Keeping care fully alive – An ethnography of Moving-with carers and persons living with dementia

Highlights

• Dewey's fully alive concept compels us to rethink assumptions of what constitutes “good” dementia care;

• The Moving-with program provided opportunities to explore new ways of interacting that challenge public discourse about dementia;

• Persons living with dementia are fully alive as they respond to and create moments of care with others.

Abstract

Metaphors of persons living with dementia as living dead or zombies create images of soulless bodies, consuming the lives of those around them. Such metaphors also accentuate the public fear of dementia as one of the most threatening conditions that can befall persons or their loved ones. Drawing from an ethnography on the experience of carers and persons living with dementia, the sub-study described in this article focused on specific events within Moving-with—an eight sessions movement group designed to cultivate new experiences of self with others. At the end of the last session, a carer referred to her experience of Moving-with as “some good times.” Her statement raised questions about what constituted those “good times” for that particular carer and how they came to be. Using a narrative-phenomenological approach that foregrounds the particularities of human interactions, we traced the course of a “good time,” from its creation by all the participants in a Moving-with session to how it entered into the couple's everyday life outside the sessions. A microanalysis of those significant experiences illuminates how the improvisational actions of those involved made space for others to respond in ways not solely defined by their caregiving relationship. Dewey's philosophy on aesthetics further highlights the fully alive nature of such moments and underscores how the embodied and ethical nature of care arises in the tension between past and present. Care as an experience is, thus, never fixed. Attention to those moments contributes to the ways in which we can (re)define and enact care. In other words, tracing the creation of fully alive moments and their portrayal can contribute to keeping care, itself, fully alive.

Introduction

The fourth age, as defined by Gilleard and Higgs (2010), refers to the darkest form of aging that passes “beyond any possibility of agency, human intimacy, or social exchange” regardless of age (p. 125). Fear of the fourth age has captured the social imaginary and acts as a “… ‘black hole’ that exercises a powerful gravitational pull” (p. 121–2) to all aspects of aging that give us any shred of credibility, including “pleasure in later life” (p. 123). Behuniak (2011) highlights seven characteristics used in public discourse likening persons living with dementia to zombies or the living dead. These characteristics range from how dementia is represented as a disease (e.g., epidemic proportions, cultural terror, and death preferable) to how persons living with dementia are described (e.g., appearance, loss of self, and ability to recognize others). Metaphors such as zombie and living dead also extend to how dementia consumes the lives of those surrounding them (e.g., cannibalism). Such dehumanizing metaphors invoke “fear and disgust” (p. 85) that, according to Gilleard and Higgs (2014), make dementia the epitome of the fourth age. As Feldman and Estabrooks (2017) note, dementia represents the “biggest threat” (p. e95) to healthy aging.

Research that draws upon Goffman's work on stigma and impression management underlines that persons living with dementia constantly find themselves negotiating others' assumptions about dementia (e.g., loss of capacity, memory, and even of the self) and aging (e.g., dependence, decline). To manage others' impressions, they develop and use different strategies such as employing humor, acknowledging their own deficits, and foregrounding past achievements (Beard, 2004). These strategies help them present themselves as persons contributing to their community (MacRae, 2010). Following a diagnosis, the everyday life of a person living with dementia, as Beard (2016) argues, implies that one must actively resist being relegated to the status of “demented persons” (p. 166) by creating counter narratives.

To drive social change, Bartlett (2014) notes that persons living with dementia are building a “culture of resistance” (p. 640) by connecting with one another and with people who have social capital (e.g., politicians, directors, academics). For O'Connor, Mann, and Wiersma (2018), disclosing one's diagnosis of dementia is at the “heart of these connections” (p. 51). They argue that while the act of disclosing one's diagnosis opens up a space to speak and to be recognized, persons living with dementia also run the risk of exposing themselves to possible discrimination. Still, as Beard (2017) argues, despite their efforts to share experience, structural and institutional challenges get in the way of humanizing representations of dementia as well as significant social change. As Seetharaman & Chaudhury (2020) suggest, meaningful and successful dementia-specific initiatives and policies can only result from authentic partnerships in which people in position of power value the experience of persons living with dementia.

Swaffer (2014), an activist and person living with dementia, speaks of her own experience and describes the Prescribed Disengagement ™ that comes with a diagnosis of dementia. Prescribed Disengagement ™ implies that both persons living with dementia and their family members must be ready to give up on everything they are doing. Misconception about no longer being able to contribute, as Swaffer (2014) says, “sets us up to live a life without hope or any sense of a future and destroys our sense of future well-being” (p. 3). This “myth” relegates persons living with dementia to the status of “sufferers,” and their family members, especially spouses, to that of “martyrs” who must become “full time carers” (p. 4). Heroic portrayals of carers who abandon everything to provide “total care” also run another kind of risk by setting up expectations that are often unattainable (Leibing, 2018). Such extreme depictions of carers (e.g., martyrs and heroes) do not account for the complexities and particularities of evolving experiences of care.

From a first-person, narrative-phenomenological perspective, Mattingly, 2014, Mattingly, 2018a speaks of the care of the intimate other as a kind of enduring moral commitment that comes to take a central place in our lives. This care of a significant other often bears the ethical weight “to respond, to be responsible” (2018, p.49) despite the uncertainty of the future itself. Such demands can ask one to become another kind of carer, one who is more apt at fighting disease than one capable of recognizing a fundamental human need; the presence of another. Though the care projects that Mattingly examined often take place in the context of family life, they can also lead to the creation of communities that extend to and include friends, both close as well as distal ones. Although, Taylor (2008) reflects on how “dementia seems to act as a very powerful solvent on many kinds of social ties” (p. 319), her subsequent explorations describe how “exemplary friends” (Taylor, 2017, p. 291) took on the moral challenge of engaging in care rather than turning away (see also Taylor, 2018).

