Reframing Alzheimer’s through Comics: A Close Reading of Works by Walrath, Campbell, Farmer, and Roca

In her article “The Zero-Degree of Dementia: Thinking the Gap Between Subject and Substance,” Elana Commisso (2015) identifies a paradox when it comes to understanding dementia. On one hand, societal notions of dementia as “that ‘hideous debilitating condition’” remain entrenched (p. 377). On the other hand, the disease itself is characterized by “scientific indeterminacy” and “unpredictable expressions” (pp. 378, 397). In other words, dementia’s moment-to-moment expression depends on time of day, location, and circumstances. Likewise, the disease’s progression varies widely both within and between patients, as do the behavioral, cognitive, and clinical manifestations. Yet, perceptions of dementia and those who suffer from the disease remain constant. Inevitably, dementia conjures a person isolated from family, friends, society, and self, with loss of memory coinciding with loss of humanity. Indeed, the first questions most people ask me when I tell them that my father has dementia is: “Does he know who you are? Does he know who he is?”

Despite such static and engrained notions of the disease and those afflicted by it, dementia as a concept, according to Commisso (2015), resists definition. Even as medical science has pinned down different kinds of dementia, such as vascular dementia, dementia with Lewy bodies, and Alzheimer’s disease, Commisso observes that “[i]n many cases persons suffering from dementia have a mix of pathological characteristics and symptoms, and individual components of the pathologies corresponding to different forms of dementia are found to occur in brains of persons who aged ‘normally,’ i.e., individuals showing no symptoms of dementia” (p. 378). Thus, a medical diagnosis of dementia, even a specific type, does not mean that a predictable set of behaviors and experiences will result. People with significant evidence of brain pathology—namely, the plaques and tangles associated with Alzheimer’s disease—may or may not experience clear or constant signs of the disease. Likewise, people with only slight evidence of brain pathology might exhibit pronounced signs of the disease. So-called “brain resilience” and “cognitive reserve” might mitigate symptoms in some people under some circumstances, while in other circumstances, these mechanisms might prove less protective (Commisso, 2015, p. 398).

It is my argument that the comics medium, with its ability to show subjective and objective experience, in addition to imagined and real spaces, lends itself to reframing, and thus challenging misunderstandings of dementia. A form typically known as linear, and thus memory dependent, with meaning rendered by readers making connections and filling in the gaps between juxtaposed panels, comics can also offer non-linear (and thus non-memory-dependent) representations of experience and thus approximate how someone with dementia might apprehend the world around them. This article will look briefly at four comics representations of people living with Alzheimer’s disease, whether as the person with the disease or as a family member and/or caregiver. The first two—Dana Walrath’s Aliceheimer’s: Alzheimer’s Through the Looking Glass (2013) and Stuart Campbell’s interactive webcomic These Memories Won’t Last (2015)—experiment with the comics form in ways that offer readers access to the potential magic as well as to the particular terror of a world transformed by Alzheimer’s; the second two–Joyce Farmer’s Special Exits (2014) and Paco Roca’s Wrinkles (2016)—deploy conventionally-paneled comics paradoxically to underscore the complexity and multifaceted nature of Alzheimer’s. All four texts use the comics form to break down barriers between people living with and without the disease, and to challenge the concept of Alzheimer’s as fixed and one-dimensional.

