Alzheimer’s, Age Panic, Neuroscience: Media Discourses of Dementia and Care
Summary and Keywords
Age discrimination, long habitual internationally, is now developing into age panic as longevity becomes the norm. People are increasingly living through their 80s and 90s, threatening social systems—not just health care, but also education, transportation, and economics. A by-product of longevity is Alzheimer’s disease (AD) or dementia more broadly, and this the focus of our essay. Five million people in the United States (the greater part women) currently have Alzheimer’s or dementia, and the figure is projected to grow exponentially as the baby boom generation ages. Fear, and other powerful affects, are generated in the aging Eurocentric public through overwhelmingly negative images of dementia. Prominent circulating AD images portray white, middle-class women and men; they are typically cared for by heroic family members, with the occasional, backgrounded appearances of racialized care workers. Such discourses betray a noticeable ageism, together with gendering, racialization, and medicalization of the illness. The reification of neuroscience studies of AD perpetuates understanding of AD subjects as having lost their subjectivity and as a burden to health-care systems. As the politics of care becomes ever more fraught with the increase in numbers of diagnosed elderly people, media discourses take on particular significance. Largely negative, images have obvious implications for long-term care in discourse and in practice. Since improving care depends on how the AD subject is visualized and conceptualized, critical analyses of works dealing with age panic, and especially how it arises in relation to cultural understandings of dementia, are essential. Critiques by humanists and psychologists may contribute to improving care of AD subjects, both in long-term facilities and “in place.” Improved care can contribute to transforming the popular understanding of a dementia crisis, thus addressing the central impetus of age panic. Meanwhile, new films, fiction, memoirs, and graphic arts projects are powerful complements to psychological studies aimed at developing new ways of seeing AD subjects.
People with dementia offer all of us their vision of the world in images, movements, songs, stories, and phrases. It is a vision both complex and contradictory . . . that can teach us about resiliency and the human drive for meaning and recognition regardless of disability. It is a vision that can compel us to reexamine our care practices . . .
—Anne Basting, Forget Memory (p. 69)
The fear of dementia, and what it could mean both for the liberal individual self and for overtaxed social systems, propels what we call a discourse of age panic. While dementia is not necessarily part of growing older and not only associated with older adults, it has come to figuratively stand for population aging; so what might seem to be dementia panic is closely affiliated with a broader notion of population aging. Five million people in the United States (the greater part women) currently have Alzheimer’s disease (AD) or dementia more broadly, and the figure is projected to grow exponentially as the baby boom generation ages. Fear, and other powerful affects, are generated in the aging Eurocentric public through overwhelmingly negative images and stories of dementia. The anxiety fueling discourses arises from the Western obsession with the autonomous individual and with fantasies of total control of one’s life. AD is figured as a “Gothic horror tale,” less because of the illness itself than because of the norms of independence. Common representations offer up dementia as the wrong way to grow old, presumably suggesting that a right way is possible. Our thinking is provoked by the ways in which this creates what Stuart Hall et al. (1978) calls “moral panic,” in that it motivates a general population to police their behavior in anxious attempts to prevent what is often depicted as the inevitable result of the shamefully and misleadingly labeled “silver tsunami”; Fitbits and brain gyms offer two popular examples of the commodified actions geared to taking individual responsibility for the prevention of AD. While a majority of older adults will not have dementia, the population bubble is frequently depicted as consisting of needy older seniors about to swamp younger adults who wait hopelessly on the shore, uneasy about the apparent literal and figurative costs they will unfairly incur. The quickest way to portray a needy senior in popular culture is through a character with dementia, and AD is the most commonly known cause of dementia.
The unbalanced misunderstanding of current demography also draws our attention to how prominent circulating AD images portray white, middle-class women and men, typically cared for by heroic family members with the occasional, backgrounded, appearance of racialized care workers. Such discourses of AD betray a noticeable ageism, together with gendering, racialization, and medicalization of the illness. The reification of neuroscience studies of AD perpetuates understandings of people with dementia as having lost their “self” or subjectivity and as burdens to health-care systems. Such media discourses and representations have implications for long-term care in discourse and practice. Since improving care depends on how the AD subject is conceptualized, both humanists and psychologists may contribute to improving such care in institutions and “in place” through developing new conceptions of AD subjects. We take into account not only anxiety about sufficient availability of care but many other psychological, sociological, and political concerns that contribute to cultural panic about an aging demographic.
In the first section of this article, through analyses of media discourses and representations of dementia, we show how such discourses and images are not only socially constructed but gendered as well. We analyze the politics underlying discourses as the number of diagnosed elderly people increases. In the second section we study images of care, including quality and costs of care; theories about best kinds of environments for people with memory loss; practices of care in relation to gender and race; architecture of facilities, and more. Since other discourses of AD are possible, especially if memory is “forgotten,” as Anne Davis Basting (2009) provocatively proposes, in the third section we explore ways in which alternative research and practices (some recorded on film and described in graphic memoirs, others found in arts-based AD projects) result in creative, diverse, promising practices for caring for people with dementia. Such practices also offer intriguing ways of thinking newly about memory loss and, by extension, the self, changing the conversation from the assiduous yet fruitless prevention of aging to an acceptance of changes that come with aging, especially the potential to live a meaningful life with dementia.
To delve into meaning in late life, we draw on humanities approaches to aging. Interest in AD on the part of humanists, artists, and psychologists emerged in the context of long-ongoing concerns about age discrimination in interdisciplinary age studies. This field has steadily advanced since the mid-1980s in the humanities and cultural studies and (in the case of psychologists) even earlier in gerontology. Work in humanities age studies, pioneered by scholars such as Kathleen Woodward (1999), Margaret Gullette (2004), E. Ann Kaplan (1999), along with newer colleagues such as Sally Chivers (2011), Ulla Kriebernegg et al. (2014), Leni Marshall and Valerie Lipscomb (2010), Timothy Shary and Nancy McVittie (2016), Cynthia Port (see http://ageculturehumanities.org/WP), and Aagje Swinnen and John A. Stotesbury (2012), has long analyzed age discrimination in literature, the arts, popular culture, and advertising. The background of this ongoing research, together with growing publicity about Alzheimer’s, made AD a logical arena for scholars to turn to.
Many of these scholars consider the importance of cinematic representation to popular understandings of aging. Kathleen Woodward’s (1991, 1999) and Margaret Gullette’s (1997, 2004) pioneering research on age in literature and popular culture continued over the years (see Gullette, 2017; Woodward, 2006). E. Ann Kaplan’s feminist perspective invites reconsiderations of how aging has been imaged in film and affiliated with trauma in melodrama (1999, 2001, 2010) while she also explores memoirs about dementia (2013). Her example is taken up within age studies by scholars who consider both what film says about aging and what aging says about film (Beugnet, 2006; Chivers, 2011; Dolan, 2017; Saxton & Cole, 2013; Swinnen, 2012). Amir Cohen-Shalev (2009) takes into account not only how aging is represented but how older auteurs created different visions of late life. Pamela Gravagne (2013) turns to popular films to explore what they say about age as a form of becoming. Sally Chivers (2011) explores the implications of a recent increase in the prominence of old age in cinematic plots. Josephine Dolan (2017) assesses celebrity and stardom as part of what Chivers has called the silvering of cinema. Timothy Shary and Nancy McVittie (2016) take a longer view to examine how Hollywood has depicted older adults. We work within this tradition of scholarship to consider how cinematic depictions of aging correlate to neuroscientific views of the aging brain as well as showing that other cultural expressions of aging hold promise to challenge what is becoming a dominant view of memory “loss.”
