Relational Citizenship

The turn to citizenship discourse in dementia studies is intended to redress the ways in which persons living with dementia are socially and structurally disadvantaged because of assumptions that agency is fundamentally and irrevocably eroded by dementia.^{Reference Bartlett, O'Connor, Kontos, Miller and Kontos7} Citizenship discourse offers important insights regarding the requirements of fair and equitable treatment of individuals living with dementia, yet there has been an absence of engagement with the insights of critical gerontology's theoretical subfield of embodiment and dementia, specifically, “embodied selfhood.”⁸ The model of relational citizenship was developed to broaden and enrich the citizenship discourse as applied to dementia by bringing attention to how the capacities and senses of the body are central to body-self/body-world relations. Relational citizenship is novel in that it furnishes citizenship with a human rights ontology that recognizes corporeality and relationality as fundamental to self-expression, interdependence, and reciprocal engagement.

The theory of corporeality that provides the ontological foundation of the model — embodied selfhood^{Reference Kontos, Tulle, Kontos, Kontos, Cohen, Leibing and Kontos9} — takes its theoretical bearings from Merleau-Ponty's reconceptualization of perception^{Reference Merleau-Ponty and Smith10} and Bourdieu's concept of habitus.^{Reference Bourdieu, Nice, Bourdieu and Nice11} This advances a theory of selfhood that considers both the pre-reflective intentionality of the body and its natural (pre-social) engagement with the world (the body's power of natural expression), as well as the ongoing socio-cultural relationship between the pre-reflective body and the world (history, culture, power, and discourse). Together, these theoretical bearings capture the pre-reflective capacity of the body to seize upon and transform the perceptible into something meaningful. The body here is intentional in its capacity to perceive and experience.^{Reference Kontos12} This importantly challenges assumptions of loss of agency with dementia by treating the body as itself having creative and intentional capacity. Thus, even in the face of cognitive impairment, agency persists.

In the encounter between the body and the social world, socio-cultural dispositions do not suppress the body's power of natural expression but, in fact, constantly utilize the pre-reflective, practical, and implicit hold that individuals have on their body and the relation between their body and the world. Although postures, gestures, and movements of the body disclose a socio-cultural particularity that is shaped by socialization associated with membership in a particular cultural and historical context, socio-cultural practices are always dependent upon a basic level of intentionality, impelling and sustaining socio-cultural expressions at every moment.¹³

Embodied selfhood highlights our intrinsic corporeality of being-in-the world, which sustains and animates self-expression, and which is always intertwined with a shared world. In this sense, embodied selfhood is inherently relational and intercorporeal. Intercorporeality captures the ways in which bodies are interconnected with one another through a prereflective intertwining of body schemas; it is what Merleau-Ponty describes as an intertwining of the lifeworld through the flesh.^{Reference Merleau-Ponty and Edie14} An intercorporeal conception of bodies emphasizes the constitutive relations between them,^{Reference Diprose15} which provides “a formative and dynamic structure”^{Reference Käll, Dolezal and Petherbridge16} for human embodied existence. It is important to note that this shared corporeal existence with other beings does not diminish the significance of alterity; indeed intercorporeal understanding is not a perfect appropriation of others' experiences. In this sense, intercorporeality is simultaneously the foundational nature of carnal existence and the alterity and ambiguity of the possibilities that such existence affords. Given that embodied selfhood and relationality are fundamental to the human condition, it is essential that they be supported through socio-political institutions and organizational practices at the local level of citizenship. Grounding the model of relational citizenship with a human rights ontology that recognizes these pre-reflective dimensions of agency thus helps ensure that we cultivate a relational environment that supports the capacity of individuals living with dementia for creativity, imagination, and other positive human potentialities.^{Reference Kontos, Miller and Kontos17}

Traditional Approach to Dementia/Dementia Care

Dementia care is dominated by the biomedicalization and the pharmaceuticalization of behavioral and psychological symptoms.^{Reference Coveney, Gabe, Williams and Abraham18} With this approach, the person with dementia is reduced to his/her neuropathology,^{Reference Behuniak, Cuijpers and van Lente19} and care practices are restricted to attending to bodily needs^{Reference Twigg, Daly and Szebehely20} and managing “challenging behaviors” with mechanical and/or pharmacological restraint.^{Reference Maust, Kim, Seyfried, Chiang, Kavanagh, Schneider and Kales21} This approach to care poses significant barriers to meaningful participation by persons living with dementia in planning and decision-making around their own care.^{Reference Dannefer, Stein, Siders, Patterson, McWilliam, Coleman, Melito, Sweetland, Saidak, Smit, Thompson and Milak22} Persons living with dementia are also presumed to be unable to make meaningful contributions to their own lives and the lives of others.^{Reference Dupuis, McAiney, Fortune, Ploeg, Witt and Sterin23} As such, they are viewed as major sources of burden to family carers, formal care providers,^{Reference Zeilig, Volicer and Hurley24} and the healthcare system.^{Reference Schaller, Mauskopf, Kriza, Wahlster and Kolo-minsky-Rabas25}

