Culture, Medicine, and Psychiatry

, Volume 41, Issue 2, pp 284–303

Engaging with Dementia: Moral Experiments in Art and Friendship

Original Paper

Abstract

The box-office as well as critical success of the 2014 major motion picture Still Alice, starring Julianne Moore in the title role and based on the bestselling novel of the same name by the Harvard-trained neuroscientist Lisa Genova (Still Alice. Simon & Schuster, New York, 2009), marked an important moment in public cultural representations of people with dementia. Still Alice tells the story of Alice Howland, an eminent scientist whose increasing memory lapses are eventually diagnosed as early-onset Alzheimer’s, and chronicles the transformations in her family relationships as her husband and three children respond to her decline in different ways. Alice’s husband, her son, and her older daughter all respond by turning toward science, while her younger daughter Lydia seeks to engage her mother as she is now, and turns toward art and relationships. Taking Still Alice and the figure of Lydia as an entry point, I discuss arts-focused efforts to improve the lives of people with dementia, and draw upon ongoing interview-based research on the topic of dementia and friendship, to offer an account of some of the ways that people I have spoken with are actively experimenting with art and with relationships in the face of dementia. I argue that these efforts can be understood as “moral experiements,” in the sense articulated by Cheryl Mattingly (Moral Laboratories: Family Peril and the Struggle for a Good Life. University of California Press, Berkeley, 2014). Although Lydia is a fictional character, her response to Alice’s dementia points toward the kinds of moral experimentation that are in fact possible, and quietly being practiced, by ordinary people every day.

Keywords

Dementia Art Friendship Ethnography 

Introduction

The box-office as well as critical success of the 2014 major motion picture Still Alice, starring Julianne Moore in the title role and based on the bestselling novel of the same name by the Harvard-trained neuroscientist Lisa Genova (Genova 2009), marked an important moment in public cultural representations of people with dementia. Still Alice tells the story of Alice Howland, an eminent scientist whose increasing memory lapses are eventually diagnosed as early-onset Alzheimer’s, and chronicles the transformations in her family relationships as her husband and three children respond to her decline—and as Alice herself reevaluates what really matters.

Still Alice stands out as a subtle and compassionate portrayal of dementia, partly by contrast with the many other portrayals that so severely lack either subtlety or compassion. The political scientist Susan Behuniak has argued persuasively that the role of biomedicine in stigmatizing Alzheimer’s Disease has been exaggerated, and that strong negative emotional responses are also buttressed by the social construction of people with Alzheimer’s as zombies in popular media (Behuniak 2011). Gerontologists Amir Cohen-Shalev and Esther-Lee Marcus note that “until recently, the dominant story told [by the motion picture industry] about people with memory loss is one in which their speech is deemed meaningless, their memory defected and their sense of self lost” (2012:92); even sympathetic portrayals “are usually more preoccupied with the selfhood of the figures surrounding the character with dementia, rather than on those suffering from it” (2012:74).

Literary scholar Sarah Falcus, writing about Genova’s novel, argues that Still Alice challenges ‘loss of self’ narratives, by relating the onset of Alzheimer’s from Alice’s point of view, and ensuring that she:

is located within a familial and social context with which the reader is quickly familiar [so] that Alice is always, even as her illness becomes severe, recognised by the reader and interpellated as Alice. The intimate experience of Alice’s emotional, physical and intellectual states encourages the reader to construct and reconstruct Alice so that she remains not static, but still Alice…. This readerly relationality is not dissimilar to the way we see key members of Alice’s family, particularly her daughter Lydia, find ways to communicate with Alice and allow her to exercise narrative agency. The novel therefore offers a vision of subjectivity that is not coherent or stable—and indeed may be contradictory—but that can offer agency and recognition in the face of Alzheimer’s. (Falcus 2014:92)

What the novel offers, in other words, is a depiction of the daily interactions and practices through which Alice’s life with dementia “is being related, being in relation, and so being …held in connection, and being made part of, and so sharing in, a collective and the practices that carry it” (Moser 2011:714). In this manner, Still Alice may powerfully convey the insight that many scholars have articulated in other terms: that personhood is not a property of individuals alone, but rather is a collective accomplishment, created in and through relationships as these are lived out in everyday life (Lindeman 2014; Moser 2011).

This perspective runs counter to the powerful tendency to turn toward science for guidance. In the novel, Alice’s husband John and two of their three children, when confronted with her decline, all respond by seeking comfort, hope and control over the future in the promise of medical progress. John reorients his research toward Alzheimer’s disease, and throws himself into his work. Their son Tom asks about second opinions, patterns of genetic inheritance, and clinical trials, and expresses confidence that, “there’ll probably be a cure by the time any of our kids would need it” (109). He and oldest daughter Anna, who is already married and seeking to conceive a child, both choose to be tested for the genetic variant that Alice carries (which, in the novel, has an autosomal-dominant pattern of expression, meaning that anyone who carries it will certainly develop early-onset Alzheimer’s disease). Tom tests negative for the variant, but Anna tests positive. She resolves, however, to go ahead with in vitro fertilization, using preimplantation genetic diagnosis to screen out any embryos that might carry the gene associated with the disease, so that even if she herself cannot avoid the condition she will not pass it on.