Dementia is often part of what these scholars say about aging, and considerations of its depiction in cinema proliferate in recent age studies. Such scholars frequently raise questions about the centrality of memory to contemporary life and to dementia care. Anne Davis Basting’s Forget Memory: Creating Better Lives for People with Dementia (2009) situates her qualitative research with people living with dementia and their networks within a study of cinematic projections of memory loss that make it seem like a frightening proposition. Sally Chivers (2013) situates Lee Chang Dong’s Poetry within the broader context of economic crisis and the value of the creative arts. Raquel Medina (2013, 2014) critically examines the politics of memory in Spanish documentary film that focuses on dementia. This cadre of critical work demonstrates how a cultural approach to dementia promises to unsettle central assumptions about what happens to subjectivity during dementia.
Neuroscience, Dementia, and Theories of the “Self”
Given that panicked public discourse follows neuroscience in routinely describing dementia in terms of what happens in the brain, how has the brain–mind–body relationship been represented in regard to this illness? What does this seemingly neutral discourse contribute to age panic?1 The overarching cultural anxiety about what is usually called “a loss of self” demands analysis, as does the pervasive assumption that the AD person has no “self,” no subjectivity. How might the way subjectivity is being defined contribute to this view? How might the prevailing view translate into inadequate care in facilities growing apace to meet increasing demand?
Neuroscientists discovered that the AD brain has plaques and neurofibrillary tangles that disturb its proper functioning. This purportedly results in the subject’s being confused, disoriented, and gradually losing first short-term and then long-term memory. So far most scientists are in agreement. For example, Antonio Damasio (one of the more humanistically inclined neuroscientists) states that because of blockages in the hippocampus, “new facts could not be learned”; damage to the temporal lobe cortices “prevented access to unique, previously learned factual information” (2009, pp. 244–245). Joseph LeDoux, likewise, comments about AD that “the disease eventually creeps into the neocortex,” compromising all aspects of memory (2002, p. 193). Many websites, using neuroscience discourses, talk of AD as a disease or illness of the brain. A common formulation is that AD is “a disease of the brain that causes people to slowly lose their memory and mental abilities as they grow old” [see online site]. The disease, we learn, is “characterized by the finding of unusual helical protein filaments in nerve cells of the brain. These twisted filaments are called neurofibrillary tangles” (2017).
But debates are increasingly heated as to exactly how plaques and tangles hamper the working of the brain. Some people with these tangles show no extraordinary memory loss, while others experience severe loss (Tanzi & Sisodia, 2007). Added to this is the fact that there are several different kinds of dementia, only some of which have been labeled AD, each showing different things going on in the brain. Scientists are racing to clarify which parts of the brain are affected by each kind of dementia in order to develop medication to mitigate its effects. This reveals a basic motivation that sidelines addressing care practices that might be as curative as medication, something that Peter Whitehouse (an outlier neuroscientist) has long argued (2008; 2013).2
Few neuroscientists, then, are interested in, or have time to consider, what concerns us, which is whether the AD brain scientists describe can support the concept of self—or the preferable term, subjectivity. Even fewer focus on brain-mind in the context of the body. Given the habits of their discipline, most neuroscientists focus on brain functioning disconnected from the body and avoid the entire issue of subjectivity. For example, an article relevant to our interests but that deals solely with brain functioning and structural connectivity studies the erosion of the connections necessary for the brain to function properly as this plays a role in older adults’ decline in cognition (Salat, 2011). Important (and necessary) as this work is, it needs to be situated in the context of the AD subject as a whole person.
In general, neuroscientists now understand the brain as a complex network of processes rather than as (previously thought) divided up into distinct sections, each with its own function. They also understand that exactly how brain as matter produces consciousness is still essentially a mystery. Because the question seems unanswerable, they leave that crucial issue aside. Yet, in order to understand how the AD person experiences the world, theorizing the issue of brain–mind–body is essential. As a reporter in the New York Times put it, “The challenge now is to explain how the inner world of consciousness arises from the flesh of the brain” (Johnson, 2016). This challenge may not be fulfilled any time soon; nevertheless, if produced by the workings of the brain, mind/self should not be reduced to those workings as in much neuroscience.
Detailed and brain-area–specific research is crucial as it pertains to discovering drugs that might mitigate functional losses, but as humanists concerned with discrimination against persons with AD, and looking for improved practices for treating them in care facilities, we argue that neuroscience theories need to be complemented by studies that include subjectivity and the body. If memory is so closely related to the concept of subjectivity, then indeed the AD subject seems to be losing her “self.” Psychological theories going back to John Locke and William James regard the self as intricately connected to memory in what is currently defined as a “self-memory system” (SMS). As Martin Conway puts it, “Memory and central aspects of the self form a coherent system in which, in the healthy individual, beliefs about, and knowledge of, the self are confirmed and supported by memories” (Conway, 2005, p. 595). And yet focusing too heavily on memory as such may occlude other ways AD subjects develop to assert subjectivity and enable new habits of relating to family members and care workers.
Michael Ignatieff’s (2000) novel Scar Tissue bears precisely on this problem of the neuroscientist focused on brain images and slides showing deterioration of memory sites and ignoring the person whose data alone fascinates him. The novel sets up a deliberately exaggerated pairing of brothers, one of whom is a neuroscientist studying AD (and other degenerative illnesses) while the other is a humanities-style Columbia University professor. As their mother develops Alzheimer’s disease, the novel charts the diverse ways in which the brothers handle the situation. The novel is told from the professor’s point of view: he is deeply troubled by, and intricately involved in, his mother’s illness. His attachment to her is partly an inability to let go and partly deep concern. This entails his following the course of the illness by studying his mother closely over the years. Predictably, his neuroscientist brother, involved in scientific research about the illness, is far more detached than his brother; he treats his mother as a scientific case study rather than taking up a filial position. Revealing his limited emotional and social being, he says, “The only people I can feel compassion for are people I find interesting” (Ignatieff, 1993/2000, p. 126). meaning scientifically interesting. When someone guesses he’s talking about his mother, he agrees: “She’s like a lab experiment,” he says (p. 126). Crucially, in terms of the positions we have staked out above, the brother continues to say that the “experiment” lies “in how much you can lose of yourself and still remain a human being.” A bit later on, the narrator is shocked to find that his brother has brought home slides of his mother’s brain and is tracking the gradual shrinking of parts of her brain linked to memory and selfhood. The brother interprets the images in a neutral voice, as if giving a lecture, while the professor/narrator is shaken to the core. Where the brother just sees a cascade of pathological effects, the narrator is “face to face with the neurophysiology of loss” (p. 131). For him, the word “cascade” has menace, and he sees “a body tumbling down a black, liquid-filled chute.”
In this remarkable novel, Ignatieff has found a brilliant way to stage important debates relevant to the question of the self/subjectivity as well as to the responsibility for ethical treatment of AD victims. Rarely has any text approached the experience of living with Alzheimer’s disease in as realistic a manner. The conversations the narrator describes tellingly convey both what remains and what is lost, but above all they show that, despite all, personhood remains.
Anne Basting’s (2009) work builds upon such dilemmas and debates. She shows that memory is extremely complex; its long history indicates how memory is linked to culture and how it changes as technology develops. Unlike psychologists and neuroscientists, Basting understands memory “as relational, as existing between people, not as belonging to one person or another” (2009, p. 69). Pamela Gravagne shares Basting’s view of memory, asking why we equate memory with self, and detailing the many different forms memory takes (2013, pp. 144–147).