Dana Walrath’s Aliceheimer’s: Alzheimer’s Through the Looking Glass (2013) interweaves one-page, Linda Barry-esque collage-like comics panels with one-page, all-text panels to represent Walrath’s own multimodal observations and experiences of her mother Alice’s life with Alzheimer’s disease. Visually and verbally referencing the fancifully unmoored and illogical world of Lewis Carroll’s Alice in Wonderland, Walrath encourages readers to approach the transformations brought about by Alzheimer’s through play and creativity rather than fear. As she asserts in her introduction to the work, “Reframing dementia as a different way of being, as a window into another reality, lets people living in that state be our teachers—useful, true humans who contribute to our collective good, instead of scary zombies” (p. 4). In addition, Walrath’s use of single, stand-alone panels connects readers to how people with Alzheimer’s-related memory loss process experience—that is, one moment or panel at a time. My father, for example, no longer finds satisfaction in reading, as he cannot retain the meaning of one paragraph long enough to carry that meaning forward into the next paragraph. Similarly, he cannot make sense of movies or television shows, since each new camera shot appears to him to be the first. That said, he can spend long periods of time studying and apprehending single images, and he can retain focus and awareness for as long as it takes him to recreate those images in his own drawings or paintings, even if, once he has completed a work and set it aside, he has no memory of having created it. In keeping with Walrath’s notion of reframing people with Alzheimer’s as our teachers, my father’s portraits, in particular, not only offer me insight into his nuanced way of seeing faces, but also continually teach me to observe more carefully. See Figures 1-2.

Figure 1: Pencil drawing (right) copied from original (left) by Joseph Pines.

Figure 2: Pencil drawing
copied from original (not shown) by Joseph Pines.

Another negative stereotype that Walrath (2013) challenges in relation to Alzheimer’s is the notion of disappearance. In losing the ability to keep in mind (that is, create a memory of) something that just happened or someone who was just here, people with Alzheimer’s live in a world of constantly disappearing experience. Nonetheless, it is the person with Alzheimer’s, rather than the world around that person, that is so often described as disappearing. Walrath begins Aliceheimer’s by offering readers a full-panel, hand-drawn portrait of her mother, see Figure 3. Here, Alice appears, as she does throughout the book, in garments custom-cut from pages of Carrol’s Wonderland. A charcoal mane of shimmering, thornlike fur sets off the whole image, suggesting that Alice lives in an electrified universe. When we turn the page, however, only Alice’s cloak remains. “Alice is disappearing,” the caption reads, thus engaging routine ways of conceiving of memory loss. “Soon there will be none” (p. 10), see Figure 4. Playfully exploring a typically disturbing notion of people with Alzheimer’s being simultaneously “there and not there,” Walrath offers a four-paneled, one-page comic suggestive of a children’s “Guess What Is Missing?” game. “She isn’t losing tangible parts,” the caption reads, “though she is disappearing” (p. 16) see Figure 5. Even as she plays visually with the loss of certain aspects of her mother’s identity to Alzheimer’s, Walrath notes that some personality traits do withstand the influence of the disease: “My mother [always] possessed a double dose of authority and confidence. She has kept this voice through Alzheimer’s” (p. 19). A career-long biology teacher, “[Alice] is as certain of her [Alzheimer’s influenced] hallucinations and the stories she uses to make sense of a fragmented world as she had been of the Krebs cycle, Mendelian genetics, or the Hardy-Weinberg theorem” (Walrath, 2013, p. 19). Thus, Walrath verbally and visually challenges the stereotype of Alzheimer’s as an unmitigated loss of self.

Figure 3: Dana Walrath’s mother. Dana Walrath, Aliceheimer’s (p. 8).	Figure 4: “Alice is Disappearing.” Dana Walrath, Aliceheimer’s (p. 10).
Figure 5: “She Isn’t Losing Tangible Parts Though She Is Disappearing.” Dana Walrath, Aliceheimer’s (p. 16).

Instead, Walrath focuses on her mother’s imaginative gains, specifically in relation to time and space. Most often, Walrath depicts Alice flying, thus shifting the discourse of Alzheimer’s from disappearance to lift-off. “She’s still here,” Walrath affirms. “She’s just losing her memory, the part that kept her grounded” (2013, p. 20), see Figure 6. And when Alice’s past infiltrates her present, as, for example, “[w]hen [she] was certain that her own mother, who died in 1954, had just been sitting on the sofa in the living room and talking with her,” Walrath greets her mother’s hallucination with reassurance and acceptance: “I can’t see her, but I’m sure you can,” she tells her. “You have special powers. You can see things that we can’t” (p. 19), see Figure 7. Ultimately, Walrath urges her readers “to find comfort with alternate realities. Develop a fondness for ritual and magic,” she suggests (p. 6). Most of all, her work exchanges a definition of Alzheimer’s as coincident with terror and alienation for one that encourages connection through creativity.