Alice’s youngest daughter Lydia, however, responds differently: she chooses not be tested, and her questions focus less on what science can promise for the future than on what treatments are available for Alice, and what it feels like for her to experience dementia. It is Lydia who seeks to engage with her mother as she is now, and to understand dementia as a human condition, and is willing to approach her own life “as improvisatory art,” to use Mary Catherine Bateson’s phrase (2001:2). In the face of changing circumstances, she reorients her life and plans, eventually moving back home to live with her mother and care for her, while also finding new ways to continue to pursue her passion for theater. In the final scene, Lydia asks Alice to respond to her reading of a passage from the play she is rehearsing—knowing that her mother, for all her losses, continues to grasp essential elements of human interaction, and in this sense remains an acute judge of human emotions, and thus of her art as an actress. In the process, Lydia offers an alternative model of how one can respond to the onset of dementia: she turns not to science but to art and relationships, as interrelated forms of creative “persistent tinkering” (Mol et al. 2010:14), experimenting with how to best continue to connect and to live together as fully and well as possible in the presence of dementia.

The figure of Lydia in Still Alice is a fictional character, but we know that images and imaginings presented in art can both reflect and shape the social world within which they emerge—and indeed, the view that art can have real positive impacts in the world is central to the character of Lydia and her place in the story. In what follows, I discuss arts-focused efforts to improve the lives of people with dementia, describing some taking place in the city of Seattle where I live, and draw upon ongoing interview-based research on the topic of dementia and friendship, to offer an account of some of the ways that ordinary people in their everyday lives are actively experimenting with art and with relationships in the face of dementia. I shall argue that these can be understood as “moral experiments,” in the sense articulated by Mattingly (2014). Although Lydia is a fictional character, there are real-life Lydias all around us, quietly but creatively trying to make life better, with and for the particular real-life Alice Howlands—the large and growing numbers of older adults with dementia—about whom they care.

Dementia, Art, and Moral Experiments

As a story about the devastating cognitive decline of a brilliant scientist, and in its depiction of John’s, Tom’s and Anna’s responses, Still Alice exemplifies two types of tragic narratives about dementia identified by Anne Davis Basting:

Dementia is associated with two types of tragic story. First, there is the one in which dementia is represented as a calamity that can only be eliminated if scientists are given enough time and money to find the cure. Second is the tale of the loss of an accomplished, inspiring person, a person slowly emptied out by a devastating illness. (2009:33)

Both types of tragic story depart from what Moser (2011) has described as a “somaticizing” notion: dementia is understood “as an incurable, progressive brain disease, a matter of neural processes and interactions alone, which is bounded and contained in the individual brain and body” (2011:710). Because medical science has not yet succeeded in developing effective interventions to prevent or cure it, there is “nothing to be done” for the person affected now—and therefore all one can do is invest in further research in hopes of a future cure. Ingunn Moser describes the dominant medical stance toward dementia thus:

The therapeutic prospects are understood to be grim… Attempts can be made to control and alleviate symptoms through medication, but… the effect is quite uncertain. There is, thus, little [more] to do other than letting nature take its course. There is nothing to be done, goes the saying. (2011:710)

For people already affected by dementia today, and for those who care about them, this “nothing-to-be-done” vision offers little hope and little guidance for how to live as fully and as well as possible for the time that remains.
There is, however, also a public cultural context for the alternative vision represented in Still Alice by the figure of Lydia and her response. Though tragic narratives continue to dominate public cultural representations and discussions of dementia, Basting contends that it is possible to tell and share other stories, and the arts have a particularly critical role to play:

The arts provide a way to open those avenues for meaning-making between people who cannot communicate through traditional, rational language. Music and songwriting, dance, nonlinear storytelling, poetry, open conversation, painting, sculpting, responding to art: all of these give us ways to connect with each other, express who we are and what we believe. They can help put meaning back into what we fear are meaningless lives. (2009:164)

Basting, herself a leading figure in the development of arts-focused programs for people with dementia, describes approaches that engage a variety of different art forms: storytelling, poetry, painting, dance, theater, songwriting (Basting 2009). Other efforts involve, for example, writing (de Medeiros et al. 2007), photography (Killick and Allan 2011), clowning (Hendriks 2012), and more. Programs developed by Basting have included the TimeSlips Creative Storytelling Project (Basting 2009:94) and more recently the Penelope Project, a community-based, interactive, live theater reimagining of Homer’s Odyssey developed by residents of a Milwaukee nursing home together with volunteers, staff, university students, and theater artists (Basting et al. 2016). The vision that animates Basting’s efforts, of art as an experiment in creating both meaning and community for people living with dementia, has been enormously influential—a positive impact recognized by the MacArthur Foundation, which in 2016 selected her as a MacArthur Fellow (in other words, a recipient of what is colloquially known as a “genius award”) (MacArthur Foundation 2017).

In the city of Seattle, where I live, such efforts have blossomed over the past decade. They include Elderwise, a local organization that runs an adult day center with a strong emphasis on cultural enrichment, especially through art-making activities (Elderwise 2016). Other arts programming around town, much of it gathered together under the umbrella of “Momentia” (Momentia Seattle 2016), includes the Frye Museum’s “Meet Me at the Movies” series, featuring a program of short film clips, carefully selected to be vivid and engaging and to require little ability to follow a story. At one recent showing that I attended, several short film clips on the theme of “Autumn” were shown: Gene Kelly singing in the rain, Lucille Ball stomping grapes in Italy, Julia Child carving and stuffing a turkey, and more. After each clip, audience members were invited to share stories or opinons on weather, grapes and wine, cooking, and other topics related to the film clips (Frye Museum 2017). Organizations not specifically focused on dementia have also become part of this mix; in October 2016 I was one of four scientists engaged in research relevant to the theme of “Memory and Identity” who were invited by the Infinity Box Theatre Project, which “uses the power of theater to pose questions about the human consequences of science and technology,” to collaborate with four playwrights, culminating in staged readings of short plays “examining how current research on memory or identity illuminates what it means to be human.” (Infinity Box Theatre Project 2017).