Basting and Gravagne touch upon a deep reason for people’s fear of dementia. Seeing AD subjects puts people’s own sense of a unified self in crisis. As Julia Kristeva (1989) and other psychoanalysts have shown, Western culture sets extreme emphasis on the (illusory) boundary between self and other. The AD subject appears to have lost the ability to sustain such a boundary, causing distress in those around her. Basting (2009) emphasizes “the value of being in the present” as a way of offsetting fears of meaninglessness relating to this loss of boundary.
Since, then, the idea of “self” in dominant discourses is currently linked to the capacity for individuality and autonomy as well as memory, people in Eurocentric cultures are terrified of AD. They see that personality changes as the brain develops tangles and plaques. But although research indicates that usually negative changes in behavior and demeanor may be the very earliest signs of AD (Belluck, 2016), there is a huge variety in the changes, some even seeming positive. As in people without AD, there is no one common kind of subjectivity; in AD there is no single “decline” of that “self.”
The AD Subject Seen as Absent From Herself
Some humanists, convinced by neuroscience research, argue that the AD subject is in a state of absence from herself. For example, in The New Wounded, talking of her grandmother, philosopher Catherine Malabou (2012, p. xi) notes, “This was a stranger who didn’t recognize me. . . . This other person . . . was strangely absent.” Malabou later offers a more complex view, but such theory reduces mind/subject to brain. The figure of the mother in Steven Kadam’s play Humans portrays an AD subject (the mother/grandmother) as totally absent from herself and her surroundings except for one brief moment. A short film, Ophelia, starring Hanna Schygulla, portrays a female AD subject as lost to the world.
This is the figure that dominates popular journalism. To cite just a few of many articles in the New York Times, in November 2014 a report, “Facing the Challenges of Keeping an Aging Nation on its Feet,” included a somber photo of a fragile gray-haired woman, bent over and struggling to move with the help of a walker. In November 2015, a report, “As Cognition Slips, Financial Skills Are Often the First to Go,” discussed the difficulties for AD subjects to keep atop of their finances. The photo (for once) showed a frail elderly man, with a blank face, staring straight ahead, while his depressed relative looked on.
Many New York Times articles address the inadequacy of long-term care facilities, similarly offering negative images. For example, a report in the New York Times in April 2015, “In Race for Medicare Dollars, Nursing Home Care May Lag,” showed an image of a frail elderly lady, sitting in a cluttered room with a lost expression on her face. The story discussed the neglect and injuries AD people suffer in many facilities. John F. Waskik, meanwhile, in his December 2015 piece “Long-Term Care Insurance Can Baffle, with Complex Policies and Costs,” shows the dilemma that faces dementia patients in terms of financing their needs. In an article on January 27, 2017, “Nursing Home Residents Gain New Protections,” Paula Span asked experts to grade care facilities: “Experts,” she said, “tend to sigh at this question and point out, correctly, that the country’s 15,600 facilities are vastly different—rural and urban, for-profit and nonprofit and government-run, home to the reasonably healthy and the extremely sick, high-quality operations and appalling ones. Assigning grades can be folly.” The article goes on to say that “when prodded, they come up with decidedly middling assessments.”
What’s missing from these reports, images, and most science discourses discussed so far is consideration of the AD person as a whole. Instead, this subject is reduced to brain neurons, to a statistic—an element in a study—or to a state of emptiness, often (in images) given a single fixed blank expression. It is no wonder that such representations invite panic. As Ignatieff’s (1993) novel showed so well, missing are context, language, and emotions, which, in turn, belong to the body as well as the mind. In what follows, media representations that to varying degrees offer more complex narratives are analyzed as they pertain to these issues.
Select Cinematic Case Studies for Pervasive Images of AD Subjects and the Gendering of AD
Select commercial or independent films that have received relatively wide exhibition and discussion present a more complex image of the AD subject than does science journalism or neuroscience, while often persisting in showing the subject finally as absented from herself. Since a personal narrative is in play (unlike neuroscience discourse), texts involve emotions and relations between people. Thus, perhaps without realizing it, texts belie the predominant view.
Case Study #1: The “Absent Self”
Richard Eyre’s interesting and warm-hearted film, Iris, based on John Bayley’s memoir of his wife, Iris Murdoch, the famous author, depicts Murdoch’s slow “descent into” dementia but offers a complex view—even if Eyre does continue, for most of the film, what has become a familiar trope of an “absent” self. As so often, Eyre’s images show separation of brain and mind on the screen, picturing brain scans separated from Iris’s body. This technique encourages reducing mind/self to brain. Many shots show Iris staring blankly at a piece of paper or tearing up her notebook distractedly, the pages left to fly away. In such scenes, Iris is unaware of herself, thus showing self reduced to brain malfunctioning. But while often adhering to this absent-self theory, the film also shows how the former Iris bursts through, returning Iris and her husband to their playful selves. In one scene, Iris jumps out of the car and runs into the woods. Bayley follows, and the two end up falling onto the ground, into one another’s arms, roaring with laughter.
In terms of care, this film is intriguing in showing the cultural differences in treating dementia in the United Kingdom and the United States: a young, intimidated doctor comes to the Bayley house to talk to John and Iris about her condition, but he seems afraid to state his impression or advise anything very specific as regards care. At the time in Britain, dementia was seen less through a medical lens than it was in the United States. There is no rush to have Iris admitted to a home (although audiences would have perhaps liked to see someone come in to take care of the dishes and the trash!). At the end of the film, we see Iris apparently dancing in a corridor in the pleasant long-term care facility she is finally taken to. As Sally Chivers notes, like the pages Iris earlier let fly (perhaps signaling “a new freedom of Iris’s mind”), “Iris floats away to death, leaving John yearning as he did in his youth to have what she has” (2011, p. 84).
As a whole, then, the portrayal in Iris is more complex than the neuroscience that generally marginalizes affect and the body for a focus on cognition, and the treatment is less medicalized than it would typically be in the United States today. In reality, it is not as if there is an on/off switch in AD, with people permanently becoming someone else or a blank entity, as so often described in popular discourse. As Pamela Gravagne puts it, “These moments . . . when the world of then and the world of now, the person as she was and as she is, come together, . . . give John hope” (2013, p. 144). Paradoxically, film portrayals of AD may come closer to how AD is experienced in life because film can bring in multiple dimensions—affects, the body, “atmosphere” (or conveying energy flows between people), music, as well as language and dialogue—whereas neuroscience, in isolating study of neurons or plaques, provides a very unreal (even surreal) impression of the illness without involving the person who has it.
Case Study #2: AD as Exposing a Self Beyond Social Norms
A second theoretical approach, found in the work of sociologists Nancy Harding and Colin Palfrey (1997) on AD, relies on cognitive psychology. They suggested thinking of AD subjects as abandoning a self that was “adapted” to prevailing cultural norms and returning to a suppressed “core” self. While this way of putting it involves a problematic essentialism, what we take from it is that with AD, as Kaplan puts it, “subjectivity is no longer beholden to gendered and stereotypical norms. The self becomes less defensive, less beholden to so-called ‘proper’ ways of being” (2018, p. 9).
A good example of this is the film Away from Her (2007), itself an adaptation by director Sarah Polley from a story by Alice Munro (2001), “The Bear Came Over the Mountain.” Polley’s reworking of Munro’s canny short story dwells less on brain functioning as such but offers insight into how neuroscience and depth psychology need one another. Unlike Iris, Fiona has been a stay-at-home housewife of a university professor, Grant Anderson. She long obediently endured her husband’s infidelities, although he is now retired. Signs of dementia emerge when Fiona loses her way in the snow and needs Post-Its to find things in her house. But in this case Fiona admits herself into a long-term care facility rather than being ordered by a doctor (as in Iris’s case). Once there, Fiona enters into an intimate relationship with a man, Aubrey. Far from being absent from herself, then, and far from returning to her normalized old self, an unconscious is at work in tandem with her brain malfunctioning. It seems that Fiona has acquired a new, confident self, able to ignore and deny her husband, who constantly visits and who gradually becomes jealous of her new relationship. Apparently, Fiona is unconsciously getting revenge for Grant’s many infidelities earlier in their marriage and moving toward what she desires. It seems at the end, however, that she at least temporarily recognizes her husband, implicitly forgiving him. While still having memory issues, Fiona is able to engage bodily with Grant, showing affection, in a care setting that encourages relationality as a positive sign and as beneficial (Chivers, 2011, pp. 85–93). The setting allows for what Pamela Gravagne calls “moments of clarity or grace” (p. 144), and it’s these precious moments that keep Fiona and Grant together.