Figure 6: “She’s Still Here. She’s Just Losing Her Memory, The Part That Kept Her Grounded.” Dana Walrath, Aliceheimer’s (p. 20).	Figure 7: “She Didn’t Take Off, Though She Has Special Powers.” Dana Walrath, Aliceheimer’s (p. 18).

At first glance, Stuart Campbell’s 2015 Eisner-nominated interactive webcomic These Memories Do Not Last does the opposite of Walrath’s work, confirming stereotypes of Alzheimer’s as solely associated with unmitigated disorientation and disconnection. Campbell’s webcomic tells the story of Campbell’s grandfather, whose Alzheimer’s, mostly unnoticeable to others while his wife, Campbell’s grandmother, was alive, becomes increasingly noticeable once she dies. The work is deceptive in seeming to put the power to navigate the narrative in the reader’s hand. “Click here and scroll” comes the instruction at the start of the comic, and the reader prepares to advance what Scott McCloud referred to Reinventing Comics as the “infinite canvas” of the webpage. Immediately, however, operators of the comic will realize that neither the direction nor the pacing of the narrative is entirely in their hands. Scroll too quickly and you will miss the overlapping words and images; stop scrolling and the images on the screen begin to fade, see Figure 8. Seek to examine one of the borderless panels closely and realize that the screen itself is never wholly still. One can hover over but not freeze in place a particular drawing. Indeed, in Campbell’s comic, the reader, like Campbell’s grandfather, is never on stable ground.

Figure 8: “Click Here and Scroll.”
Stuart Campbell, These Memories Won’t Last.

Further enacting the subjective experience of someone with Alzheimer’s, the comic is designed such that scrolling backwards reveals only empty space, see Figures 9 and 10. As a result, the reader can no longer take for granted what the comics medium typically offers—namely, the chance to look back to an earlier panel to make sense of the current one or to locate what might have been missed on the first time through. Indeed, the deeper into the comic one gets, the more difficult it becomes to know if one is even scrolling in the right direction. Notably, when Campbell depicts one of his grandfather’s stories from the past, say from his grandfather’s military training days, the comic stops its downward progression, instead shifting to a horizontal layout, moving from left to right, with time, like his grandfather’s long-term memories, safely captured in bordered panels, see Figure 11. When the narrative returns to the present, Campbell’s grandfather returns to the increasing white space of the canvas, ultimately losing his footing entirely, see Figure 12. As disconcerting as the webcomic is, by putting the reader in the shoes of someone navigating a disappearing world, Campbell humanizes people with Alzheimer’s, deploying the comics form to encourage empathy, insight, and patience for those living with the disease.

In contrast to the uncertainty that characterizes Campbell’s webcomic, Joyce Farmer’s Special Exits: A Graphic Memoir (2014) offers the reader a precisely drawn world whose clear and predictable panel progressions would seem to imply that the reader and the people whose lives we follow in the memoir are on solid ground. In its classic grid layout, Farmer’s comic tells the story of Lars and Rachel Draper, both in their 80s and living in South Los Angeles, as their lives unravel steadily and inexorably, despite the attempts of their daughter Laura, Farmer’s stand-in, to intervene. Farmer’s drawings have the etched quality of wood cuts, with cross hatching and shading conjuring a textured and realistic world. Unlike Campbell’s comic, in which readers face a wavering canvas that makes close examination of the words and images difficult, in Special Exits, readers can study the details of each panel, taking notice, if they choose, of the bars on the windows of the house next door, the boxes of wool piled up in the garage, and the cans of chili beans and Vienna sausage that Rachel opens and heats for the dinner that she and Lars eat on TV trays in the living room while they watch breaking (and troubling) local news, see Figure 13. What is surprising in the narrative is just how much Farmer includes in each panel and yet how easy it is for most everyone involved, including the reader, to overlook what is happening.

