What If No One Is There to Care? Dementia’s Narrative Demands

Immediately after I saw The Savages (Tamara Jenkins, 2007) with some friends, one asked: “Raise your hand if you’re worried about eldercare?” And yet, The Savages is hardly the most devastating entry in the dementia film genre.¹ As a dark comedy it evokes less despair than many other films depicting cognitive decline in old age. But it nonetheless hits on painful realities of the experience such as the miserable conditions of nursing homes and the pain of losing memory, bodily and affective control, and a sense of self. With its focus on children caring for their parents, it is one of the primary subgenres of the dementia film. Another primary subgenre is a focus on romantic love, as seen in films such as A Moment to Remember (John H. Lee, 2004), Away from Her (Sarah Polley, 2006), Amour (Michael Haneke, 2012), Supernova (Harry Macqueen, 2020), and—one of the rare Alzheimer comedies, until it takes a turn—Live Twice, Love Once (Maria Ripoll, 2020).

Over time, dementia films, which really came of age in the twenty-first century, shifted from focusing mostly on caregivers to exploring the experience of the person with cognitive decline—often but not always Alzheimer’s disease. Relationality between the caretaker and the sufferer is nonetheless so fundamental to the genre as to prompt the question: What kind of story is told about cognitive decline in old age when no one is there to care?

I was struck by this question when I watched Apple TV+’s limited series The Last Days of Ptolemy Grey (Walter Mosley, 2022), which was the first fictive film or television series I can recall about an African American suffering from Alzheimer’s disease. There have been representations of African Americans suffering from dementia in media before: the Golden Girls (NBC, 1985–92) episode “Old Friends” and the struggle of Peter Benton (Eriq LaSalle) to care for his aging mother (Beah Richards) in the first season of ER (NBC, 1994–2009) are some rare examples. But these series were about other things and were not defined by their dementia story lines.

The cognitive decline that often accompanies aging has been depicted in media for decades, but the number of films in which dementia is the central focus as opposed to an element of the plot really began to grow over the last two decades. Characters such as King Lear and Don Quixote likely suffered dementia, unnamed in the early modern period; in fact, modeling the metaphorical “madness” was once a common trope in depicting old age in film.² The “mad” senior citizen can be, as with Lear, a tyrant, or, in another subgenre, the source of horror.³ The structural horrors that afflict everyday life for African Americans might be one reason they are not the focus of many films about dementia, despite the fact that African Americans are twice as likely to develop dementia as white Americans. In the West, sufferers in films are disproportionately white and highly educated. Stories about care are thus less likely to be about the relation between patients and institutions than between people.

Part of the generic convention in the West is likely a classist supposition: as a college professor, I have noted that academics are rarely represented in media yet markedly overrepresented in the dementia genre. To some screenwriters it must seem that living a life of the mind makes cognitive decline so much worse. But it is horrible for everyone. In fact, academics’ better access to health care and quality facilities can create quite the buffer. Ptolemy Grey (Samuel L. Jackson) has some financial resources for retirement when the story begins, but his small and unkempt apartment in a poorer neighborhood and the lack of financial resources experienced by people in his family heighten his vulnerability.

The limited series does not necessarily highlight the health inequalities that make African Americans more at risk for dementia, but it does touch on the vulnerabilities that can make the experiences of the afflicted worse. Health inequalities and poverty have rarely been part of the dementia genre in the United States, likely because the rise of Alzheimer’s narratives in the 1980s as a public-health issue leaned toward an “It could happen to you” narrative directed toward the white middle class.

The increased attention to Alzheimer’s disease as a public-health issue and efforts to stop treating it as “senility” or a natural part of aging changed public discourse—a discursive shift that produced many representations of Alzheimer’s disease on television in the 1980s. I remember being a bit freaked out that something would happen to my grandmother after watching “Grandma Didn’t Wave Back,” an episode of Young People’s Specials (Nickelodeon, 1984–) about a young girl struggling to understand a grandparent’s “senility.” It was filmed in heavy-handed soft focus, perhaps to make you feel like you were crying even if no actual tears were produced.