Away from Her is the only live action film in the commercial films addressed here where the majority of scenes take place in a care facility. This facility is in Canada, where health care is closer to the European system, with basic health-care services being less corporate and more attuned to the ill person. Nevertheless, good long-term care facilities, a domain of Canadian health care that is partially privatized, is by no means affordable for everyone. As Sally Chivers (2011, p. 93) notes, “Away from Her poses pressing practical problems” regarding care, with spousal care in the home as the least costly alternative. The facility seems well run with friendly staff for the most part—the director is presented as somewhat curt, but her efficiency is not in question. In a sense, the home, in its spacious, colorful environment, is a model for many new facilities in America for the privileged. Fiona’s husband bonds with one staff member, Nurse Betty, who seems to understand what Fiona is up to in making a connection to Aubrey. In terms of care homes, it is notable that Grant can come and go as he pleases, visiting at any time, although the restriction on visits for the first month (supposedly to allow the patient to settle in) provides the opportunity for Fiona to bond with Aubrey. Sex between patients is apparently permitted (or at least not forbidden), and the surroundings are clean, light, and pleasant. However, the matter of cost is only briefly mentioned, not for Fiona’s case but for Aubrey, whose wife, Marian, aims to bring Aubrey home since their insurance has been used up. Away from Her was ahead of its time in having so much of the action take place in a care facility, even if the narrative itself was not about such facilities per se.
Still Alice, another notable AD film, adapted by Richard Glatzer (2014) from Lisa Genova’s powerful novel (2007), marks a crucial generic step forward in that the entire plot of the film centers around Alice’s AD and her struggles to come to terms with it. Since Alice has a genetic version resulting in early-onset AD, the film offers a slightly different situation than other AD films. New also is the way viewers are brought into the fearful inner experience of suddenly losing one’s being in the world, one’s place in space. When Alice’s brain temporarily cannot remember directions, usually habitual for her, cinematic techniques convey her terror. Alice’s panic at suddenly not recognizing where she is on the Columbia University campus is presented in such a way as to terrify the viewer. Glatzer has his camera circle around Alice so as to make viewers dizzy. He also blurs the scene around Alice to indicate her inability to focus. But again, the personality does not totally disappear as the film proceeds. Far from it. Alice is shown trying to come to terms with her illness, struggling to continue with her professional life as long as she can. She has never been a traditional mother to her three children, given the demands of her successful career. Now much that was always important in Alice’s relationships becomes more important. Her professional career is soon over, and, significantly, Alice gets close to the one daughter whose acting career she did not approve of.
As Alice’s illness proceeds, she and her husband face the question of whether or not to admit Alice into a long-term care facility. The decision is especially acute since her husband’s career as a cancer specialist is taking off at the same time as Alice gets ill, requiring a move to another town. Viewers know from prior experience in life and the media what a huge decision it is to move a loved one into a long-term care facility. Anne M. Wyatt-Brown’s edited 2016 book, The Big Move (written with colleagues), also provides insight into such a dramatic change. It was especially hard in the case of Dr. Wyatt-Brown, since she was not herself ill. In Still Alice, the very daughter with whom Alice originally had conflicts returns to stay with, and look after, her. Bodily contact with her daughter seems to mitigate Alice’s increasing loss of language as the illness progresses. In a poignant scene, the daughter reads her mother a moving passage from Tony Kushner’s Angels in America, and we see Alice taking in what she can. However, the film ends, as if de rigeur, on a despairing note; we watch Alice’s painful decline as she succumbs to the disease. While mind/subject is not reduced to brain malfunctioning for much of the film, in the end the popular AD construction demands that Alice—along with other female protagonists—become the blank, empty subject of the AD discourse.
Ignatieff’s Scar Tissue (1993/2000) raises specifically the issue of a self beyond the norm that remains despite cognitive and other losses. Late in the novel, there’s an important debate between two brothers on the question of whether or not their mother still has a “self.” The philosopher sees importance in his mother being able to say something like “coffee,” in her willfulness in relation to what people are doing to her, in her insisting on walking as it got more difficult, etc. He recognizes that things are changing and she is less and less able to talk and eat by herself, but still he insists that even if she is leaving her self behind, perspective and awareness remain and are a kind of being. The debate continues when the narrator invites his mother, who was an accomplished painter before her illness, to draw a picture of him. In a fascinating scene, the narrator imagines the workings of his mother’s brain as she indeed picks up the charcoal and draws a good likeness of her son. But all too soon, she loses the ability to draw. “The connection that had been made was now broken,” he notes (Ignatieff, 2000, p. 153). While her first language, the primary capacity of drawing, had survived all damage, the hand that had been drawing was not connected to intentions and feelings. The scene follows a chapter where the narrator cites from an essay he had written on Willem de Kooning, who, after being diagnosed with AD, went on to make many successful paintings. Critics debated whether or not these could count as “art” because they were made without deliberate intention (pp. 148–150). Once again, we are reminded of the concept of a “core” self that may come into being as “adapted” or social selves wither. The debate is never resolved one way or another, but much of the work here anticipates ways in which scholars and artists understand the AD subject.
Case Study #3: Gendering of AD
We discuss female protagonists because all the central figures of the widely circulated and discussed films are female. Why is that? Men also succumb to AD, obviously, yet public discourses and dominant representations in the media portray this as a female illness. It’s true that more women than men get AD, but that’s partly because, hitherto, women lived longer. That is rapidly changing, and men too are living to their 90s and beyond. While this topic cannot be fully addressed here, a brief look at memoirs, films, and TV series featuring male protagonists with AD seems in order to see how these images play out differently.
Interestingly, European films generally feature more stories about men living with AD, and unfailingly, these AD subjects do not become passive. For example, Wallander, in the Swedish crime series named after him, contracts AD at the very end of the series. But unlike the way the female figures behaved in the stories discussed above, Wallander is simply angry at the Alzheimer’s diagnosis he finally gets. Far from consulting with his family, Wallander tries to forget about his illness. He won’t talk to anyone, including his daughter. This is quite the opposite of the behavior we see in the female AD subject, who seeks out help and wants support from her family. Wallander rather decides not to deal with his illness, creating dangerous situations. He nearly crashes his car because of a sudden inability to know where he is going. Soon after the near accident, he is back at work. Similarly, Bille August’s film, A Song for Martin (2001), portrays a famous orchestra conductor unable to adjust to having AD. In refusing to relinquish his role, he damages his love relationship and ends up harming himself and others. Other films show men who accomplish risky tasks despite having AD: the French film Cortex (2008) portrays an ex-cop moving into a care facility, where, instead of sitting around aimlessly, he is able, despite his AD, to understand there is something suspicious in the frequent deaths of AD subjects he befriends and sets about discovering the killer. This is an image of a male AD remaining active and mastering his illness. Two other films—one from Canada, Remember (2016), one from Belgium, The Alzheimer’s Case (2003)—similarly show male protagonists able to carry out revenge for past wrongs despite living with AD, quite the reverse of any female protagonists to date. The few male AD protagonists in the United States similarly continue to be active: in Nebraska (2013) the hero just keeps traveling although clearly losing his memory, and his son indulges him. In the 2015 film Mr. Holmes (based on the final years of the famous detective), the case is a bit different, but still Holmes is allowed to decline gracefully and in a kind of peace not often shown with female AD characters. A Spanish film, Amanecer de un Sueno, likewise shows a male protagonist fight against his cognitive decline, working in his store as long as possible, and remaining at home with his grandson caring for him, until he dies. And some films (e.g., Marie Novaro’s Old Cats (2014) begin to show feisty older women, resisting dependency. Some representations are starting to show men with AD being cared for in the home: in Iranian Ashgar Farhardi’s film A Separation (2016), the protagonist cares for his AD father in his home; earlier Judith Levine (2004) wrote movingly about her father’s dementia leading to her caring for him also at home (Kaplan, 2013). Clearly, this project requires more extended attention, but our examples blatantly open up the gender paradox about AD. It awaits further research.