Understanding care as an embodied practice does not mean the mere re-enactment of previous experiences or habits. Close attention to friendship in the context of dementia foregrounds new possibilities of sustained engagement and growth. Yet metaphors of sufferers, martyrs, heroes and, even, exemplary friends if used outside of the particularities of everyday life flatten the moral complexity and transformative potential of care. In contrast, care as an experience brings our attention to those specific moments that stand out and often become memories (Dewey, 1934; Mattingly, 2010; Mattingly & Lawlor, 2001). However, in such significant experiences the “past and present are constantly mediated” (Gadamer, 2004, p. 291), and the meaning we attribute to them is never fixed “because it changes a future, and that future will remake the meaning of the past” (Mattingly, 2010, p. 143). Understanding, then, is not just the product of cognitive processes. Neither is the body only a mere vehicle that passively receives information. Rather, the body in action is at the center of understanding (Jackson, 1983, Jackson, 1989) as understanding “implicates all the senses to varying degrees and involves a bodily relationship with the objects and others” (Jackson, 2012, p. 171).

Engaging the body in all of its senses runs the risk of transforming the ways in which we understand and enact “good” care. Seeing care from this embodied practice perspective asks us to consider what if assumptions and expectations of care were suspended while enacting care? On a bodily and experiential level, what would happen if carers and persons living with dementia move together in ways that are not solely defined by caregiving tasks? What might be the benefits of a Moving-with program that was specifically designed to give caregiving dyads opportunities to move together in novel ways? To answer these questions, we start with an exchange between Sue (a pseudonym), carer for her husband Phil, and Keven, the professional dancer and ethnographer, just before the last session of Moving-with; an exchange in which Sue refers to her experience of Moving-with as “some good times.”

It is early September, and this is the last session of Moving-with. We meet again in the facilities of a community-based organization where the group happened over the previous three months. The common room in which the group is run is a long space with yellow and cream walls. The wall across the room entrance is full of windows, allowing the sun's light and warmth to enter, which, on bright summer days, makes the room hot. While I am setting up the camera on the table to videotape the session, Sue and Phil arrive. Phil briefly greets me and then walks to the circle of chairs carefully placed for the Moving-with session. Sue stops and stands in front of me across a table where I am setting up the camera, asking, “Did you get what you wanted?” I think about the data collected and my emerging thoughts and then, before responding, ask, “What did you get out of these groups?” She looks at me, pausing for a moment before a smile appears on her face:

Sue: I got to spend some good times with my husband.

Even though she has often said that Phil was “always easy” despite his dementia diagnosis, she continues adding:

Sue: There are moments where we are at home together, and I feel lonely.

There is a short silence following her words. It is the first time that Sue has shared her experience of “feeling alone together.” She then looks towards and points to the circle of chairs where Phil is sitting and concludes, “but that was fun,” referring to her experience of the previous Moving-with sessions. To understand the meaning of those significant experiences that Sue refers to as “good times” and “fun,” Dewey's concepts of an experience and the live creature proved to be a particularly relevant and potent interpretative lens to illuminate what was at stake in those moments.

Dewey (1934) describes life as a flow of interactions between an organism and its environment. However, this flow is neither even nor uninterrupted. It consists of alternating phases of an organism falling in and out of balance with its environment. The recovered equilibrium is neither a return to a prior state nor a place of stagnation. Instead, equilibrium refers to new grounds for struggles and tensions from which can arise fulfillment, possibilities, and a particular type of experience of “heightened vitality” (p. 18):

Experience in the degree in which it is experience is heightened vitality. Instead of signifying being shut up within one's own private feeling and sensation, it signifies active and alert commerce with the world; at its height it signifies complete interpenetration of self and the world of objects and events. Instead of signifying surrender to caprice and disorder, it affords our sole demonstration of a stability that is not stagnation but is rhythmic and developing. Because experience is the fulfillment of an organism in its struggles and achievements in a world of things, it is art in germ (p.18–19).

When Dewey (1934) speaks of heightened vitality, he refers to an experience or those moments that are demarcated from the stream of experience, standing out and marking a before and after while at the same time integrated into it. In an experience, space and time are no longer formless and endless elements but have the ordering and organizing features of a human scene and its rhythms, which give meaning and directions for a live creature. For Dewey (1934), the live creature is fully alive and wholly united with its environment. The live creature senses its environment beyond the sole registration of sensory input. Sensing is inseparable from motion. For example, “all senses are equally on the qui vive. As you watch, you see motion merging into sense and sense into motion—constituting that animal grace so hard for man to rival” (p. 19). The live creature's motion also retains past experiences. In contrast to a “mortal” (p. 18), who is holding on to the past as a burden or set of lost opportunities, the live creature adopts its past and uses it to inform its present interactions with the world. The live creature “… retains [what is] from the past and what it expects from the future operate as directions in the present. […] The past absorbed into the present carries on; it presses forward” (p. 19).

Dewey's conceptualization of an experience and the live creature underlines how an experience becomes an enduring memory that has a “unity that gives it its name, that [experience]” (p. 37). To grasp the meaning of Sue's pronouncement of Moving-with as “that was fun” as informed by Dewey's philosophy on aesthetics and experience, the sub-study focused on here utilized a narrative-phenomenological theoretical framework to understand the particularities of how those “good times” were created in the midst of action, as more fully described below.