Thesis reveals nuances when mapping patients’ relationships and daily lives
Diagnosing Alzheimer's disease is not simple. It depends on clinical examinations carried out by doctors, analysis of the patient's history and an in-depth assessment of their cognitive functions. It is common for the doctor to pay attention to the patient's daily life and generally take into account whether the person is able to dress, eat, bathe, etc. The loss of memory, cognition and language is pointed out as part of a process of “dissolution of the self”, expression used by neurologists. In other words, the person no longer recognizes themselves. But there is power in this, despite it seeming scary, according to Daniela Feriani, author of the doctoral thesis “Between blows and hauntings: aesthetics and experience in Alzheimer's disease”. “There are other possibilities of being a person”, she adds.
The research was defended in the area of social anthropology at the Institute of Philosophy and Human Sciences (IFCH) at Unicamp, with guidance from professor Guita Grin Debert. The objective of the thesis was to map a field of relationships around Alzheimer's disease. “I followed the threads that wove the disease into a tangle of subjects, fields, images, both in the composition of the diagnosis and in the experience and aesthetics”, details Daniela.
To develop the work, she collected a series of images, metaphors about the disease, photo essays, videos of awareness campaigns, blogs written by people suffering from dementia and works of art made by an artist diagnosed with Alzheimer's. She also observed the gestures and scenes involving patients and family members she accompanied in consultations in neurology and geriatric psychiatry at a university hospital. Furthermore, the researcher participated in meetings of the Brazilian Alzheimer's Association (ABRAz).
Some families were chosen for home visits. Without a recorder or paper to take notes, “just willing to watch and listen”, Daniela spent afternoons in the homes of people with Alzheimer's and observed everyday scenes. “During one of the visits, I saw a lady distressed because she believed that the monkey from the soap opera would invade the room”. This type of reaction is common in the daily lives of those who live with the disease and is part of what the researcher considers a “haunted daily life”, when the most banal domestic activities can become frightening. “Trying to change the television channel with flip-flops, wearing a shirt as if it were pants, not being able to turn on the washing machine, using detergent to cook, wearing clothes to take a shower, inviting the image in the mirror to go for a walk are all part of this daily life. ”, highlights the researcher.
Another possible world
Haunted, scary, but also possible and powerful, as the author of the research puts it. The daily lives of patients and caregivers of people with Alzheimer's would be like another world, with other references. “I show what another world is like, the upside-down world of dementia, in which memory and hallucination, terror and humor, dementia and lucidity, routine and creativity overlap”, she says.
According to the researcher, although verbal language may be lost, there are other forms of expression. “Each person’s face says a lot, and their gestures also speak. I found a large number of faces in photographs and paintings about the disease, as if they were telling something that can no longer be told in words. If neurosciences chose the brain as the concept-image of the notion of person, the counter-narrative of Alzheimer's disease chose the face, with its expressions and distortions”, she emphasizes.
The thesis also seeks to show how the disease shakes medical and philosophical paradigms. The author sought dialogues with shamanism and literature to think about other notions of person, illness and reality. “Shamanism and literature helped me think about becoming another, delirium, the mirror as metamorphosis. However, if there they make up a person and way of knowing, in the clinic they are pathological symptoms”.
Daniela states that the disease can be a “differentiated subjectivity”, a way of life, another possible world, and that the caregiver can try to share this world. “Many people with Alzheimer's disease want to go back to their childhood home, pack their bags, talk to their parents who have died. Instead of denying it, the recommendation from doctors and ABRAz is to be creative, change the focus, or enter their world. ”
In mapping the field of relationships surrounding Alzheimer's disease, Daniela sought to show how plural and “nebulous” it is. “Between the epidemic and uncertainty, Alzheimer's disease reveals an epistemological and ontological obscurity, it appears as a strangeness, a 'trouble'. In the midst of the fog, I saw the blurs, but also the fireflies: a shining eye, a hand holding the blanket, the drops of water after a shower, the coffee grounds in the cup, a joke, a dance, a complaint, a desire.”
