patients can also have multiple conditions, again meaning that multiple types of practitioners can prescribe antibiotics for these patients at different points in their hospital stay. In these complex networks of caregiving, who gets the power to give antibiotics might not always be clear, or there might be tension when deciding who gets to limit the drug’s use. Indeed, when an infectious disease specialist is added to a patient’s chart, they are often added as a consult, meaning their advice may not be adhered to by the primary physician.
Certainly, we can expect that infectious disease specialists want professional autonomy over the management of antibiotic drugs, which means limiting and surveying the drug’s accessibility to other clinicians. But to do so, this would mean that other practitioners would have to agree to the control of part of their treatment plans by an outside party. This relationship of competing interests and access to antibiotics leads to disagreements and struggles of bureaucratic power in the hospital. As it stands, the future of antibiotic resistance rests in the hands of all practitioners who must negotiate who gets to prescribe, and who gets to control, the use of antibiotics.
About the Author: Katharina Rynkiewich
I am a PhD student in Anthropology at Washington University in St. Louis. My current research involves studies of infectious disease practitioners and treatment of infectious disease in hospital settings, and will focus on hospital policy regarding infection and epistemic differences among specialty groups of physicians. In 2013, I completed a masters program (MAPSS) at the University of Chicago, and research for this post was done in partial fulfillment of this masters.
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.
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.