For some who participate in these programs, the experience can be transformative, and generative. Jean Raichle was living with quite advanced Alzheimer’s disease, and had never before painted at all, when she took part in an art program offered by the Frye Museum in collaboration with Elderwise. Her daughter, Marilyn Raichle, was so stunned by the beauty of the art that Jean created, and so deeply affected by this revelation of altogether unlooked-for joy and creativity, that eventually, together with others, she developed an exhibit of artworks by people with dementia. “The Artist Within” debuted in early 2016 at Seattle’s Harborview Medical Center, later showed at Seattle City Hall, and as of this writing is currently on view at the University of Washington’s School of Social Work (Wanucha 2016).

For other people who take part in arts programming, it may figure as one among a variety of approaches to be tried out, in the course of improvising new forms of social life given the new reality with which dementia has confronted them. Ellen, who lives in Chicago, spoke to me about her husband’s decline and death due to early-onset Alzheimer’s:

I took early retirement; and then I stayed home with James. My daughter was done with college, she was working part-time, she was still living at home; so she was helping out. I actually got James involved in—it’s called Culture Buffs—where they would go … once a week they would go do kind of a cultural thing [like a museum or something or a concert] So it gave him a little bit of a respite from me and vice versa; and these people were trained to work with people with dementia. And I got my other friends involved, and they all went; so it was kind of like something the guys could do without girls. And I also got him in a couple art classes. They had an art school in [a nearby town] for people with dementia. They kind of set up a little program for them. So because he could still do a lot of things, we did a lot of things.

Viewed thus in the context of participants’ lives, such experiments in art come clearly into view as, above all, social and moral experiments. As Cheryl Mattingly has argued, devastating and unforeseen events present people with moral challenges. Mattingly calls such situations “moral laboratories,” to highlight the way that people striving to do the right thing, in circumstances where it often is unclear, become “researchers and experimenters of their own lives,” experimenting with different ways to sustain the moral values, selves, and relationships that they hold most dear. In the process, bad luck can open paths toward developing or revealing unsuspected dimensions of familiar people and relationships:

New projects of becoming may be set in motion through the accidents of fortune. So, a chain of events… conspire to provide radically altered circumstances and set a new story in motion. Such events… demand virtues not needed before. Accidents create new situations that demand new or more well-developed virtues in order to even perceive a ‘best good’ in uncharted waters” (Mattingly 2014:82).

Confronted with the onset of dementia in a person with whom one feels close, the moral challenge posed is not how to reconcile two conflicting moral goods, so much as whether or not to willingly undertake the “project of moral becoming” (Mattingly 2014:83) that may be entailed in remaining close to someone through all the unpredictable and frightening changes that lie ahead.

Such a challenge is easy enough to avoid. The ubiquitous tragic narratives of dementia chart out a clear and well-trodden path toward disengagement. Like John, Tom, and Anna in Still Alice, one can turn away, heartbroken, from the person who is now understood to be “dead, gone, no longer there, no longer a person” (Taylor 2008:322), and vest one’s hopes elsewhere. Spouses and adult children do not as readily turn away; they make up the majority of informal caregivers for older adults with dementia (Alzheimer’s Association 2014; Freedman and Spillman 2014). For friends, neighbors, former coworkers and other social connections, however, turning away from someone after dementia sets in may be considered quite blameless. Indeed, the discourse of “successful aging” arguably even endows such a response with the positive moral valence of doing what is healthy; social interaction with people who are unimpaired, and thus more stimulating company, may seem better suited to contribute to one’s own efforts to age in good health and free of impairments (Taylor 2017).

And yet, there are those who, like Lydia, do not turn away from the person with dementia, but instead take on the moral challenge of staying with a cared-for person after the onset of dementia. In doing so they move onto the less well-charted and more arduous path of remaining involved with someone as they move through the unavoidable changes that dementia will bring. One cannot know in advance how dementia will affect the other person, how quickly they will decline, how differently the person with dementia may feel and act, how the relationship will change, nor how one will feel about and react to all of this. The moral challenge that this presents is not a dilemma, exactly—not a choice between two goods—so much as a deeply challenging project of becoming that “requires a change in perception itself, a re-envisioning of the situations one faces and of oneself” (Mattingly 2014:83). Mattingly writes:

The moral vocabulary surrounding friendship in the context of family life, particularly as developed by [the philosopher Stanley] Cavell, provides an immensely illuminating window in which to explore the social dimensions of care and its demands for moral transformation… [Cavell] explores moral transfomation as an intimate interpersonal task, one that requires the assistance of significant others with whom one has a serious and committed bond ….everyday life [is] characterized by its transcendent potentialities. Friendship is necessary for realizing these potentialities, Cavell insists. Transformative work takes self-reflection and self-critique, and friends provide an essential ressource for this. (Mattingly 2014:90)

Seen in this light, programs that involve people with dementia and others who care about them in the making and appreciation of the arts are, above all, experiments in finding new venues and ways to facilitate social connection, inclusion, and enjoyment. They invite people to respond to the onset of dementia by undertaking, courageously and with joy, experiments in friendship.

