Skip to main content
PMC home page
The Gerontologist logoLink to The Gerontologist
. 2020 Sep 10;61(5):714–723. doi: 10.1093/geront/gnaa129

Dancing With Dementia: Exploring the Embodied Dimensions of Creativity and Social Engagement

Pia Kontos 1,2,✉, Alisa Grigorovich 1, An Kosurko 3, Rachel J Bar 3,4, Rachel V Herron 5, Verena H Menec 6, Mark W Skinner 7
Editor: Barbara J Bowers
PMCID: PMC8495889  PMID: 32909607

Abstract

Background and Objectives

Dance is increasingly being implemented in residential long-term care to improve health and function. However, little research has explored the potential of dance to enhance social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia and their families.

Research Design and Methods

This was a qualitative sequential multiphase study of Sharing Dance Seniors, a dance program that includes a suite of remotely streamed dance sessions that are delivered weekly to participants in long-term care and community settings. Our analysis focused on the participation of 67 persons living with dementia and 15 family carers in residential long-term care homes in Manitoba, Canada. Data included participant observation, video recordings, focus groups, and interviews; all data were analyzed thematically.

Results

We identified 2 themes: playfulness and sociability. Playfulness refers to the ways that the participants let go of what is “real” and became immersed in the narrative of a particular dance, often adding their own style. Sociability captures the ways in which the narrative approach of the Sharing Dance Seniors program encourages connectivity/intersubjectivity between participants and their community; participants co-constructed and collaboratively animated the narrative of the dances.

Discussion and Implications

Our findings highlight the playful and imaginative nature of how persons living with dementia engage with dance and demonstrate how this has the potential to challenge the stigma associated with dementia and support social inclusion. This underscores the urgent need to make dance programs such as Sharing Dance Seniors more widely accessible to persons living with dementia everywhere.

Keywords: Arts, Institutional care/residential care, Quality of life, Social isolation, Stigma

Stigma associated with dementia deprives persons living with dementia and their families of their human rights and threatens their health, well-being, and quality of life. This stigma is largely based on a particular cultural imaginary (Gilleard & Higgs, 2013), or collective cultural representation of persons living with dementia as being incapable of purposeful and meaningful communication and interaction. Evidence of this stigma can be seen in the dominance of negative accounts of dementia, particularly in the mass media, that represent life with dementia as inevitable loss and decline, or a living death (Funk et al., 2020; Grigorovich, 2020; Latimer, 2018; Mitchell et al., 2013). This stigma is also reproduced within the “acute cure” model of biomedicine that tends to reduce the person with dementia to neuropathology and dysfunction (Cuijpers & van Lente, 2015; Mitchell et al., 2013), with a corresponding focus of care on attending to basic bodily needs (Daly & Szebehely, 2012; Nolan et al., 2002). Stigmatization of persons living with dementia, and by extension their families, is a significant barrier to their social inclusion, including the lack or denial of opportunities for social engagement, the pursuit of meaningful activities, and participation in planning and decision making in their communities (Dupuis et al., 2012; Nolan et al., 2002). Social inclusion refers to access to resources, capabilities, and rights for full participation in relationships and activities across economic, social, and cultural spheres at all levels of society (Popay et al., 2008; Skinner et al., 2018). Social inclusion is facilitated at the macrolevel (e.g., norms and legislation) and the microlevel (e.g., individual and interpersonal).

Decreasing stigma associated with dementia and fostering dementia-inclusive communities are key public health priorities across national and international settings (Alzheimer Disease International, 2012). Engagement with the arts is increasingly advocated to reduce stigma and to increase social inclusion of persons living with dementia because the arts powerfully support nonverbal communication, affect, and the opportunity to participate in activities that are meaningful to self and others (Black et al., 2018; Noice et al., 2014; Swinnen & de Medeiros, 2018). The most common arts-based programs in dementia care include music (Raglio et al., 2008), art therapy (Rusted et al., 2006), and drama (Basting, 2009). More recently, dance is also receiving increasing attention in dementia care for its potential to support intersubjectivity, and embodied or somatic expression, all of which are essential dimensions of experience and care when it comes to dementia (Black et al., 2018; Noice et al., 2014). However, for the most part, dance programs in residential long-term care homes (e.g., nursing homes) are implemented as a therapeutic intervention with the aim of reducing neuropsychiatric symptoms associated with dementia (e.g., agitation) and improving cognitive and physical health outcomes (Karkou & Meekums, 2017). Given that dance has the power to support embodied self-expression, which in the context of advanced dementia is the primary means of communication, it is far too limited that dance is restricted to its instrumental application as a therapeutic tool to improve “behaviors” and cognitive functioning.