Women with AD, then, are usually shown in their homes, with husband and children, whereas the few male representations of AD subjects are either still working (or trying to work), find ways to use prior skills despite having AD, or are seen allowed to wander outside their home. In other words, these figures resist being dependent and confined, as many works show is the case for female AD subjects. The return of a female stereotype in U.S. AD images of women is disturbing: Why do so many portrayals feature professional women? Such narratives show intellectual women returning to perhaps marginalized aspects of the subject—such as putting closeness to others ahead of career—to emerge as tangles develop and the brain relies on different neuronal interchanges. Isn’t it interesting that so many of these female AD narratives—going back as far as Do you Remember Love? (1987)—focus on an intellectual woman who, once ill, return to the stereotypical female role of wife, mother, comfortably dependent, as women used to be? Is AD a punishment for moving into the male sphere and being a successful professional woman?
Discourses of Care
To differing degrees, the three commercial films discussed so far, while depicting transformed conceptions of selfhood on the part of the person with AD, also convey the effects of AD on the family members who must learn how to be caregivers or find a way to provide care. Each film portrays attempts to provide care at home up to the moment that it seems unmanageable, at which point institutional care becomes justifiable and even seemingly necessary. In Iris, when things get to be too much for Richard, he moves Iris into an idyllic space. In Away from Her, Fiona makes a remarkable pre-emptive decision to move herself into a care home, leaving her husband forlorn but still freed up to pursue his long-time habit of marital infidelity. In Still Alice, while Alice does not move into a nursing home, the threat that she might have to looms over the message she records to her future self, which is a step-by-step manual for committing suicide. Her husband’s career prospects eclipse her own apparently gloomy future.
The figure of the nursing home, something Betty Friedan named a “specter,” magnifies the disturbing assumption that AD results in a “loss of self,” for both the person with the disease and potentially the family member who takes on the role of caregiver. These films are propelled by a popular assumption that people prefer to be cared for “at home” and that not being able to offer that is an individual and familial failure (Vladeck, 2003, 2011). As James Struthers (2017) puts it, “Few institutions have been surrounded by as much confusion, such gendered contradictions, and so many cultural anxieties as care homes for older adults, which bear the weight of cultural and economic uncertainties around population aging, changing perceptions of frailty and family ties, the meaning of dependence and independence, and fears of mortality” (p. 279). Nursing home advertising and caregiver guidebooks capitalize on this popular belief, stressing the homelike atmosphere of various institutional settings that face the impossible task of not only providing good care to a wide range of people with AD but also doing so while conveying a sense of home to a diverse group of people whose notions of home are highly variable (Adams & Chivers, 2013; Chivers & Kriebernegg, 2017; Lanoix, 2017; Struthers, 2017). What is more, this popular positioning of long-term residential care usually entails looking away from the work of care, intensifying the invisibility not only of unpaid domestic labor but also of often racialized underpaid carework. Thus, not only the subjectivity of the person with AD is effaced, so too is that of the careworkers who do bed and body work.
Select Cinematic Case Studies for Pervasive Images of Long-Term Care
The films discussed in the above section are good illustrations of how popular film shifts the focus from the loss of self to trying to save the family members without AD from the exhausting and self-sapping labor of care for a loved one with AD. In this section the focus is on how films show an institutional setting so as to emulate the metaphoric models of care—the home, the hotel, the hospital, and the prison—that circulate in advertising even for public facilities. Such images, recently joined by an appealing village model of care, do so at the expense of imagining the full possibilities of relational care (Whitehouse, 2017).
Case Study #1: Hotel–Hospital–Prison
Films about AD that are set in nursing homes are rare. Though they do tend to emphasize the negative aspects of the setting, often offering something akin to a prison film, they also typically highlight the types of family and resident relationships that develop or disintegrate as the result of an AD diagnosis. Though not depicting dementia, the Icelandic film Children of Nature (1991) offers a good example of how even a relatively good institution is something to escape. The central characters, an older couple reunited in their final years when they come across each other in long-term care, stage a late night getaway, garbed in their newly purchased running shoes. That very scene, reminiscent of the prison break scene so common it is parodied in the animated film Chicken Run (2000), appears in subsequent films that feature nursing home scenarios, if only partly, such as Cloudburst (2011), Cloud Atlas (2012), and 100 Year Old Man (2014). It’s such a common narrative arc, representative of a cathartic desire to see people free themselves from the apparent ravages of old age, that it appears in Taco Bell commercials and social media memes.
Those few films that depict care home life without an escape motif tend to underplay dementia and overplay both opulence and camaraderie. They also tend to be set more in retirement homes than those with full nursing care. Thus, they do not offer a sustained examination of the supposedly absent self, as in the previous examples. Within care home films, instead, the brief glimpses at memory loss shore up the sense of what a good old age might be, i.e., aging without “losing” memory. In Quartet (2012), for example, a lovely English manor is turned into a retirement home for musicians who are too old to live alone but too talented to discontinue their professional pursuits. They make music together, walk in lovely grounds, rekindle old flames, and enjoy communal dining rituals. Their value is reinforced both in their abilities to continue performing and also in their role as teachers to a younger generation of students who come to the retirement home for music history lessons. This is a heartwarming and popular portrait of what Ronald Harwood, author of the play on which the film is based, calls “a template for care.” But two things are notably sidelined—AD and carework. While one character does have memory lapses, they are initially the stuff of comedy, and subsequently, when the lapses threaten to derail the final gala performance, they are ostentatiously set aside. As Cissy readies for a gala reprisal of the titular quartet performance, she slips into the past and believes herself to be leaving on a trip. Her friend Reginald tries to reason with her, while whispering, “Don’t let them see her like this,” a hint at a hierarchy of ailments within retirement home life. Reginald confronts Cissy with the reality that she is about to perform on the gala stage, not meet her parents for an ocean voyage, which is of course a fruitless pursuit. Significantly, it’s the previously haughty and distant former opera diva Jean Horton who impresses her friends by knowing enough about memory loss to go along with Cissy’s apparent delusion. By doing so, she manages to prevent Cissy from walking onto stage and offering an embarrassing revelation of her memory loss. In the process, Jean guides Cissy past the bewildered looking retirement home staff through a lush dressing room that is apparently part of this luxurious communal dwelling. For a care home to be a desirable space, it seems, it has to hide both AD and carework; this is telling of a cultural moment rife with panic about the potential of increasing numbers of older adults with memory loss requiring care at the same time as they apparently lose a sense of self (Chivers, 2016).