The disease appeared in that episode of Golden Girls as well as in “very special episodes” of sitcoms like Family Ties (NBC, 1982–89) in which Elise’s Aunt Rosemary is diagnosed with Alzheimer’s. Joanne Woodward gives an award-winning performance in the made-for-TV movie Do You Remember Love (Jeff Bleckner, 1985) as a college professor diagnosed with Alzheimer’s. Robert Young starred in the social-issue movie-of-the-week twofer, Mercy or Murder? (Steve Gethers, 1987), which deals with both Alzheimer’s disease and euthanasia.

Alzheimer’s representations never went away, but the twenty-first century has seen a rapid rise, likely because of the impending global crisis of the disease. Some experts estimate that the number of people with Alzheimer’s worldwide will triple to 150 million by 2050.⁴ The beats of the Alzheimer’s story can be fairly predictable: diagnosis, the afflicted and their loved ones struggling with their cognitive decline, then some moment of coming to terms with the loss and/or death. The South Korean dementia film deserves its own column, and has been more generically creative: Poetry (Lee Chang-Dong, 2010), for example, focuses less on normative ideas of family care and ends with much more ambiguity. Films in the West have seen increased experimentation over the last two decades, exploring what kinds of stories can be told about the disease that might do more than hit narrative beats as tearjerkers and award bait, while keeping family relationships at the core. That shift has involved both engaging with how lost memory and cognitive decline can engage other genres and helping viewers think differently about care, relationality, and the end of life.

Playing with memory has been important to so many film genres, particularly film noir and neo-noir, because of how it highlights fallibility in memory, truth, and easy resolutions. Mysteries have thus been a common bedfellow of the Alzheimer’s narrative, as the logical gaps and holes in memory and knowledge can blend with such challenges in Alzheimer’s disease in films such as Mr. Holmes (Bill Condon, 2015), Elizabeth Is Missing (Aisling Walsh, 2019), and Cortex (Nicolas Bouhkreif, 2008).

As Sadie Wearing argues in her discussion of dementia in crime dramas, the Alzheimer’s narrative becomes more than a story of loss, for it explores how “partial memories can be enhanced in ways that encourage the development of relationality and communication, rather than assuming their complete demise.”⁵ In other words, there has been a move in both mysteries and other genres toward understanding the dementia narrative as something more or other than simply the end of a person’s life: personal growth and new knowledge can occur even in the midst of people forgetting parts of themselves. In a possibly utopian fashion, the narrative sometimes imagines new ways for its characters to understand themselves, a moment in their lives, or their relationships with others. That can result in sentimental closure so that people (both characters and viewers) can feel something other than despair; when presented well, as with Elizabeth Is Missing, the nonlinearity of memory can mean that the ostensibly satisfying closure can be undercut by the horribleness of disease. The protagonist solves a mystery from her past and finds her friend, but she forgets the resolution.

The most aesthetically inventive dementia films have undoubtedly been animated. Because people with late-stage dementia cannot tell their own story, any account told from the perspective of the person who has advanced in the disease is always speculative. With more freedom to creatively transform the body and shape impressionistic scenery, animation lends itself to helping the viewer imagine the unknowable—the experience of dementia once the suffer has lost the ability to construct a narrative about the experience. Haley Morris’s haunting and gorgeous stop-motion film Undone (2009) depicts both body and memory as a ball of twine unraveling, occasionally forming objects that have been retained in memory; but both body and thoughts are ultimately fragile. Irish animator Louise Bagnall’s Late Afternoon (2017) depicts an elderly woman flying through her memories as a child and younger adult in a colorful, children’s picture-book rendering of memory: sometimes remembering joy, then becoming distressed by confusion. The tearjerker reveal comes at the end when she remembers that her caregiver is actually her daughter, who is able to enjoy a brief moment of her mother’s lucidity.