Research on dance in the context of dementia care has focused primarily on its therapeutic and clinical benefits. This informs the objective of a wide range of therapeutic dance programs, which is to harness the curative potential of movement (Karkou & Meekums, 2017). 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” (Coaten & Newman-Bluestein, 2013) which, in turn, inform dance/movement therapy interventions aimed at improving “performance and productivity” (Fischman, 2016). The instrumental reduction of dance to its application as a therapeutic tool with quantifiable outcomes, and the related neglect of first-person experiential perspectives (Hill, 2016), can be traced to the contemporary movement toward cognitive science with an emphasis on embodied cognition (Batson et al., 2012; Warburton, 2011). A key tenet of embodied cognition is that mental processes are stimulated with movement (Batson et al., 2012). A limitation of this theory is that the emphasis on cognitive and neural processes has effectively elided how the body itself could be a source of intelligibility, inventiveness, and creativity in everyday life, imbued with a life force that has its own intentionality (Kontos & Grigorovich, 2018). Sentient and tacit forms of knowledge and expression are central to human existence 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. There is thus a pressing need to give greater prominence to understanding the ways that dance increases social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia.

With an interest in addressing this need, we evaluated a novel dance program, Sharing Dance Seniors, to explore the ways in which it supports social inclusion at the micro level for people living with dementia and their families in residential long-term care settings.

Method

Study Design

This article reports findings from a qualitative sequential multiphase study in nonmetropolitan areas of two Canadian provinces: Manitoba and Ontario (for full methodological details see Skinner et al., 2018). The full study included older adults living with dementia and their carers who participated in the Sharing Dance Seniors program across institutional and community settings. The focus was threefold: (a) explore the experiences of participants as they relate to multiple dimensions of social inclusion, (b) assess the remote delivery of the program to enhance social inclusion processes and outcomes, and (c) identify the challenges of expanding the program in terms of improving social inclusion. There has been a pilot evaluation of the face-to-face delivery of the program (Bar & Tafler, 2018); ours is the first formal evaluation of the remote delivery of the program in the context of its expansion nationwide. Our focus here is the experiences of participants of the program who are older adults living with dementia and their family carers in residential long-term care settings in towns located in Manitoba.

Settings and Participants

Participants living with dementia and their family carers were recruited from five different residential long-term care facilities that provide 24-h nursing and personal care, with access to a physician or other health care professionals, and ranged in size from 30 to 100 beds. The eligibility criteria were broad and inclusive. Recreation therapists in collaboration with nurse managers facilitated recruitment by introducing the study to residents living with dementia and family carers and then connected interested family carers with the Research Associate, who then obtained consent by proxy for the residents (Karlawish, 2003). All family carers interested in participating also consented to participate. Resident assent (Slaughter et al., 2007) was ascertained by the Research Associate on a per session basis based on the interpretation of residents’ verbal and gestural cues. At no time did a resident communicate dissent to participate. We had a total of 67 resident participants (19 males and 48 females) and 15 family carers (5 males and 10 females).

Ethical Approval

Ethical approval was granted from the research ethics boards of the institutions where data collection and analysis were coordinated as well as from one regional health authority.

Sharing Dance Seniors

Sharing Dance Seniors (Herron et al., 2019; Skinner et al., 2018) is an innovative, community-oriented, dance program that is intended to support social inclusion by making dance accessible to older adults with a range of physical and cognitive abilities, including people living with dementia, and by emphasizing the importance of creative self-expression and prioritizing expressive capacities and social interaction. The program is a joint venture between Baycrest Health Sciences and Canada’s National Ballet School. It involves a suite of remotely streamed (prerecorded video) dance sessions for participants in institutional and community settings with on-site facilitators supporting participants. The program was developed in 2014 and has been running locally in Ontario since its inception. Each session involves dances that are accompanied by a live pianist; the music for each dance is taken from popular songs across multiple genres and styles (e.g., classical jazz, country, and blues). For participants in residential long-term care settings, the program is instructed from a seated-only position to accommodate physical and cognitive challenges. In-person facilitators are integral to the delivery of the program; they are not required to have previous dance experience, but receive online orientation and training regarding the program and their role. In the context of long-term residential care settings, facilitators were typically long-term care staff involved in the delivery of arts-based and leisure programming (e.g., recreation therapist); their facilitation of the dance program was thus part of their usual work duties. The role of the facilitator is to welcome and organize participants, to participate in and model the program for participants to complement the on-screen instructor, and to monitor and encourage participants for maximum benefit and safety. Family carers and volunteers are also encouraged to participate in each session rather than observe or only support the participation of persons living with dementia. The program includes eight weekly sessions, each approximately 45 minutes in duration. Each dance is guided by both physical and artistic goals and includes a warm-up dance, dances engaging upper and lower extremities, narrative dances, and dances including mirroring, improvisation, and singing.

