Resisting Reduction: The Fluid Boundaries of Non-Communicable Disease
One day, around his fiftieth birthday, my father stopped talking. It wasn’t a complete silence, but seemingly overnight he struggled voicing more than a few words at a time. A couple weeks later, he quit the career he’d held for twenty years and began sleeping most of the day. One day he lost his way to the bathroom. Another, he lost the kitchen. He lost the ability to sleep at night. How to use a fork. He lost how to empty the dishwasher and cut the ends off asparagus and tell which door is the refrigerator. He lost how to put together puzzles and form cohesive sentences and tell you how many kids he has. If you sent him to the grocery store for toilet paper and bread he came back with unripe mangoes and brown sugar.
After a couple years, he started seeing people who weren’t there. Murderers he would call them. Bad men over there. He would stare, clench his fists, and start yelling at the crown molding or at a bush outside the window. He mistook my youngest brother for one such person, which is how my brother ended up shoved in the mud one day while they were walking in the park. After four neurologists, multiple psychiatrists, psychologists, MRIs, PET scans, a CT scan, an EEG, and multiple rounds of medications, we finally got a diagnosis. Six years after he first stopped talking the lumbar puncture came back suggesting younger-onset Alzheimer’s—likely developing when he was in his 40s. By then, our conversations began involving discussions of towering medical bills, bankruptcy, and eviction. Without insurance and with one parent providing full time care to the other parent so nobody was working, there wasn’t much left.
My father did not die for nearly eight years.
The first time my youngest brother told me that he too had Alzheimer’s, he was fifteen years old. We were on the phone—there were thousands of miles spread between the two of us, but the connection was a good one. When he spoke those words, I was surprised just how unsurprising that statement was. How easy the words I have Alzheimer’s sounded in his fifteen-year-old tenor. Perhaps it was because I had heard those same words uttered by my mother—still in her forties—just a week before. My mind is slipping, she had said. My youngest brother was losing things. Just like Dad. He couldn't remember what was said in school; he was forgetting how to spell, how to recall basic information. I’m serious, he told me. My mother had said the same nearly verbatim. I had brushed it off at the time, I echoed the doctors, telling them that it was just stress, that of course a fifteen-year-old did not have Alzheimer’s disease. Which is true, of course. The disease that ultimately killed my father was not diagnostically what my brother was suffering from. And yet, just a couple years after my father’s death, I’m still stuck on the words my brother uttered to me that day, the certainty in his voice. I’m less inclined to brush it off now. In fact, it is this moment, this phone call with my brother so many years ago that is the driving force behind this essay.
Tucked near the middle of Joichi Ito’s manifesto, “Resisting Reduction: Designing our Complex Future with Machines” he writes: “Today, it is much more obvious that most of our problems—climate change, poverty, obesity and chronic disease or modern terrorism—cannot be solved simply with more resources and greater control”.
“I place a fork in her right hand and guide it to the poached egg in the deep bowl” writes Arthur Kleinman, “I have already cut up the toast, so that I can help her spear pieces of bread and soak up the yolk. She can’t find the teacup in front of her, so I move her hand next to its handle”.
Kleinman’s words are important to pay attention to here, not only because he’s a physician and medical anthropologist, but because his narrative eloquently articulates some of the most enduring and pervasive tensions inherent in the life of a caregiver for someone with dementia. He locates his world within hers, within the navigation of silverware and amplification of his desperation, he too inhabits a space touched by the disease. “She is happy much of the time,” he writes of his wife. “It is me, the caregiver, who, more often, is sad and despairing”.
This process by which Kleinman’s world is “saturated” by the disease of his wife is what is referred to in the literature as the caregiver burden—a “multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience’’.
This barrage of health risks has led some researchers to note that “it might be useful to start viewing caregiving as, in itself, a health hazard”.