The treatment and management of behavioral and psychological symptoms of dementia (BPSD) is associated with high levels of use of psychotropic medications,^{Reference Lucas, Chakravarty, Bowblis, Gerhard, Kalay, Paek and Crystal26} which has received international attention given evidence of significant harms and deleterious consequences of inappropriate psychotropic use.^{Reference Schneider, Dagerman, Insel, Simoni-Wastila, Ryder, Qian, Zuckerman, Shaffer and Zhao27} Additionally, the actions of persons living with dementia are not always symptomatic of dementia itself, but may be need-driven^{Reference Cohen-Mansfield28} or indicative of other purposeful and meaningful communication such as a response to physical pain or discomfort,^{Reference Kovach, Kelber, Simpson and Wells29} environmental over-stimulation,^{Reference Rader, Barrick, Hoeffer, Sloane, McKenzie, Talerico and Glover30} “prescribed disengagement,”^{Reference Swaffer31} social isolation,³² and stigmatizing practices such as infantilization, intimidation, and objectification.^{Reference Kitwood33}

In response to concerns about the overreliance on pharmacotherapies, non-pharmacological interventions are now recommended before resorting to psychotropic medication.^{Reference Fossey, Ballard, Juszczak, James, Alder, Jacoby, Howard, Moniz-Cook, Woods and Richards34} Behavioral therapy is the standard non-pharmacological approach to suppressing or eliminating BPSD.^{Reference Douglas, James and Ballard35} It involves assessing behavioral triggers, with a focus on modifying the behavior with appropriate intervention.^{Reference Cohen-Mansfield, Mintzer, Emerson, Emerson, Hatton, Bromley and Caine36} Some examples include: using in-bed towel baths rather than forced showering or bathing,^{Reference Rader, Barrick, Hoeffer, Sloane, McKenzie, Talerico and Glover37} less caffeine, and increased day-time exercise to reduce night-time “wandering.”^{Reference Gitlin, Kales and Lyketsos38}

The Turn to the Arts in Dementia Care

With the movement to non-pharmacological interventions, arts-based programs have been shown to reduce BPSD (e.g., agitation, apathy).^{Reference Beard39} Termed a “prescriptive approach to [therapeutic recreation],”^{Reference Genoe and Whyte40} arts- and leisure-based programs ascribe to biomedical cornerstones of functional intervention and behavior modification. Given these positive outcomes, and the rapidly growing field of arts in healthcare^{Reference Staricoff41} that integrates the arts into medical settings, supplementing medicine and social care with opportunities to participate in the arts is deemed critical in dementia care.^{Reference Beard, Chancellor, Duncan and Chatterjee42} Common arts-based programs in dementia care include music, art therapy, visual arts, and drama.⁴³

Dance, as aesthetic self-expression, is a unique arts-based program that combines the physical benefits of exercise with psychosocial therapeutic benefits. Evidence supporting the beneficial effects of dance for persons living with dementia has been demonstrated.^{Reference Guzmán-García, Hughes, James and Rochester44} Specifically, therapeutic dance programs have been found to significantly improve neuropsychiatric symptoms, such as agitation, and cognitive and physical functioning.^{Reference Ho, Cheung, Chan, Cheung and Lam45} For example, Dance Therapy in the United States or Dance Movement Psychotherapy in the United Kingdom uses dance as psychotherapeutic treatment and a rehabilitative medium for individuals with a range of conditions, especially those for whom verbal communication is difficult.^{Reference Karkou and Meekums46} These particular dance programs interweave dance and psychotherapy based on the premise that movement reflects patterns of cognitive reflection and emotion and that remediating posture or autonomic nervous system activity will influence neurological processes thought to be implicated in mood, perception, sensory experience, cognition, and well-being.^{Reference Payne, Warnecke, Karkou and Westland47}

Research on dance in the context of dementia care has focused primarily on its therapeutic and clinical benefits. For example, dance therapy has been found to: decrease verbal/physical aggression and anxiety; improve emotional states, cognition, orientation, mobility, and balance; and reduce falls.^{Reference Abreu, Hartley, Hamill, Smith and Röhricht48} Other “‘softer’ positive benefits”^{Reference Guzmán, Robinson, Rochester, James and Hughes49} of dance have been identified, including empowerment, communication and meaningful self-expression, communal spirit, pleasurable experience, and sociability.^{Reference Palo-Bengtsson, Ekman, Nyström, Lauritzen, Hill, Chaiklin and Wengrower50} However, these are typically considered side benefits and not the primary intention of implementing dance programs.^{Reference Hill, Chaiklin and Wengrower51} Further, research on dance has largely neglected the first-person experiential perspective, instead focusing on objective measures and proxy testimonials.⁵² Consequently, neither research nor practice address the value of dance in itself; the enrichment that dance brings to human lives is obscured by treating dance exclusively as a means to a therapeutic end.