Experiments in Friendship

Seeking to better understand how people rise to the moral challenge posed by the onset of dementia, I am engaged in ongoing interview-based research on the topic of friendship and dementia. I have also interviewed some family members and health professionals (geriatricians and geriatric social workers) about their experiences and observations concerning friendships in the lives of people with dementia, but my primary focus has been on finding and interviewing people who self-identify as friends of someone with dementia who are (in whatever way) trying to keep up the friendship. The Fetzer Institute, which funded this research in its early phases, employs the term “exemplar,” to describe people, programs, or institutions who exemplify positive values. Leading up to the award, the Fetzer Institute asked me to “describe the exemplar of love, compassion and forgiveness in my field,” and explain how my work would “hold it up for display and reflection.” This prompt, utterly unlike any academic application essay question I had ever encountered, delighted me; it invites one to envision ethnographic research as a project of documenting ordinary people’s efforts to do what they believe is right, and “holding them up for display and reflection,” an approach that resonates with recent calls for an anthropology of the good (Robbins 2013), or an anthropology of ethics (Fassin 2008). With these thoughts in mind, I have borrowed the Fetzer Institute’s language, and refer to the individuals I have interviewed as “exemplary friends,” in that they exemplify a response of turning toward a person with dementia, and taking on the moral challenge that this presents.

As of this writing, I have spoken with fourteen exemplary friends, eight family members, and four health professionals; most have been in the U.S., one in the U.K., and one in the Netherlands. I found my way to these people through personal connections, through referrals from health care professionals, and through postings on Craigslist, Facebook, and Nextdoor. Some of these interviews were conducted in person and some by phone; with permission (and following research protocols approved by the University of Washington’s Human Subjects Division), all have been recorded and transcribed. These interviews do not by any means capture the full range of perspectives and experiences on friendship and dementia; approximately 75% of the subjects interviewed thus far have been women, most themselves over the age of 65, and relatively financially comfortable. These interviews do nonetheless bring to light lines of inquiry that richly deserve further exploration, and I hope that further research will follow. Like a small melted patch on a large window thickly frosted with ice, the experiences and perspectives of the people with whom I have spoken thus far offer a very partial but compelling view of the vastness beyond that remains to be explored. In what follows, I draw on these interviews to describe a range of different ways in which people engage in experiments in friendship.

At the most basic level, keeping up relations of friendship in the face of the changes wrought by dementia entails a fundamentally moral commitment—not only to the friend, but to a sense of oneself as realized in and through these relationships. Esther, age 83, reflected on her continued involvement with several friends who have developed dementia:

I want to see them as long as I can. … I do it for me. I do it for them too, but I really—it’s really important to me. Friendship has always been such an important part of my life.

The individuals I have interviewed for this research have already made this fundamental commitment, or they would not have chosen to speak with me; each has self-identified as a friend of someone who has dementia. Yet many voice a keen awareness that most others do not remain thus engaged, but retreat and turn away when faced with the disturbances that dementia introduces into relations of friendship. Carol and Glennis, exemplary friends to two different women, each expressed to me their sadness at seeing how others have responded:

Carol: Every time I go East I go with Alan [her friend’s husband] and visit her. And I’ve learned that almost no one—including the colleagues of hers—makes the 40 minute drive or whatever to go visit her. Everybody has kind of almost written her out. So even though I’m in some ways her furthest away friend, aside from her husband who actually goes every single day to feed her lunch, I think I’m almost the only person that goes to visit.

Glennis: I think it has bothered me to a degree how few people– We here have a pretty good-sized laboratory [in the hospital, where Jacqueline worked for decades]. And she had friends there; and I think it’s odd that only one other person has stepped forward. But she’s worked with a lot of different people over time; and they’ll ask me about her. People want to know about her, but as far as making an effort to do anything with her—no. Which I think is kind of interesting. And I don’t know what to make of it.

It is thus with a consciousness of doing something unusual, something most people avoid, that Carol, Glennis, and others I have interviewed work to find and develop ways of continuing to connect with and include friends who are living with dementia. As Cheryl Mattingly has argued of the families with whom she has worked, who confront serious challenges on multiple fronts simultaneously, so too for friendships in the face of dementia,

Success is always against the odds… everyday rituals and routines not only demand planning, learning, and reinvention as new situations arise, they embody the qualities of a precarious enterprise in which the everyday is not so much transgressed as taken up in new ways (Mattingly 2014:78)

Modeling, Teaching, and Coaching

Janet, a young mother who lives in a small town in Eastern Washington, plays tennis each week at a club near her home. When she realized that Sue, an acquaintance with whom she played, was caregiver for her husband who had dementia, Janet reached out with an offer to help:

I could tell that she seemed like she needed some help; and so I said, “What do you need?” And I realized that she was the primary caregiver for him, without any type of help or experience at all. And then so I just said, “How about if I come over for a few hours a week and visit?” So his name is Kurt. And she kind of broke out into tears and just said, “I’ve never had anyone offer to do that before.” And so over the last year or so I’ve been doing that at least once a week for three or four hours.

For Janet, this engagement reflects an appreciation, grounded in her own previous illness experiences, of everyday life and its pleasures, as matters not to be taken for granted:

I also have battled Stage 4 cancer, I was diagnosed terminal five years ago. And I’m healthy right now and on the tennis court. But I’ve seen—I spent years in the hospital and separated from my family; and I saw the effects that it can have; and I saw people that did maybe seemingly small or uncharacteristic things that they felt maybe like they should do to help. It really blessed my family. So I just try to do that.