Figure 13: Details of Daily Life for Lars and Rachel Draper.
Joyce Farmer, Special Exits (p.8).

With so much visual information on offer, readers find themselves cast simultaneously as witness, bystander, and participant in the lives deteriorating in front of them. As McCloud explains in his chapter on closure (“Blood in the Gutter”), in comics, readers deduce, imagine, and/or interpolate what happens in the gap between one panel and the next, becoming participants in the construction of the narrative (1993, p. 68). In addition to confronting and making sense of the myriad aspects of Lars’ and Rachel’s unspooling lives by studying the specifics of the juxtaposed panels, Farmer’s readers must also engage imaginatively in filling in the gaps between the large leaps in time embedded in the narrative. Often, just at a moment of crisis, the scene will end with the next panel directing the reader, via text box, to a moment in the future. For example, in the first chapter of the book, in what is arguably the memoir’s inciting incident, Rachel falls in the bathtub and remains trapped there until her cries alarm the cat enough to get the attention of the hearing-impaired Lars. The scene ends, not in an ambulance or an ER or an X-ray room, but rather with a panel showing Rachel immobilized on the couch and Lars offering her aspirin and Dr. Pepper for relief. We look with trepidation toward the next panel only to learn that “Six months pass. . .” (Farmer, 2014, p. 15). In the ensuing scene, no mention is made of Rachel’s fall, though its impact can be seen on Lars, who appears exhausted, overwhelmed, and unshowered. As for Rachel, she is neatly dressed, hair combed. On first reading, one might miss the medicine bottles silently arrayed on the coffee table and not think to consider why it is Lars and not Rachel who rises (as she had in earlier scenes) to feed the hungry cat or to get Laura, who has come to visit, a cup of coffee. When Laura asks pointed questions about his health, Lars is first prickly, then dismissive: “I’m all right. I just get tired” (p. 16). Given the obvious strain on Lars, the reader can only imagine the difficulties of the past six months. Even as the reader works to absorb the extremity of the situation, another text box moves the narrative forward: “Months go by. . .” (p. 17), see Figure 14. Farmer’s work thus puts the reader in the uncomfortable predicament of witnessing and even oddly participating (through closure) in an increasingly unmanageable situation, see Figure 15. When, many scenes later, Laura confronts Lars about how bad things have gotten, Lars seems to speak for the hapless comics reader who has faced the Drapers’ harrowing circumstances one 2x4 inch panel at a time when he remarks: “Well, things get worse in such small increments that you can get used to anything” (p. 85) see Figure 16.

Figure 14: “Months Go By.” Joyce Farmer, Special Exits (p. 17).

Figure 15: Life at Home Becomes Increasingly Unmanageable.
Joyce Farmer, Special Exits (p. 59).

Figure 16: “Things Get Worse in Such Small Increments.”
Joyce Farmer, Special Exits (p. 85).

Little by little, despite heroic efforts by her husband to care for her, Rachel loses physical autonomy, mental acuity, and finally her self-awareness. While the words “Alzheimer’s” or “dementia” are not used specifically, Rachel’s progressive inability to orient herself in time or space, and, as Lars notes, to know “if she is wet or dry” (Farmer, 2014, p. 85) suggest the neurodegeneration associated with the disease. That said, Special Exits underscores not only the complexity of elder care, but also the inextricable connections among physical, mental, and cognitive health. Despite what psychologist Stephen G. Post refers to as today’s “‘hypercognitive’ culture and society” (Post, 2003, p. 246), in which the strong tendency is to define “persons” in relation only to the mind, Special Exits (2014) challenges this view in favor of a notion of what dementia care researchers like Pia C. Kontos call “embodied personhood,” in which personal identity relies on the body as well as the mind (2005, para. 6 ). By the time Laura succeeds in having her stepmother medically evaluated, Rachel is, as Laura pointedly informs the doctor, “not all there, mentally” (Farmer, 2014, p. 135). Understood in popular culture to be a disease of the brain, dementia, as Farmer’s comics memoir strongly suggests through words and, especially, images, in fact cannot be disassociated from the body.