While Alzheimer’s is not a communicable disease in the traditional sense of disease vectors and infection, the cascading health effects of Alzheimer’s upon those surrounding that individual—suggests that simply framing this problem as a singular disease of a malfunctioning brain might be misleading. Using the specific language of “social networks” and “contagion effects,” researchers Wittenberg and Prosser contextualize the “well-documented burden of caregiving” in the same frame as obesity and smoking which, they note, have effects that extend to family members and others.
Perhaps one of the better demonstrations of the spillover effects of these intertwining illnesses is in the cognitive and psychological effects of caregiving. In one study detailing effects of caregiving on spouse’s cognition, researchers found that “spousal caregivers of dementia patients have on average lower levels of cognitive functioning than age, sex, and education matched controls. Caregivers performed significantly worse on measures of general cognitive functioning, speed of information processing and verbal memory”.
“A name that is a long-winded non-definition, and that only tells us what this group of diseases is not, is not befitting of a group of diseases that now constitutes the world’s largest killer” writes Allen and Feigl in a 2017 Lancet article discussing the utility of framing and re-framing non-communicable disease labels.
The issue here, is one of framing. “The disproportionately low levels of national and international attention paid to NCDs in terms of action plans, funding, and global institutions might be partly attributable to the framing of these conditions”.
Beyond linguistic semantics, they also argue that the medicalized distinctions themselves need rethinking. This well-entrenched medical binary between communicable and non-communicable is a distinction that, in light of modern medical anthropological discussions, might be very tenuous. Noting that this division between communicable and non-communicable is anything but firm they argue: “evidence is mounting that some NCDs are partly or wholly communicable”.
Despite their clear and persuasive language, Allen and Feigl spend little time fleshing out what they mean by saying that “evidence is mounting that some NCDs are partly or wholly communicable”.
The shift away from framing obesity as a failure of individual willpower is an important shift in medical anthropology. Though there is a debate as to whether or not obesity is a disease in the first place, Annemarie Jutel specifically addresses this question, noting that where being overweight once was merely a descriptor of corpulence, it has undergone the “transition to a disease entity”.
The article, “The global obesity pandemic: shaped by global drivers and local environments” talks about the concept of an “obesogenic environment”.
Research into obesogenic environments and the impact of socioeconomic status upon obesity is important in this discussion as it relates to non-communicable diseases, including AD, because although this research by no means shows that this is a communicable disease in the traditional sense of disease vectors, it does complicate this boundary between communicable and non-communicable by showing that obesity is not just an individual problem, but an interconnected and interlocking web of both individual and social factors. Obesity is not solely the result of poor individual choice, it’s a multi-pronged disease: political, socioeconomic, and personal at the same time.
“There is an ongoing and largely unhelpful emphasis on individual healthy choices” that “hamper a shift towards more effective and equitable population-level policies such as tighter tobacco control and measures to address obesogenic environments”.
Further refuting the idea of obesity as an individualized disease, researchers have linked the spread of obesity through social networks. One study considered the extent to which weight gain in one person was associated with weight gain in friends, siblings, and spouses. Framed with the aim of looking in to networks and connections as a means of studying the extent to which obesity is “spread through social ties,” their findings suggest that “obesity may spread in social networks in a quantifiable and discernable pattern that depends on the nature of social ties”.
These are just a few examples of the avenues in which current obesity research is finding ways to contextualize obesity and extend the etiology to social, political, and interpersonal spaces. Obesity is a complex web of relationships, and recent research suggests that trying to fit obesity into a framework that doesn’t account for this nuance and complexity is problematic.