Data Collection

The larger study involved qualitative data collection (i.e., participant observation, video recordings, diaries, focus groups, interviews, and reflections) in the Manitoba and Ontario sites. All of the data were collected by a Research Associate trained in these qualitative methods. Observations were collected over the course of the program during each dance session at every study site, and a subset of the sessions were video-recorded (see Supplementary Material for observational protocol). At the end of the program, focus groups were conducted with all participants, family carers, instructors, and facilitators to explore the effectiveness of the program delivery and the challenges of implementing the program (see Supplementary Material for focus group guide). Interviews were also conducted with a subset of participants, family carers, instructors, and facilitators to explore in greater depth experiences of the program and its impact (see Supplementary Material for interview guide). Given our interest in how dance increases social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia, we focus on data that were collected through observations, video recordings of dance sessions, and interviews and focus groups with persons living with dementia and family carers.

Data Analysis

Data analyses involved the research team analyzing field notes, interviews, focus groups, and video recordings to develop a common coding manual. Transcriptions of the interviews and focus groups, as well as field notes, were analyzed concurrently and recursively using standard thematic analysis techniques (Denzin & Lincoln, 2000). This began with reading and rereading the data and an inductive descriptive process of sorting and categorizing the data. This entailed assigning to text segments a descriptive code reflecting the original statement (e.g., “imagination” to reflect the text segment of a field note “participants audibly slurp as they imaginatively sip their coffee”), which served as the basis for category formation. Through an inductive, iterative process, categories with similar content were investigated for interrelationships (e.g., the interrelationship between letting go of what is “real,” being immersed in the narrative of a particular dance, adding their own style as part of their imaginative offerings) and then refined by moving from lower order to higher order themes as analysis progressed (e.g., moving from “pretends to stir the coffee” to “collaborative animation of the narrative,” and then to “sociability”). Finally, analytical categories were examined to illuminate the role of embodiment in creative self-expression (i.e., playfulness) and in social engagement (i.e., sociability). Video-recorded sessions were drawn upon to complement the field notes by providing more detail (e.g., interactions between participants, facial and gestural movements, and expressions). This process involved transcribing select video-recorded sessions as nonparticipant observer field notes, detailing resident participants’ nonverbal social and affective engagement, verbal exchanges, and emotive responses, which required reviewing interactions in slow motion in order to focus on nonverbal micro-features of the interactions (Kontos et al., 2017).

Credibility was ensured by decreasing potential “reactivity” during observations by acclimatizing staff to researcher presence and establishing good rapport (Spano, 2005). Dependability and confirmability were established through journaling and a written audit (Miyata & Kai, 2009) that involved a methodologically self-critical account of research conduct (e.g., documenting and discussing with the team theoretical assumptions, explanations of codes and themes, methodological and analytic procedures, and reflections on data collection and analysis). Finally, the theoretical generalizability/transferability of the research was addressed through the provision of necessary detail to assess the applicability of our findings to other contexts (Miyata & Kai, 2009).

Results

We have organized our analysis of the data into the following two themes that highlight the critical role of embodiment in creative self-expression and social engagement: playfulness and sociability. Playfulness refers to the ways that the participants let go of what is “real” and became immersed in the narrative of a particular dance, often adding their own style as part of their imaginative offerings. Sociability captures the ways in which the narrative approach of the Sharing Dance Seniors program encourages connectivity/intersubjectivity between participants and their community; participants co-constructed and collaboratively animated the narrative of the dances through gestures, movements, and verbal expressions.

Playfulness

In contrast to dance therapy programs that typically emphasize the structured repetition of a set of choreographed movements, Sharing Dance Seniors uses a narrative approach to dance that encourages participants to express themselves through movement in their own unique way. For example, each movement or inspiration for a movement is introduced in the context of a narrative about common knowledge/experiences and it is up to the participants how they wish to perform or express the movements. Take the “Under the Sea” dance as an example. The dance instructor begins by saying “Let’s imagine diving under the sea” and describes the various things one might encounter under water. These include starfish, a shark, sea turtles, snails, and seaweed, and the dance itself involves participants enacting the movements of this ocean life. For example, in the following observation, the instructor describes how seaweed may be the movement’s inspiration, and adds that it is up to the individual participants to decide if they are fast- or slow-moving seaweed or long or short pieces of seaweed:

Under the sea I love watching the seaweed as it gracefully floats with the water [gracefully moving her arms up above her head, fluidly bending and curving her elbows, wrists, and fingertips to resemble pieces of seaweed swaying back and forth underwater]. And I’d like you to do any seaweed you would like [fluidly moving one of her curved arms behind her head as she leans her head back, then crossing her arms in front of her before lifting one arm above her head and moving the other across her body; next, increasing the speed of her arm movements and varying the arm movements from above her head to in front of her body, while extending her gaze above her head following her movements]. [Continuing with these movements] You can be your own seaweed. However you feel seaweed moves, that’s how I’d like for you to move. Are you a little piece of seaweed [hunched over and with her forearms upright and parallel in front of her, moving her arms and hands closely in front of her in a synchronized wave motion]? Are you maybe a big wild piece of seaweed that’s going to catch lots of fish inside of it [chest and arms open, moving her arms in large, swooping, unsynchronized movements in front of her and above her head, along with softly kicking her legs out in front of her]?

Given the emphasis of the program on creative self-expression and inclusiveness, the thematic choice of ocean/sea creatures is deliberate given that it offers a broad spectrum of possibility in terms of upper body movement from a seated position.

The opportunities for self-expression in the ocean dance are also inherently playful as they allow participants to try out different ways of moving with the aim of having fun, rather than achieving proficiency with the movements themselves. The following three observations illustrate the diverse ways in which the participants moved as seaweed:

A participant lifts up both of her hands above her head with a slight bend in her elbows and sways her arms synchronously from side to side, slightly bending her wrists to create a gentle swaying motion. She then brings her arms together above her head and slowly lowers them simultaneously with one arm to each side as if drawing two sides of a large circle. She continues this arm movement but this time alternating between her right and left arms creating a large semicircle with each. She does this with slightly bent wrists, which creates a soft and graceful movement as she lowers her arms.

He rests his elbows on the arms of his chair and rapidly wiggles his fingers while ever so slightly bending his wrists up and down.

She extends only her left arm in front of her and very briskly flicks her wrist up and down, and then she raises the same arm above her head and wildly swings it in multiple directions.

The narrative of “under the sea” and the imaginative prompts make the dance accessible/relatable while keeping many of the aesthetics of dance, which are themselves familiar to the participants (e.g., piano and familiar music). It is the telling of a familiar story through the body, activated by the imagination.

Another example of the imaginative and playful nature of the dance is the “Commute to Work” dance which involves taking the bus, bicycling, walking to work, and preparing coffee upon arrival at the office. The following observation of this dance captures the full immersion of participants in the dance—that is their acceptance of the offer—and, echoing the “Yes, and-ing” principle of improv, they add something of their own to it:

A family carer turns to his wife (a resident participant), and as he circles his hands around each other mimicking cycling, he says to her “I got in an accident on my bicycle.” He laughs and leans in to her, and she responds “oh we’re going really fast now” and they both laugh. She says “wooo!” and laughs as her husband speeds up his cycling motions.

The following observation of the “Railroad” dance, which involves digging to lay down the tracks, the wheels of the train moving, and passengers waving, further illustrates the imaginative offerings of the participants:

The music starts, and, following instruction to wipe the imaginary sweat off their brows, the participants express how hot they are by wiping their arms across their foreheads. One of the participants expresses the heat of the sun slightly differently by raising his hand up over his eyes to create an imaginary visor to shade his eyes.

In the field of dance, this highly individual addition to dance is referred to as a “signature” or “flourish” that the dancer adds to a pattern of movements associated with a particular dance form that reflects their own personal style (Kraut, 2010; Ophir, 2016). Though the notion of “signature/flourish” is typically used in reference to “movements,” here we extend the concept to include the creative agency of persons living with dementia manifest in both verbal and “kinetic” articulations, as illustrated in these examples.

Sociability

The narrative approach of the Sharing Dance Seniors program not only supports individual playfulness and imagination, but also encourages connectivity/intersubjectivity between participants and their community, including carers, facilitators, and volunteers, all of whom participate in each dance together. Connectivity/intersubjectivity is encouraged by the very nature of the dances of the program, which hinges on participants being “accomplices” to the scene narrated (i.e., they are all doing it at the same time and interacting with each other to “accomplish” the scene). Here we are extending Gray’s (2019) insights about the role of audience members as “accomplices” to actors’ inventive disruption of space through their miming. Similarly, participants of Sharing Dance Seniors are accomplices to each other’s movements, collaboratively animating the narrative. For example, the “Commute to Work” dance culminates with the preparation of coffee at work and sharing it with a colleague. The participants engaged in the dance with their imaginative offering of coffee as well as their acceptance of coffee offered by others. The following observation captures this reciprocal and imaginative co-construction:

A facilitator offers a participant some coffee. The participant turns to face her, says “thank you”, and then pretends to stir the coffee. Other participants audibly slurp as they imaginatively sip their coffee.