From the time that she has spent with Kurt, Janet has learned ways of interacting with him that seem to work well, and she now makes it her task to model these, and teach them to others.

I figured him out, that I know when he is frustrated that we change directions and I don’t press him—I just learned what works and what doesn’t, and so we just have a fun time together. For some reason, it’s natural to me; and I don’t think about it a lot. I don’t find it scary…What is hard though is most of her other friends—like we’re in a group of probably sixteen ladies, and they do find it awkward. They don’t know how to respond. And they’ll stand beside me completely mute; and then we’ll walk off court and go outside, and they’ll say, “How do you feel comfortable there?” [laughs] And I’m thinking, “How are you not?” Yeah, because it’s a social group that all envelops her, but they definitely don’t know what to do with him. Like she just had a New Year’s Eve party, Sue and Kurt; and I just watched Kurt kind of by himself in a corner, except for when I visited. It makes me a little sad. So I’ve tried to kind of like model what I would think would be best, because he responds so beautifully to interaction.

Note that Janet’s deliberate practice of friendship does not only involve her direct interactions with Kurt and Sue. Janet also sees herself as working to change the social world they all inhabit, by showing other people—people whose tendency is to shun and exclude Kurt—how they can and should interact with him. She is, in her own words, “modeling what she thinks would be best.”
Similarly, Lance, who spoke with me from his home near Leicester via Skype, described explicitly instructing his friends and acquaintances that they must include his wife Melanie in conversations, although she has dementia, and telling them exactly how to do so:

…I say to them, “If [Melanie and I] are together, try and avoid talking to me as if she’s not there. Don’t expect her to answer, but do look at her. The natural thing is to just engage me. What I must do, you must do, we must occasionally involve her, and she will respond. She has an intuitive understanding, we need to bring her in.”

In the years since his wife developed dementia, Lance has gained a great deal of practical knowledge about Melanie’s condition, and what tends to “work.” Such learning is common among patients and caregivers; Lance is perhaps unusual, however, in the degree to which he is able and willing to transform tacit knowledge into relatively explicit formulations that can more readily be shared (cf. Moser 2010; Pols 2014). These days, he makes a point of communicating that hard-won practical knowledge to others, as part of his effort to make sure that Melanie is included socially. Describing an interaction that took place at a Speakers Club function (a speechmaking club, similar to Toastmasters in the U.S.), Lance said:

…This one lady who came over to talk with us, she had this sort of anxious look on her face, I think that Melanie’s dementia made her very uncomfortable, and so her face was all kind of twisted up. And Melanie may not understand the reasons behind that anxiety, but she does respond to that feeling, that expression, and she mirrors it. And then she can get quite agitated. So I coached this lady, “when you come over to her, have a smile on your face, and speak to her in a warm and friendly voice, and she will mirror what she sees in you. That is how she will respond.”

Beyond teaching and modeling such practices, Lance and others sometimes consciously intervene to press for the continued inclusion of the person with dementia in social occasions and gatherings where they might once have fit in without effort. Lance said:

I insist on going to the Speakers Club, and I asked to bring her with, and I’ve been doing that for 18 months. They don’t object. They don’t necessarily involve us in conversations, though, we tend to sit alone. I don’t resent it. People like me [i.e., caregivers] can easily say they are offended, and not go anymore; the general tendency is to not mix. It’s hard work, and possibly upsetting to the people you mix with. Personally, I know that it’s not nice for them to mix with us, but they will—because I insist on it. I’ve got to do it. I insist on going to the Speakers Club, and the symphony… We go to functions with the company I used to work for, we will sit at the golf club having a beautiful meal and conversation, and I will try to get people to make eye contact with her.

Lance is well aware that his insistent inclusion of Melanie in group social activities creates social discomfort for others, but he is willing to accept that; it is a form of moral as well as social experimentation in which he is engaged, and much is at stake. Caring for Melanie has transformed Lance, and involved him in a struggle to sustain her in social personhood (Lindemann 2014:3) which requires that he seek to disrupt and transform some of the default patterns of interaction in the social groups with which he is involved.

Sitting Them All Down

Patricia, whom I interviewed by phone from her home in Northern California, spoke of her desperation at striving to keep her busy and active life going as her husband progressively declined into dementia. She too focused on the kind of experimental intervention that she herself could make into her own social world, in an effort to improve her life and that of her husband by strengthening his connections with friends. She said:

We have so many friends, so many people…. But nobody ever calls him. I’m almost to the point of writing an email, or calling them or something and just saying, “If you guys could maybe just once a month ask Harold … each one of you, maybe once a month, or … just so he could get out once a week with a different person and play [golf].”

While some, like Patricia, arrive at such approaches on their own, others may be helped along. Tina, a geriatric social worker whom I interviewed, described to me how she sometimes coaches spouses who are caregivers for someone with dementia, to pursue just such experimental interventions into their social circles:

The other day I was doing a consultation on the phone with a wife who only married the husband four years ago. And now he’s got pretty [much] end/middle stage Alzheimer’s; and the last four years have just been a steep downward spiral. She had no idea when she married him …And she was talking about how she was watching his friends disappear, and they were not her friends. …And she was wondering what was she going to do when they all disappeared, because she was barely hanging on herself, and if he had nobody else, that means she would be it. And she was terrified of being just the only one for him. So … we had a conversation about actually sitting them all down in a group, actually having them over for dinner, sitting them down when he wasn’t around at some point, and having a conversation about, “This is what is happening: Everybody get on the same page. This is what is going on. This is some of the stuff that he’s doing. Figure out how you are going to react to all of that.” and, “Don’t leave him. Don’t leave him. Please don’t leave him.” …And she sort of was like, “Wow … I never thought about doing something like that.”