Roca’s graphic novel Wrinkles (2016) similarly challenges a misconception of Alzheimer’s as a disease singularly of cognition. As Wrinkles opens, the main character, Emilio, faces his adult son’s anger and impatience at his father’s increasing confusion. Almost immediately, the novel shows Emilio being moved into a nursing home with visual but not verbal reference made to Emilio’s feelings of displacement, fear, and alienation. Shown the ropes by his roommate Miguel, Emilio learns that the nursing home sorts residents on the basis of their exhibited cognitive abilities into particular groups and spaces. As Miguel explains, “the home has two floors. The healthy ones—the competent—live on our floor. The incompetent live on the second floor” (p. 14), see Figure 17. When nursing home administrators deem residents no longer competent enough to remain on the first floor, it is the empty seat at the dining room table (like a reverse game of musical chairs) that lets the others know what has happened.

Figure 17: “The Incompetent Live on the Second Floor,” Paco Roca, Wrinkles (p. 14).

In its frightening representation of the residents living on the second floor, Wrinkles underscores the impact of physical separation and stigmatization on people with memory losses. Aware that his own Alzheimer’s diagnosis, revealed to him by the nursing home director, will lead eventually to his being moved to the upstairs unit, Emilio resolves to prepare himself for the worst. When he and Miguel peek, with trepidation, around the door onto the second floor, they confront an onslaught of just the kind of “scary zombies” that Walrath (2013) referenced in Aliceheimer’s. The decision to segregate people based on cognition recalls Stephen Post’s critique of a culture and society in which “nothing is as fearful as [Alzheimer’s Disease] because it violates the spirit (geist) of self-control, independence, economic productivity, and cognitive enhancement that defines our dominant image of human fulfillment” (2003, p. 245). As Bomilcar et al argue in “The Seven Selves of Dementia,” the inability of “relatives and caregivers. . . to see beyond the condition as a diagnosis and disease state. . . . may lead to caring practices that diminish personhood in dementia” (2021 p. 2). Relegating people with memory loss to a particular floor not only “disempower[s] and stigmatize[s] [them] but also undermine[s] them, potentially causing excess disability” (Bomilcar et al., 2021 p. 2). In other words, placement in this unit can impede an individual’s ability and potential to interact, to create, and to connect.

The dehumanization that Emilio and Miguel witness on the second floor sends them breathlessly back down the stairs. “I’m not going to end up there, Miguel,” Emilio vows to his friend. “I’ll do everything I can to not end up there! Will you help me?” (Roca, 2016, p. 55). Naturally focusing entirely on bolstering cognition rather than on engaging in creative and embodied practices such as drawing, painting, music, or dance, Miguel takes Emilio straight to the library. “[I]ntellectual stimulation will delay Alzheimer’s,” he assures Emilio. “So every day we’ll read for a few hours” (p. 56). Not surprisingly, Emilio’s attempt to maintain first-floor status becomes a failed exercise in hiding his increasingly obvious memory lapses. The next empty seat at the dinner table is his.