The Best Exotic Marigold Hotel (2012) and its sequel (2015) adopt the same tactic of imagining a luxurious hotel-style retirement home that welcomes older British adults with means and ongoing capacities. A set of British seniors adventurously leaves the United Kingdom to retire to Jaipur and live in the humorously named Best Exotic Marigold Hotel for the Old and Beautiful. As in Quartet, AD is not the central focus of these films, which, again like Quartet, showcase the ongoing lively exploits of the new residents, including new careers and new romantic entanglements. But, as in Quartet, one of the senior characters attempts to cover up his memory loss, though it does not seem to be posing much of a challenge to his day-to-day life or pursuit of romance in Jaipur. Douglas Ainslie manages to continue active work as a tour guide, though, by relying on a local boy as a prosthetic device, again backgrounding and underplaying the work of care. Dementia here is only a hint, and it is a humorous obstacle to be overcome with the help of invisible labor and some older female friends.
The examples of Cissy in Quartet and Douglas in Best Exotic Marigold Hotel demonstrate that to depict the luxurious possibilities of the nursing home, it is necessary to underplay AD. The Spanish animated film Wrinkles (2011; 2014), adapted by Ignacio Ferraras from Paco Roca’s graphic novel (2007), portrays day-to-day life within a nursing home with only brief fantastical reprieves from the overwhelming sterility of its institutional setting. Like Quartet and the Best Exotic films, it portrays a set of friendships among residents, but it is distinctive in including characters with AD among the group. The film uses 2D animation to convey what appears to be a fairly straightforward prison-style drama in a hospital-like setting, complete with a failed escape attempt and its collective ramifications, accompanied by a schmaltzy score. In doing so, it makes an appeal to a broader audience and brings that audience into the position of imagining varied perspectives on care for people with AD.
While films such as Iris and Away from Her portray brief romanticized glimpses of what living in long-term residential care might be like, and films such as Quartet and Best Exotic Marigold Hotel offer longer visions of luxurious active life within retirement homes, Wrinkles offers a sustained opportunity to gaze at a revealing if cartoon portrayal of detailed day-to-day life. Viewers witness older adult residents lined up in their wheelchairs snoring in the common room, a wife resident feeding her husband, a male character who wanders the halls repeating what other residents say, a female character who perpetually wants to phone her children, another female character who believes herself to be traveling on the Orient Express. The characters work together to try to evade a seemingly inevitable move upstairs to the locked dementia ward and to outwit administrative staff who test competencies.
Wrinkles uses animation to its advantage to illustrate the power of inhabiting an alternate cognitive world rather than demanding a character with dementia face a confusing apparent reality. From the opening scene, viewers are led to believe in the altered perspective of the central character Emilio, who thinks he is in a bank until the animation shifts to reveal that he is in his bedroom; here he is yet again refusing to behave as his son and daughter-in-law would like him to. When they decide it is time for him to move into a nursing home, fellow resident Manuel takes him on a guided tour. Manuel plays along with numerous fellow residents who have various forms of dementia, seeming to take financial advantage when he can—such as pocketing money from a woman who would like to phone her children. The film appears to flash back to the past when Manuel and Emilio enter one resident’s room and the animation switches to a train scene; there a younger woman, sitting near the window, is smoking an elegant cigarette in a holder, admiring the scenery from her carriage. Manuel plays the role of conductor until the film suddenly switches back to the present-tense setting that depicts an old woman with the same hairdo, sitting near the window of her nursing home bedroom. This foreshadows the way that, as Manuel (and eventually Emilio) come to realize that Emilio is in the nursing home because he too has AD, Manuel softens into a generosity previously not apparent. Rather than mocking, for example, he buys another resident a water gun so she can shoot the aliens she believes are lurking in the parking lot.
The film has shown characters haunted by an intense fear of moving to the second floor, where the serious cases eek out an existence quite different from the more able residents on the main floor. But when Emilio takes a turn for the worse, his new friend Manuel willingly goes upstairs with him to help him with eating and other daily activities. While this appears to be a heartening story of male friendship, it is telling about the place of care work in the contemporary cultural imagination. The animation of Arrugas, while offering a fantastical view of the interdependent relationships that can develop among residents of long-term residential care, still largely avoids depicting care workers. As such, it reveals the mundane day-to-day of the home—showing rows of residents snoring in their wheelchairs, for example—but not really its physicality, especially not in terms of the bed and body work of care home life. Though the hallways and soundscapes evoke a hospital, the treatment is similar to the prison film version of long-term care.
Fully steeped in age panic, Jeanette Catsoulis of the New York Times asserts that Wrinkles is “an animated look at creeping inanimation” (2014) For her, “it takes more than cartoon characters to buffer the horror of human decline,” but she does see the value of at least using the form to try, explaining that “watching scenes like these in live action would be unbearably sad.” To Roca’s claim that he didn’t really make anything up, she retorts, “Maybe he could have kept that to himself.”
Catsoulis’s ageism offers an example of why we need to think very carefully about how to convey the inner workings of long-term residential care and how to portray dementia to a broader public. Perhaps for Catsoulis any mention of aging will just be terrifying, but for a broader audience there is the potential to use the film medium creatively to convey ageing without distracting viewers with images of older bodies that might, initially and unfortunately, impede as is the case in some documentary films. Animation is an intriguing option due to its broad appeal, symbolic form, and ability to move between realist and fantastic perspectives seamlessly. However, the animation of Wrinkles, besides building on some anecdotes shared with Paco Roca, largely avoids elder and care worker voices. This deliberate overlooking, to the extent of casting careworkers only to ignore them, that occurs in Quartet, the Best Exotic films, and Wrinkles offers another way to escape the connotations of AD. While there is some celebration of the potential to playfully inhabit the memory loss, doing so involves absenting the selves who do the work of care.
While Wrinkles offers a relatively hopeful view in terms of resident relationships, it also displays aspects of dementia care prevalent within Peter Townsend’s (1964) pessimistic nursing home ethnography The Last Refuge. In a chapter about the local authority postwar home, he notes that “For most of the morning and the afternoon the residents are seated in the lounges and there is not much cause for any of the staff to go in, except possibly when cleaning” (p. 83). While the scenes depicting seemingly warehoused seniors snoring in rows in a common room in Wrinkles might seem to reflect a dated view of nursing home care as described in Townsend, they resonate with recent findings from ethnographic research conducted by the Reimagining Long-Term Residential Care research team. In particular, at a site in Ontario, Canada, in 2013, the only way for staff to manage their work (given staffing ratios) was to line residents up for long periods in a lounge near the nurse’s station while they attended to the crushing amount of paperwork required of them in this era of accountability and liability management. While perhaps the space was designed to encourage resident interaction, its function was to effectively warehouse residents, not unlike Townsend’s problematic doom and gloom predictions. Further, while there was a Snoezelen room, also known as a controlled multi-sensory environment, intended for dementia care, it was used as a storage space since there was no time for staff to assist residents in using it. The absenting of the work of care, from both opulent retirement home settings without room for sustained dementia care in Quartet and the Best Exotic films and the sparse nursing home setting for people with dementia in Wrinkles, collectively signify a structural problem. Until we value care work, the latest findings in neurological research—beyond pharmaceutical remedies—are unlikely to transform institutional care. There is no need to panic, but there are concrete steps that could address misleading fears that an epidemic of dementia will surely follow population aging to the great detriment of the economy.