“Sitting them all down” constitutes an intervention on several levels. First, it puts the problem of dementia on the table as an explicit topic of conversation, when it may previously have been avoided and gone unmentioned. Second, it forces a moment of deliberate reflection and decisionmaking, in relations of friendship that are often understood to be both spontaneous and voluntaristic. Third, it reframes friendships that may have been conceptualized to be discrete dyadic one-on-one relationships with the person living with dementia, positioning friends as part of a broader collectivity that includes other friends whom they may not already know, as well as spouses or other family members.

Speaking the Bad Thing

What is at stake in these moral experiments is social personhood; to succeed, therefore, requires mounting a collective (and not only individual) response. As the previous examples suggest, the necessary first step toward involving people in such an experiment is talk. Dementia must be brought into conversation, it must be made speakable. Spouses and family caregivers are often acutely aware of how reluctant the friends and acquaintances of the person with dementia may be, to admit the topic into conversation. Lynn, a divorced mother in her fifties who now lives with and cares for her own mother, reflected:

…I think aging and dementia are uncomfortable topics, like illness of any kind is. I think it happens when people have cancer, that their casual friends, and even maybe their close friends, can’t tolerate seeing you in that state. You’re not the person that you were. I think there’s some similarities there.….What do you do about the bad thing that you can’t—I mean I think it’s like, that’s the “it” in the room, really. As if there were something you need to do about it. You don’t need to do anything about somebody else’s bad thing, but to acknowledge it… [But] now that you’ve said those words, it’s like what do we do with it? I have to do something with “it.” And it’s like, “Ah! I can’t. I gotta go now.” [Laughs] And it just—the subject is dropped. You know, you move on. It becomes a kind of, a non-issue, or something that’s not discussed. Not reviewed. And I think it comes out of everyone’s discomfort with having that conversation.

The fact that they self-identify as a friend of someone living with dementia makes the individuals I have interviewed for this research somewhat unusual, I believe. When I began interviewing people about their experience with the onset of dementia in a friend, one detail that caught me by surprise was how prominently their stories feature talk among friends about other friends who are not present—gossip, if you will. Gossip is, as Niko Besnier has noted, “a form of interaction that in most societies variously provokes scorn, derision, and contempt,” but it is also an activity that many people find intensely interesting and pleasurable, and it can have significant social and political consequences. “Confined to the intimacy of domestic contexts,” he writes, “gossip can nevertheless have a long reach, affect important events, and determine biographies. Through gossip, people make sense of what surrounds them, interpreting events, people, and the dynamics of history” (Besnier 2009:3). One of the other things people sometimes can do through gossip, I suggest, is engage in what the philosopher Hilde Lindemann calls “holding the individual in personhood” in other words “the social practice of personal identities” (Lindemann 2014:3). Such talk often figures as part of the process by which the reality of dementia becomes established as a problem to be acknowledged and addressed collectively.

Debbie first noticed, during a camping trip, that her friend Ellen was repeating herself in conversation and having difficulty playing familiar card games and completing some quite basic tasks. Immediately upon returning home, she reached out to another mutual friend:

I talked to my dear friend Teresa who lives in Colorado…. She saw [Ellen and her husband] last winter, but very briefly; and she said she didn’t notice anything. I said, “Teresa, I got to talk with you about something. I didn’t want to email you, because I just wanted to get your reaction.” And I just told her what I told you about the visit with them.

Once the presence of dementia is established as a shared understanding, talk among friends centers on establishing a shared sense of how the condition is progressing. Lorraine, speaking of her friend Harry, describes talking about him regularly with other mutual friends in their social circle:

We take care of him… Oh, yes, we’re all aware of it. Yes. We all talk—oh, we talk about it. Oh, yes, everybody sort of compares notes on how Harry’s doing, what he’s doing.

Note that in Lorraine’s framing, talk about the mutual friend with dementia is explicitly linked to collective efforts to care for him. Making dementia speakable can also make it something that the group tries to do something about.

A Team of Us Managing

The most striking example of such collective efforts that I have come across thus far, concerns the network of friends and acquaintances who together have organized themselves to take care of Jacqueline, a woman who immigrated to Seattle from Hong Kong several decades ago, and lived in an apartment with her mother until her mother’s death about eight years ago. For all the years they lived together, Jacqueline’s mother did all the cooking, took care of all the finances, and even sewed all of Jacqueline’s clothes, while Jacqueline went to work each day as a laboratory technician in a hospital. Jacqueline retired at around the same time her mother died. By then, she had developed dementia, and was struggling to handle the practical matters that had always been handled for her. Glennis, an administrator at the hospital where Jacqueline used to work, told me how she had gotten involved in helping her out. It began with talk:

We go to the same church, and another lady from [the hospital where I work] observed Jacqueline at church crying one day and approached her; and Jacqueline told her how she was worried about her memory and her financial situation. So this lady who is a physician at [the hospital] contacted me and said, “Jacqueline works in the lab [at the hospital]; you must know her. Could you help me with her and see if she’s willing to trust you and help with her concerns?” I said, “OK, I would do that.” I felt like I could do that; so that was the beginning of our connection with her.