What is clear from the words and pictures in Wrinkles is that strong personal relationships can momentarily pierce the fog of Alzheimer’s-related memory loss. As Miguel glibly, if quietly, remarks to Emilio, Modesto, a longtime resident on the brink of relocation to the second floor, “doesn’t even know where he is” (Roca, 2016, p. 17). Yet, as a poignant scene at dinner reveals, Alzheimer’s does not prevent Modesto’s wife, Dolores, from successfully returning Modesto to himself following her whispered reference to their courtship (p. 62). Likewise, when Miguel overcomes his fear of the second floor and finally visits Emilio, Emilio appears to emerge from his own self-isolation. While at first Emilio stares blankly at Miguel, after a moment, Miguel’s face comes into focus, and Emilio smiles to find himself with his friend, see Figure 18. Friendship, as Roca’s graphic work suggests, can counter the dehumanizing and isolating consequences of nursing home care, reinstating personhood, if only temporarily.

Figure 18: Reconnecting with Emilio. Paco Roca, Wrinkles (p. 89).

By representing the experience of dementia through the lens of comics, Walrath, Campbell, Farmer, and Roca use words and images to challenge negative stereotypes associated with the disease. In Aliceheimer’s, Walrath (2013) invites readers to engage playfully in an Alzheimer’s inflected universe, to find fun, creativity, and connection in her mother’s illogical and altered reality. In These Memories Do Not Last, Campbell (2015) invites readers to enter his grandfather’s increasingly unbounded and unsteady universe. By putting readers in the shoes of a person with Alzheimer’s, Campbell builds empathy and understanding, combatting the isolation and dehumanization so often associated with people living with the disease. Farmer’s Special Exits (2014) visually assaults readers with the moment-by-moment challenges of living independently in very old age. The work upends expectations both about Alzheimer’s as a purely cognitive condition and about the desirability of aging in place. Ultimately, the comic draws connections between physical, psychological, and cognitive decline. Finally, Roca’s Wrinkles (2016) underscores the devastating impact of physical isolation on personhood as well as the power of relationships to break through the fog of memory loss. All four works use the comics form to encourage nuanced and multidimensional conceptions of the disease.

References

Bomilcar, I., Bertrand, E., Morris, R. G., & Mograbi, D. C. (2021). The seven selves of dementia. Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.646050

Campbell, S. (2015). These memories won’t last. MIT Docubase. https://docubase.mit.edu/project/these-memories-wont-last/

Commisso, E. (2015). The zero-degree of dementia. Thinking the gap between subject and substance. In A. Swinnen & M. Schweda (Eds.), Popularizing dementia: Public expressions and representations of forgetfulness (pp. 377–402). transcript Verlag. https://doi.org/10.14361/9783839427101-018

Farmer, J. (2014). Special exits: A graphic memoir. Fantagraphics Books.

Kontos, P. C. (2005). Embodied selfhood in Alzheimer’s disease: Rethinking person-centred care. Dementia, 4(4), 553–570. https://doi.org/10.1177/1471301205058311

Kontos, P., Miller, K., & Kontos, A. P. (2017). Relational citizenship: Supporting embodied selfhood and relationality in dementia care. Sociology of Health & Illness, 39(2), 182–198. https://doi.org/10.1111/1467-9566.12453

McCloud, S. (1994). Understanding comics: The invisible art. Harper Perennial.

McCloud, S. (2000). Reinventing comics: How imagination and technology are revolutionizing an art form. Paradox Press.

Post, S. G. (2000). The concept of Alzheimer’s disease in a hypercognitive society. In J. F. Ballenger et al. (Eds.), Concepts of Alzheimer disease: Biological, clinical, and cultural perspectives (pp. 245-256). Johns Hopkins University Press. https://doi.org/10.1353/book.20635

Roca, P. (2016). Wrinkles. Fantagraphics Books.

Swinnen, A., & Schweda, M. (Eds.). (2015). Popularizing dementia: Public expressions and representations of forgetfulness. transcript Verlag. https://doi.org/10.14361/9783839427101

Walrath, D. (2013). Aliceheimer’s: Alzheimer’s through the looking glass. Penn State University Press.