Embodied Cognition: Legitimizing Dance Therapy but at What Cost?

The instrumental reduction of dance to its application as a therapeutic tool with quantifiable outcomes can be traced to the contemporary movement towards cognitive science with an emphasis on embodied cognition, which defines the context within which the field of dance therapy has sought to gain legitimacy.^{Reference Batson, Quin, Wilson, Payne, Warnecke, Karkou, Westland and Warburton53} Described as third-generation cognitive science, embodied cognition moves beyond conceptualizing the mind as directing the body in a top-down structure to understanding mental processes as distributed throughout the body in an elaborate network of interconnections.^{Reference Rosch, Varela and Thompson54} A key tenet of embodied cognition is that mental processes are stimulated with movement.^{Reference Batson, Quin and Wilson55} This informs the objective of a wide range of therapeutic dance programs, which is to harness the curative potential of movement.^{Reference Payne, Warnecke, Karkou, Westland, Karkou, Meekums, Fischman, Chaiklin and Wengrower56} For example, dance therapists observe movements to assess individuals' strengths and areas of challenge. These assessments are then used to create “movement analyses” or “movement profiles”^{Reference Coaten and Newman-Bluestein57} which, in turn, inform dance/movement therapy interventions aimed at improving “performance and productivity.”⁵⁸

While embodied cognition grants dynamism to the body, that dynamism is conceptualized solely in relation to cognitive processes. The emphasis on cognitive and neural processes has effectively elided how the body itself, separate and apart from cognition, could be a source of intelligibility, inventiveness, and creativity in everyday life, imbued with a life force that has its own intentionality.⁵⁹ Sentient and tacit forms of knowledge and expression are so central to human existence,^{Reference Kontos and Naglie60} and are uniquely supported in dance, yet dance continues to be adopted for instrumental purposes for individuals living with dementia. This has not only impoverished understandings of dance but perpetuates the restriction of dance in dementia care to its application as a therapeutic.

The model of relational citizenship, with its focus on intercorporeality, social entitlements, and state responsibility to acknowledge and support citizens' participation in everyday life, is particularly pertinent for more fully supporting dance for persons living with dementia.

Towards a New Ethic to Support Dance Engagement in Dementia Care

With the model of relational citizenship, dance is understood not in cognitive terms but rather as coming into being by taking for granted “all the latent knowledge of itself that … [our] body possesses.”⁶¹ This latent knowledge can be understood as “kinesthetic background”⁶² that is related to dance movements not by way of mental representation but rather such background is immanent in the movements themselves, impelling and sustaining them at every moment. This form of know-how functions below the threshold of cognition and is enacted as practical sense at a prereflective level. Dance is a bodily form of consciousness, what in embodied selfhood terms is the body's pre-reflective ability to direct itself toward the world.^{Reference Kontos and Kontos63}

Dance thus derives from the non-consciousness of habituation rather than consciously learned principles and rules. In the context of cognitive impairment, dance takes on even greater significance given that corporeality becomes the primary means of engaging with the world and with others. Dance provides a unique medium for non-verbal communication, affect, and reciprocal engagement which profoundly enables the relational citizenship of persons living with dementia. It is thus problematic that dance as embodied self-expression is restricted to its instrumental application as a therapeutic tool for behavior management and improvement of cognitive functioning. Such instrumentalism is rooted in biomedical professional and moral standards of care that privilege the guarding of the individual and the fulfillment of their immediate and basic needs (e.g., physical safety and comfort).^{Reference Jennings, Carlson, Howe, Jensen-Moulton, Lerner and Straus64}

In contrast, the ethic we advance based on the model of relational citizenship goes well beyond custodian-ship and remediation. This alternative ethic is characterized by a pre-reflective intercorporeal sensibility that shifts the goals of care to a moral responsibility to promote human flourishing.^{Reference Nussbaum, Carlson, Figueroa and Harding65} Flourishing in this context occurs when embodied selfhood is supported in and through the creation of enabling environments and relational practices — or “corporeal-ethical spaces”^{Reference Macpherson and Dodge66} — that support embodied forms of communication and meaningful engagement. Creating such enabling environments and relational practices requires that the embodied and relational ethic become part of the moral fabric of everyday life. It further requires the redistribution of economic resources, and the development of relational skills and practices of carers that nurture embodied selfhood.

There are some innovative dance programs already offered to persons living with dementia in long-term residential care, such as the “Movement to Music” program that is offered by teachers from Canada's National Ballet School, developed in partnership with Baycrest Health Sciences.⁶⁷ However, these are rare and are not systematically offered across long-term residential care settings. Yet dance also needs to be supported outside of structured social programs to ensure that residents' capacities are supported and nurtured in all aspects of institutionalized life and not exclusively through arts and leisure programming.^{Reference Genoe, Dupuis, Moss and O'Neill68}