Which brings us back to Allen and Feigl’s call to question the NCD category. Much of the strength of their article lies in its willingness to push against these seemingly ingrained medicalized distinctions such as communicable vs. non-communicable or individual vs. societal. And although there is not a specific mention of Alzheimer’s disease or caregiving in their article, I contend that just as obesity resists these reductionary frameworks of singular disease, so does caregiving. Alzheimer’s is a disease of many interlocking problems. Like obesity, it’s a disease at the nexus of political, social, economic and interpersonal issues especially when it comes to the well-documented health risks of the caregivers, yet often the diagnosis is a highly individualized one, emphasizing the tangles and plaques of a single malfunctioning brain. Increasingly, however, the vocabulary of caregiving literature is beginning to push against the individuality. Like Allen and Feigl, I argue that the traditional framing of NCDs is problematic in the ways it decontextualizes and individualizes diseases like Alzheimer’s. Further, given the literature of caregiving, I want to suggest that aspects of Alzheimer’s disease resist the binary that divides the communicable from the non-communicable disease label in the way that the diagnosis affects not only the diseased brain in question, but the health of the caregivers and the surrounding family, too. How does Alzheimer’s stay within the non-communicable disease boundary when the literature of caregiving uses phrases like “contagion effect” and “spillover” to describe the health effects of caregiving?
To be clear: the argument here is not that obesity or Alzheimer’s is an infectious disease or that it presents the kinds of problems that a disease like Ebola can engender. Insofar as I push against these communicable vs non-communicable labels, it is not to equate the two, as the challenges of TB are indeed very different than Alzheimer’s. This debate is not about the utility in continuing or not continuing to use “infectious” as a way of describing particular kinds of diseases. This debate is about whether or not the reductionist language of “non-communicability,” with the built-in binary that implies a hard line between communicability and non, is the problem. I want to suggest that the language of infection has use, but the binary might not. Regardless, NCD is a category that is not only problematic, but might be anathema to the goals of attending to the interactional and interpersonal nature of certain diseases like Alzheimer’s and obesity.
Allen and Feigl note that they are not the first to call for a re-evaluation of the non-communicable and infectious disease binary
This discussion is more than just semantics. Given the burden of caregiving and the ways in which the disease infiltrates the social connections networks surrounding the person with the diseased brain, the categorizations of non-communicability fall short. And the failure of the framework is not just a minor issue of semantics, because the framework itself is failing to account for the literature showing that to be a caregiver is to also to be at risk.
Stanley Ulijaszek uses images of water and fluidity as a guiding visualization articulating the complexities of obesity. “There are leaks and flows between bodies and the environments that surround them, as there are between disciplines that study obesity” he writes.
These images of water, fluidity, permeating boundaries, and complexity, are images that can not only frame obesity, but I argue, Alzheimer’s as well. This notion of “spillover” has already led research in this direction—recognizing that Alzheimer’s occurs in a context, that to conceptualize the health effects of those surrounding the disease, one must consider a web of interconnected factors of social, economic, relational, as well as biomedical. And that, even then, the boundaries between those are fluid, “leaky.” Margaret Lock recognizes the need to broaden the framework of Alzheimer’s beyond the biomedical. “To date, relatively few researchers have paid attention to the relationship among AD incidence and poverty, social inequalities, and family histories, but this situation is beginning to change, spurred on by findings in epigenetics”.
The importance of contextualizing Alzheimer’s patients and recognizing that their health is linked to the caregivers is clear in Collins and Swartz’s 2011 Caregiving Care article. In their piece, Collins and Swartz lay out the health risks of the caregiver burden and talk about the potential for caregiving “interventions,” which are individualized assessments where a physician simultaneously treats the caregiver as well as the patient with Alzheimer’s.
It’s not a tidy argument. The arc of this research is rooted in leaky boundaries and invocations of complexity—but that is the point. Even now, the driving force behind this essay boils down to the day my fifteen-year-old brother told me he, too, had Alzheimer’s, which is, of course, not strictly true from the biomedical lens of disease. However, if Alzheimer’s can instead be seen as a web of interlocking and interpersonal illnesses, then perhaps this can account for a fifteen-year old worried that he too, has caught a disease he knows is “uncatchable.” I draw similarities between obesity and Alzheimer’s caregiving not because the research is necessarily similar, but because Alzheimer’s, like obesity, requires understanding “how things influence one another within a whole”.
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