Alternative Conceptions of AD
Alternative views of AD are central to advancing the cause of better treatment of AD subjects in care facilities as well as to undermining a widespread sense of age panic. It’s important to clarify that there’s no intention of setting up a rigid dichotomy between neuroscience and cognitive psychology, on the one hand, and humanities and arts, on the other. If some humanists and artists accept the neuroscience absent-self view, several neuroscientists understand the need to look beyond studying plaques and tangles in the brain. The aim here is to bridge research agendas and the “cultures” of different disciplines. Not all neuroscientists avoid taking the body and subjectivity into account. For example, while Damasio offers classic neuroscience data about memory and brain neurons, he also situates the brain as absolutely connected to the body as a whole. For him, the mind refers to emotions, which are also bodily, as well as to consciousness/the unconscious, and different states of being (joy, sadness, anger, and importantly, memory). Kenneth Kosik (2010), neuroscientist and Alzheimer’s clinician, has written widely about what the AD subject can do to improve his or her condition in terms of lifestyle as against taking drugs. He certainly sees the AD subject very much as a person who is living with dementia and able to carry on relational and active life. Meanwhile, Peter Whitehouse (2017), acclaimed neurologist, in wide-ranging interdisciplinary research on AD, moves beyond narrow science to dealing with ethics, the arts, natural environments, issues of public health, and questions of care.
In addition, unlike films such as Quartet and the Best Exotic series, this project does not gloss over the very serious aspects of AD. The usually inevitable progress of the disease has been well documented, and so far there’s no way to prevent its devastation. At best it can be slowed down. But AD, as we saw, is often presented as an on/off button: one minute you are fine, but the next you are an absent self. In fact, as some of the films above show, AD has a series of stages during which the “self” changes as memories become harder to access. But the self does not disappear. Something remains, and those interested in alternative care practices focus on how to build on what remains or, indeed, to reconsider the value of what has been there all along. People may have some years in which to enjoy life if in a very different way than before. From this perspective, if we change how we think about the illness, alternative practices may have concrete results, and a broader social understanding of the value of an older populace beyond cliched ideas of wisdom and a storied past becomes possible.
Many age studies scholars came into contact with AD in their personal and professional lives. Alternative views of AD began to emerge synergistically with experiences scholars and artists were having in relation to the illness. Personal stories, memoirs, and films documenting practices and perspectives began to appear in the 1990s, providing data from which scholars began to develop theories and practices. Anne Basting, whose projects we have already mentioned, was one of the first to take an activist stance on AD in terms of engaging in projects with people experiencing dementia and developing influential alternative views.
Dana Walrath’s engaging graphic medical memoir (a relatively new field), Aliceheimer’s (2016), starts to expand perspectives of the AD subject toward the more complex views of scholars like Anne Basting and others. In Aliceheimer’s, Walrath’s mother creates a new self as her dementia advances as against becoming the blank “absent” subject of popular media or even returning to a culturally stereotypical self. In this case, as often, the interest in AD emerged from Walrath’s direct experience with her mother. The complex view is partly aided by the author’s chosen graphic form. AD is performed through the integrated combination of text and drawings; these say so much more than can either a photographic image or written text alone. A graphic text is able to slow things down and, in so doing, come closer to revealing inner experience.
Walrath (2016) approaches her mother’s dementia through the lens of her training in medical anthropology together with the novel Alice in Wonderland. This latter text no doubt came to mind given that her mother’s name is also Alice, and she is apparently “disappearing” into her own “wonderland.” There is also reference to the movie, Alice Doesn’t Live Here Anymore (1974) (another obvious metaphorical parallel to Walrath’s mother’s state), generating a complex text. Walrath wanted to make amends with her mother by bringing her home when the illness got worse. Thus, Walrath is able, lovingly, to observe her mother closely, engaging in a more motivated watching than could be expected from a caregiver outside the family. She is able, moreover, to interpret Alice’s thoughts through her knowledge of her mother’s history and relationship to her husband, Walrath’s father. For instance, when enjoying meat for dinner, Alice asks her daughter where she got the meat, stating, “Isn’t there rationing”? Walrath immediately understands her mother to be mentally back in World War II, when indeed there was rationing. As always, Walrath does not try to bring her mother back to the present date; she is simply glad to see that her mother’s comment made sense to her given a certain context. What seem like arbitrary fantasies or hallucinations, then, are seen to follow alternate logics. Alice’s brain, in other words, still works, but it’s working differently. Walrath comments that instead of sticking with science and biomedicine, which define visions as symptoms to be eradicated, she and her husband rather used “other branches of science” (they say this tongue in cheek) to interpret Alice’s visions, namely Einsteinian space-time travel (Walrath, 2016, p. 37). Alice’s special power, from their point of view, was her ability to accommodate simultaneous realities in accordance with relativity theory.
In line with Basting, Walrath (2016) insists that “the biomedical story of dementia and how we approach aging globally” is in desperate need of revision (p. 4). While in the drawings Alice’s clothes are shown as cut-up pages from Alice in Wonderland, her face is drawn in effective and diverse ways, communicating her powerful emotions (fear, wonderment, sadness, curiosity, and more) as her illness develops. Alice’s different feelings are vividly expressed by Walrath altering her eyes, mouth, hair, eyebrows, cheeks. Sometimes a missing part of the face produces a devastating effect. In other images, in communicating her mother’s new special powers, Walrath draws Alice’s hands reaching up toward the sun or hallucinating her dead husband up in a tree as she tries to grab him. Images convey Alice’s confusion about where objects belong, her mixing up past and present, her fantasies; memories are all presented graphically in the brilliant drawings throughout the book. Walrath describes her mother’s “internal governor” (akin to the metaphor of an “adapted self”) disappearing, allowing new subjective aspects to appear. “Alice found part of herself that she had kept hidden,” Walrath (2016, p. 19) notes, rather than returning to a stereotype.
Turning to alternative activist views, some scholars of AD engage in actions based on an interest in disproving the absent-self view of AD and developing new practices for care. These scholars understand the AD subject as a whole organism, very much as we saw Damasio theorize above. Using the notion of brain–mind–body as an integrated system, such that while one part of the self may flounder, others remain, Anne Basting, Aagje Swinnen, and others explore new ways of giving AD patients care. They base their projects on understanding that the “self” is constituted via brain–mind–body all working collaboratively. These authors accept that dementia is a very serious condition but refuse to give up on such individuals as Malabou and others seem to do, following popular representations and discourses. Importantly, they do not necessarily look for hope in arguing for a new mind/subject emerging, as in Away from Her and, to an extent, Still Alice and Aliceheimer’s. Rather, they focus on helping dementia subjects develop alternate ways of being, that is, ways other than those focused on cognition and individuality. As Basting notes, memory is relational; that is, it exists between people rather than as belonging to one particular person. She warns against dismissing people with dementia as no longer able to be part of life; rather, she says, such people “offer all of us their vision of the world in images, movements, stories and phrases” (2009, p. 69).
Material aspects of long-term care facilities—as discussed above—are obviously crucial in this regard. Patients’ well-being and even their abilities as regards memory and communication depend greatly on the nature of their environment and what is asked of them. It is productive to contrast Danish ideology (analyzed by Peter Simonsen) regarding the elderly to that which emerges from the U.S. form of care (Bruce Robbins calls it “welfare capitalism”) because Americans see that their system, and the values it’s based on, is partly responsible for the current cultural anxiety about AD in the United States. The way AD subjects are constructed results in the discrimination and stereotyping so common in public discourse. What is insufficiently taken into account in U.S. thinking about AD is the brain’s plasticity. Given the right kind of physical and care environment, AD subjects can improve because of the brain’s ability to change (Armstrong, 2003; Kosik, 2010).