In Mémorable (Bruce Collet, 2019), the texture of oil paint transforms a painter’s body as he declines, but in the end he experiences his wife as both a new encounter with a beautiful woman and as a hollow representation of herself, through brushstrokes that cannot entirely make her out. Franck Dion said he made Une tête disparaît (The Head Vanishes, 2016) in order to capture what can’t be seen in the brain of someone suffering from dementia. He was inspired by a story his mother had told him about his grandmother asking her to “fetch her head from under the sink.” Animation allowed him to literally depict that thought process.⁶ With the exception of Undone, all of these films provide some narrative closure and connection between the sufferer and the caregiver, which arguably reflects a narrative compulsion to find comfort in the tragic, particularly when the tragic is the everyday.

Finding some comfort in the tragic is the thrust of Ptolemy Grey, which producer and star Samuel L. Jackson describes as a “fairy tale” about Alzheimer’s disease.⁷ Ptolemy undergoes a procedure that allows him briefly to recover his memories, figure out who murdered his nephew, and leave the people he cares about financially secure. But initially, the series ventures toward a rare representation in Western depictions of dementia: the audience witnesses dementia without the loving caretaker as affective proxy. Normatively the caregiver witnesses the suffering and their struggles are also part of the story, while their sense of loss elevates the value of the person and helps the viewer take comfort in the fact that they will be cared for. When Ptolemy begins, his nephew is taking care of him—but is soon murdered. Ptolemy has an extended family, but another family member is stealing from him and no one is extending themselves to provide the care he needs. Enter Robyn, an orphan and friend of the family facing housing instability who becomes Grey’s chosen family.

The science-fiction aspect of the narrative—a brief return to memory—allows for this “fairy tale,” but arguably the sudden arrival of a caregiver is just as much a part of the fantasy as anything else. The contemporary dementia crisis is also a care crisis. Fewer people have partners, children, or extended families who can care for them. And the financial costs of care will make the last days of many people even worse than they should be without a better infrastructure. Films that represent relationships between people with dementia and institutions, if they get made, will likely be less interesting and undoubtedly less pleasurable. Even as Ptolemy Grey ends with Grey in a prison hospital (unrealistically white, clean, and well lit), it ends with him lost in better memories than some of the traumatic ones with which he has been afflicted throughout the series.

Jackson sees Ptolemy Grey as a series that shows that someone is still “worthy” despite being “rejected” by society. That is a fairy-tale ending for too many people. Hollywood knows that there are many people experiencing dementia who do not have people to care for them; they have been represented, but always at the margins of narratives. They are seen in media representations as the elderly relative that people visit and gratefully retreat from as they go on with the rest of their lives; the confused and sometimes angry person yelling on the street or subway as a main character walks by in the midst of their own story line; or the disturbed patient briefly observed in an emergency room.

Many depictions of dementia have been hailed as realistic—but realistic for whom? The conventional plot depends on a structure of care that will exist for very few people. To be sure, I don’t want to see a film about dementia where audiences are confronted with the suffering of those who are struggling not only with a disease, but with having no one to care for them and no social safety net to provide the care they need and deserve. Undone, as a short, gives the audience some of that. The nonrelational dementia film, or one in which the relationality is plagued by bureaucratic insufficiencies, would likely be excruciating as a feature-length film.

Instead, even in these devastating plots, audiences get some small comfort in that they often witness the tail end of a great love story or see the closeness or repair of estrangement in a normative family. It may seem counterintuitive, but these “realistic” dementia representations are actually comforting audiences, many of whom may be lucky enough to experience care and do not have to think about those who won’t. The last few seasons of the popular family melodrama This Is Us (2016–22) has depicted a woman with Alzheimer’s, but episodes lead audiences to cathartic cries after witnessing the care her husband and children have for her. Ptolemy has a caregiver sweep in to love him and takes care of her and his family with money that magically appears. Hollywood’s attempt at verisimilitude about the disease shies away from any present or future that does not depend on fantasies about having someone there to care for everyone who suffers from the disease. Audiences are often witnessing the best-case scenario, even when that seems too much to bear.