Janelle: Oh, OK, so it wasn’t like you had known her and done stuff together…

Glennis: I knew her, but I never did anything socially with her or any activities other than lab activities… I just asked her if she wanted me to help her. And she said, “Yes.”… And I don’t know why still to this day why she trusts me to the degree she does. But she does, because she’s fortunately, thank God, pretty cautious otherwise.

As with Janet and Kurt, so in this case too, it was the presence of dementia that drew Glennis into greater involvement with someone she had in fact not known all that well before. She explained to me how she and several other women who knew Jacqueline from various contexts (from church, from a hiking club, and from work) together stepped in to organize things for Jacqueline. They organized her finances, found an attorney who was Chinese (like Jacqueline) and good at working with the elderly, and whom Jacqueline trusted, and they chipped in together to pay him to set up the paperwork that Jacqueline needed to have in order. They also arranged for a caregiver to come every day to the apartment where Jacqueline lives alone, to help her clean up, make her lunch, and give her her medications. They set up an online calendar system so that they can keep track of who is planning to do what with Jacqueline when, and they communicate with each other via e-mail. One takes primary charge of Jacqueline’s medical appointments, another takes primary care of her finances, and they all arrange to take Jacqueline on social outings. Glennis says:

I’m really amazed how much Sally does. She does far more than I do. We both work together. But we’re the primaries, and we have this policeman out there that helps. We have a neighbor across the hall—a couple of gay men—who kind of watch after her to some degree, we communicate with them, but [they’re] not totally committed. And then there’s three other ladies that do things with her, like take her on walks or take her to the theatre. One lady helped us a lot with getting new glasses. So it’s probably a team of about six of us that are managing it. Yeah. …But I’m the one that gets the calls when the caregivers can’t find her.

Developing and sustaining these arrangements has been challenging, in part because friendships are not as readily legible to the state as kinship relations or business transactions (Muraco and Frederiksen-Goldsen 2011), and this can make them fragile and perilous:

Sally actually pays her bills and keeps track of all of her finances, makes sure she has money… That’s been a real hassle too. She once had a bad experience because … she had some conversation with one bank that caused an alarm to go to the Adult Protection group. And so then they start investigating, and then she got really psyched out about that. That hurt her a great deal; and she kind of wanted to back off and not do as much. …Sally was reported to the Adult Protection Service, and then there was a police sergeant or someone that got involved in that investigation too…And what has happened now: the attorney told us that—you’ll laugh at this—Jacqueline should just hire someone to pay her bills, and then everything would be OK. And we did try to get different individuals who do this—we couldn’t find a firm that would do it for her. So Sally’s willing to do it; and she’s charging Jacqueline 35 cents an hour to manage her finances. That’s why I say you’d laugh! That makes it legal. Having some money change hands.

This “team” of friends and the role they have taken in caring for and supporting an individual with dementia is, I suspect, quite unusual. It remains instructive, however, as an example of what can be possible, and a counterexample to disprove claims or assumptions that posit isolation as an inevitable consequence of dementia. Glennis, Sally and the others have, with no fanfare at all, experimentally developed a collective response to Jacqueline’s dementia—one that supports her practical needs and sustains her within a social embrace.

And perhaps such responses are not really so unusual after all? The small but intriguing scholarly literature on friends and other non-kin as caregivers consistently finds that a considerable minority of older adults who need informal care receive it from friends, neighbors or others (Barker 2002; Nocon and Pearson 2000; Lapierre and Keating 2013). And a team of palliative care researchers in Australia, which recently carried out a randomized population health survey to find out who actually provides care at the end of life, discovered a “substantial network of caregivers who are mainly invisible to the health team,” of whom the majority were not kin but neighbors, friends, and other relations (Burns et al. 2013). Perhaps the circle of friends caring for Jacqueline in Seattle is an example of what the anthropologist David Graeber calls “the communism of everyday social relations,” already in existence all around us. Communism, he argues,

… is not some magical utopia, and neither does it have anything to do with ownership of the means of production. It is something that exists right now—that exists, to some degree, in any human society, although there has never been one in which everything has been organized in that way, and it would be difficult to imagine how there could be. All of us act like communists a good deal of the time. None of us acts like a communist consistently… In fact, communism is the foundation of all human sociability. It is what makes society possible…. (Graeber 2011:95)

The responses that the onset of dementia has drawn from these exemplary friends are, perhaps, best understood as illustrating the surprising truth that Rebecca Solnit documents in A Paradise Built in Hell: that people in fact regularly do respond to disaster with exhilaration at the opportunity to reach out to others and meet their needs.

Two things matter most about these ephemeral moments [when disaster disrupts existing orders]. First, they demonstrate what is possible or, perhaps more accurately, latent: the resilience and generosity of those around us and their ability to improvise another kind of society. Second, they demonstrate how deeply most of us desire connection, participation, altruism, and purposefulness. Thus the startling joy in disasters…comes, when it comes, from that purposefulness, the immersion in service and survival, and from an affection that is not private and personal but civic: the love of strangers for each other, of a citizen for his or her city, of belonging to a greater whole, of doing the work that matters (2009:306)

Butterflies and Cocoons

The possibility that dementia might be met collectively and with love and joy resonates strongly with the message that Alice Howland herself delivers in a one of the key scenes of Still Alice. Long after her diagnosis, when the progress of her dementia has rendered writing and public speaking enormously challenging, Alice delivers a speech to an audience at an Alzheimer’s convention. In it, she speaks as part of the “we” of people who have Alzheimer’s, and addresses the plural “you” of family members, clinicians, scientists, and members of the general public. She says:

Look us in the eye, talk directly to us. Don’t panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses. I encourage you to empower us, not limit us….Work with us. Help us develop tools to function around our losses… (Genova 2009:253)

Lorraine, whom we heard from briefly above, described to me how her circle of friends has adapted, so as to continue to include Harry, a member of their group who has developed dementia. As she recounted, the friends talk a great deal among themselves about what to plan and how to arrange things, with Harry’s evolving needs and limitations in mind:

…As one of the friends in Michigan said, “When Harry’s in the cocoon that we create”—this particular group creates the cocoon. We’ve been traveling together for years… and that’s the group that Harry feels comfortable in.

