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.
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/
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.