If there is such a thing as a community or group subjectivity (as non-Western cultures believe), some scholars suggest AD patients can develop it. Anne Basting’s innovative Penelope project working with a theater group in a long-term care facility in the Midwest encouraged people with dementia to become subjects in-relation. The film Penelope, documenting the development of the project, provides a fascinating glimpse of possibilities for future care in similar facilities. Once granted permission by enlightened administrators, Basting’s group more or less moved into the facility to encourage patients and staff to take part in a unique version of Homer’s The Odyssey; it focused on Penelope as the subject who “waits,” as do persons in long-term care facilities. Basting’s film documents the gradual accommodation of the staff in the facility, together with AD subjects, to the presence of Basting and the actors, showing the step-by-step development of the collaborative performance. Once fully rehearsed, Penelope was performed for a public audience several times. Importantly, in the film we see the obvious changes for the better as the AD subjects engage with the actors and one another over time. People become more active and expressive as they work on the play. They bond together in a kind of group subjectivity, replacing the obsessive focus of Western cultures on autonomy and individual personhood.
Similarly, Aagje Swinnen’s research at the Alzheimer’s Poetry Project in New York City (founded and directed by Gary Glazner) showed how, over some weeks, AD subjects came to enjoy and even recite poetry (Swinnen, 2014). Swinnen first engaged people in call-and-response sessions, later encouraging their direct participation (i.e., getting involved with others at the center). Swinnen, like Glazner, capitalized on the social/emotional aspects of people with dementia, arguing that artistic interventions, such as learning to recite poetry, generated new kinds of interpersonal exchange. Poems served as collaborative stimulation, giving those with dementia a way to access, and then share, emotion. Glazner’s (2014) research already had shown that poetry can improve the lives of Alzheimer’s sufferers. As they developed the abilities to engage with poetry over time, so their overall condition improved. A main aim for both scholars was eliciting the subjectivity of AD subjects so easily rendered “non-people.”
Scholars such as Basting, Swinnen, and Walrath show how environmental and public health contexts shape the AD subject and how memory loss can be compensated through affects, bodily contact, and group activities rarely studied by neuroscientists. The focus now is on the body, connectivity, community—aspects mainly omitted in popular discourses. In support of such alternative contexts for the AD subject, an HBO documentary, Can We Cure Alzheimer’s? (2015), shows neuroscientist/clinician, Dr. Kenneth Kosik, working with the well-known Columbian family who possess the early-onset AD gene. Viewers are shown the unique way families treat their sick relatives, keeping them at home and providing bodily contact in caring for them, thus enabling neurons to be activated. Shifting the focus from cure to daily life would make this approach promising indeed.
An ongoing theater project in Toronto, Canada, builds on the work of Basting and Swinnen to animate not only subjects with AD but also the perspectives of careworkers in institutional space. An interdisciplinary team of health and artist-researchers developed a theatrical production Cracked: New Light on Dementia (2016) to pose playful but serious questions about the way that the highly regulated context of nursing homes confines understandings and experiences of dementia. Their dramatic interrogation, including the portrayal of a mock interrogation scene, showcases how people working in nursing homes are also trapped by restrictive policy. The creators’ humorous approach calls attention to the ways in which strict rules do not enhance so-called accountability sufficiently to justify what they disallow, that is, the fully human and at times messy experience of both work and life with AD. In the process, they “disrupt the tragedy discourse” of AD “through the ways that persons with dementia are performed,” portraying instead “a lively community of people engaging with each other, including staff member Jim, who supports them and creates space for them to be themselves” (Gray et al., 2017, p. 124). The creators are explicit about their goals, including a desired effect on the audience: “It is through theater, as an art form that attends to emotions, sense, thoughts, and actions in time and space, that aesthetic space is created to invite audience members to reflect on how their thoughts, feelings, and senses extend to actions, including representation and policy” (Gray et al., 2017, p. 122).
In all these projects, we are offered another kind of identity and a way forward for AD subjects that commercial films and popular discourses do not offer. It is now well known that the abilities to understand poetry and music remain in the AD’s subject’s brain. Scholars like Damasio and Paul Armstrong support the notion that stories, emotions, and, of course music can activate neuronal processes even when interpretation is no longer possible. They see the brain “as remarkably open to adaptation, variation and play” (Armstrong, 2003, p. 182). Believing in the adaptability of the AD brain is crucial, and it seems science is getting there. A New York Times article cited research showing that inviting AD subjects to tell stories to (and about) loved ones helped their condition, much as Swinnen had found as well (Brody, 2016). Alan Berliner’s moving film, First Cousin Once Removed (2014), showed that as language failed, his cousin could continue contact through music. Walrath’s mother also resonated to music as other communication skills failed. Meanwhile, Bille August’s 2001 film, A Song for Martin, provides an extended meditation on the role of music in AD, including its limitations.
It’s significant that most mainstream films about dementia indulge in age panic in that the focus is on loss of self and the fears this engenders. The fear highlights the centrality of individual subjectivity in Eurocentric cultures and the anxiety of losing total autonomy. AD might seem less fearsome if Western cultures were able to appreciate what is evident in many non-Western cultures—namely, a subject-in-relation, a body/self—such that affects, music, and non-verbal connection are seen as meaningful and as improving the lives of those living with AD. Dementia need not be conceptualized as suffering or threatening to the economic livelihood of the nation.
For the purposes of this article, we have come to define the self as brain–mind–body all working together. These constitute the subject. Further, just because “mind” cannot be scientifically located does not mean that we cannot include it. We experience consciousness; unconsciousness is implied by dreams and verbal slips; emotions preoccupy us daily. Hence, consciousness is “real” despite science still finding that reality impossible to demonstrate physically in the brain.
If readers accept the definition of “self” as the collaborative interchange within brain–mind–body, then, in a sense, one cannot “lose” one’s self. It is true that parts of the self can be lost (some brain functioning, obviously, in the case of AD), but the brain remains plastic and adaptable and, as we saw with Dana Walrath’s Alice, very much still working, if in its own unique way. In addition, if we follow Damasio in understanding the body as the foundation of the conscious mind and understand that the most stable aspects of the body are represented in the brain, then more may be going on in the AD brain than is usually acknowledged. This is especially likely if the body is activated (as in projects like those Swinnen and Basting organize). Bodily activation should get neurons firing in the brain, which in turn activates emotion. Thus, arguably the bodily part of the self remains if only caregivers allow it a chance to be active.
Much data has been accumulated over the years—for the reasonably well-off—regarding facilities for long-term care, but new data is now needed so as to see how far the culture of care in the United States is indeed changing. Dealing with aspects of race, gender, and class in regard to such facilities, as well as gender/age cultural bias, is a challenge that urgently needs to be addressed in future research.
Links to Digital Materials
For more on Glazner’s work, and the Alzheimer’s Poetry Project, see https://www.pbs.org/newshour/show/poetry-project-helps-dementia-patients-live-in-the-moment/.
For details of articles discussing negative reporting of nursing home care, see https://www.nytimes.com/2017/01/27/health/nursing-home-regulations.html/.
See for work on the neuroscience of AD, see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738403/ and https://scholar.google.com/scholar?q=Neuroscience+of+Alzheimer%27s%26hl=en%26as_sdt=0%26as_vis=1%26oi=scholart.
The various Alzheimer’s organizations have plentiful information of varied kinds, see https://www.alz.org/ or https://alzfdn.org/?gclid=EAIaIQobChMI0q241qqr2wIVwR6GCh3CQARfEAAYAyAAEgKfb_D_BwE.
For humanities perspectives, see http://www.ageculturehumanities.org/WP/
Age Panic and Dementia
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Care and Media Discourses
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(1.) “Brain” is here defined as the physical synapses and electricity linking the different parts of the brain in a network of connections that form its “flesh”; “mind,” following Antonio Damasio, is defined as emotions, consciousness, the unconscious, memory; “body,” as the organism with flesh and bones.