Through rising to meet the challenges presented by dementia, a group can make or remake itself as a moral community, and offer itself to vulnerable members as a “cocoon”—in other words, a safe place within which to undergo a transformation.
From cocoons, of course, emerge butterflies; Lorraine’s metaphor of the cocoon thus resonates interestingly with the imagery of butterflies that Genova uses throughout Still Alice. The importance of butterflies is announced visually in the book’s design: a photograph of a blue butterfly graces the cover, and a small butterfly motif appears on each page. Butterflies recur throughout the story as well: Alice owns a beautiful blue art-nouveau butterfly necklace she wears on special occasions that she received from her mother, who died in an automobile crash when Alice was young; she vividly recalls a butterfly-shaped kite flown by her friend at the beach when they were both five years old; and “Butterfly” is the name that Alice, recently diagnosed, gives to the computer file containing instructions to her future self, on how to commit suicide. In case readers might miss all this symbolism, the Reader’s Guide helpfully directs their attention toward it:

Why is her mother’s butterfly necklace so important to Alice? Is it only because she misses her mother? Does Alice feel a connection to butterflies beyond the necklace?

Genova’s answer to this question appears in a sequence in which Alice recalls a conversation with her mother:

She liked being reminded of butterflies. She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn’t mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, see, they have a beautiful life. Alice liked remembering that.

Butterflies are important in the story, then, as reminders that life can be beautiful even if it is short.

Like any metaphor, however, this one highlights some aspects of the referent (in this case, life with dementia), while hiding others. There is nothing much one can do for a butterfly, except watch it flit by, admire its beauty, and reflect on the meaning of its life. In this respect, Lorraine’s metaphor of the cocoon strikes me as much more interesting. To invoke the image of a cocoon here is not to minimize or romanticize the changes wrought by dementia, but to shift attention from the butterfly to the predicament of the caterpillar facing its imminent dissolution, and what Vladimir Nabokov, keen observer of people and lepidoptera alike, described as the “frantic search for a place to pupate (the awful pressure of metamorphosis, the aura of a disgraceful fit in a public place)” (1989:132). Lorraine and her friends feel called upon to form themselves into a cocoon, to embrace and protect Harry through these unchosen and unavoidable changes, the better to sustain his social personhood and to live up their shared moral sense of what friendship requires. This is, indeed, a moral experiment of the first order.

Conclusion

In her Academy Awards speech, when accepting the 2015 Best Actress award for performance in the role of Alice, Julianne Moore expressed the hope that the film’s sympathetic portrayal might help create positive change in the lives of people with Alzheimer’s, especially by inspiring the public to support scientific research to find a cure (Staff 2015). Genova voices a similar hope in a “call to action” addressed to readers of the novel that is posted on her website:

Through Still Alice, I hope you’ve gained a compassionate awareness for what it feels like to live with Alzheimer’s. I also hope you’ll join me in putting that compassionate awareness into action. By making a donation to Alzheimer’s research, YOU can be part of the progress that will lead to the cure. (Genova 2015)

Still Alice vividly shows, however, that donating to science is not the only form of action one can take in the face of dementia. The character of Lydia demonstrates other possibilities, as we see her take other small but crucially important actions: spending time with her mother, taking walks with her, asking Alice what she is experiencing, making arrangements to be closer and more present in her daily life, and involving Alice in her art. Lydia’s response points toward the kinds of moral experimentation that are in fact possible, and quietly being practiced, by ordinary people every day.

There is no Academy Awards ceremony for groundbreaking moral experiments, nor any Nobel Prize. But this is where ethnographers and artists alike can play a vital role, by putting our own skills to work to honor and support these forms of creative experimentation, documenting them and holding them up for all to reflect on, learn from, and admire.

Acknowledgements

For crucial conversations, introductions, comments and suggestions I extend warm thanks to Marigrace Becker, Catherine Besteman, Soo Borson, Faye Ginsburg, Iben Gjødsbøl, Lone Grøn, Sharon Kaufman, Lene Koch, Teresa Kuan, Sarah Lamb, Cheryl Mattingly, Ann O’Hare, Jeannette Pols, Lillian Prueher, Priti Ramamurthy, Rayna Rapp, Lorna Rhodes, Michael Rosenthal, Aaron Seaman, Lesley Sharp, Mette Svendsen, Lynn Thomas, and Lisa Vig. I am grateful to Melissa Liu for research assistance and to the anonymous reviewers for excellent substantive suggestions that made this article better. Above all I would like to acknowledge my gratitude to the individuals who kindly shared with me their heartfelt and thoughtful reflections on friendship and dementia.

Copyright information

© Springer Science+Business Media New York 2017

Authors and Affiliations

  1. 1.University of WashingtonSeattleUSA

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