The “Sunrise” dance offers another example of how participants were accomplices to each other’s movements, collaboratively animating the narrative. For this dance, the instructor invites participants to imagine they are holding the sun in their arms, raising it above their head, and releasing it by opening their arms and slowly lowering them to their side. The release of the sun continues with participants being invited to send out sunbeams to each other by stretching out each arm and extending their fingers with an open hand: “Let’s see your sunbeams! Maybe it’s to a friend [as the instructor extends her arm and hand out towards the camera].” The following observation powerfully captures how the participants were fully immersed in the narrative and co-constructed the animation of it:

When I [Research Associate] extend a sunbeam to [a participant living with dementia], he pretends that he has been shot in the chest by grabbing his chest and collapsing his shoulders forward. Another resident participant sends him a sunbeam, and he shoots one back to him with a sound effect—“Zhoom!” He then pretends to eat the sunbeams as they are shot to him, opening his mouth wide and chomping down on them.

This observation further illustrates the “signature/flourish” that participants often added, in this case with sound effects, drama, and humor.

The “Under the Sea” dance, specifically the shark component, offers yet another powerful example of how the narrative approach encourages connectivity/intersubjectivity. The instructor invites everyone to imagine they are a shark and to “make contact” with another shark in the water using a hand gesture:

All of the participants bend their right arm, bringing their right hand up so that it is perpendicular to their face, and look to their left and to their right and across the room for someone to make contact with. Once they make eye contact with another participant they straighten their arm, pointing their outstretched hand towards the person gesturing the “shark contact.” The participants laugh with joy and then eagerly resume the starting position with their hand at their face, and look around the room for another participant with whom to make “shark contact.”

Again following the insights of Gray (2019), by accepting the invitation and imaginatively participating in “making contact” the participants inventively disrupt the space and reinvent it as something else with what they do with their bodies.

As much as we had hoped that the participants would fully engage with the program by expressing their creativity, we were surprised/curious that they did so with such enthusiasm and commitment. This led us to explore how they were supported in doing so, particularly given that instruction of the program was remotely delivered via prerecorded video sessions. There are a number of aspects of the delivery of the program that are relevant here. The dance instructor builds participants’ comfort with engaging in dance by explicitly encouraging them to experiment and use the space that they are in to play and explore movement. She emphasizes creativity rather than memorized repetition, which frees the participants to be imaginative with their movements. She regularly reminds the dancers that all movements are welcomed in the context of the dances and that there is no right or wrong way to dance. This is particularly significant in the context of dementia where there is typically emphasis on memory, accuracy, and reorientation to the present (Basting, 2009). The dance instructor is central to the creation of space where vulnerability is supported and the risk of failure is not feared. Sir Ken Robinson’s work on creativity (2006) offers a reminder of why this is so significant: he argues that if failure is feared, creativity will never be possible. Persons living with dementia themselves reflected on the importance of this:

[The dance instructor] told us to not worry about if you get … because I got mixed up a lot … I got lost—so I put my feet and did something [different] than what they were playing … because I’ve got … Alzheimer’s, I get mixed up, but I don’t care. I didn’t do the same thing that they were doing but I kept going and (shrugs shoulders) I had fun. I really had fun. (Interview)

I was always happy to see somebody else making mistakes … Because I was making so many. (Laughter) Yeah, it was reinforcing. (Interview)

Family carers also reflected on the “failure-free” emphasis of Sharing Dance Seniors:

[Sharing Dance Seniors] drew everybody to it, nobody felt like the odd man because they were out of sync with the rest. (Focus Group)

Not everybody could do the movements but you could see people doing what they could whether it was tapping their toes or—everybody could do what they could do in their own creative way. (Focus Group)

While the data strongly demonstrate participants’ engagement with Sharing Dance Seniors, it is important to acknowledge that there were some participants who were not engaged with the narratives of the dances in the ways that we note here. A notable example is a participant who instead of following the facilitator’s instruction, chose instead to waltz at the back of the room. This was fully supported by a staff member who accepted her invitation to waltz with her. Lack of engagement with narratives of the dances was also evident with some participants who would watch the monitor and/or other participants without contributing to the dances, and some participants who would sleep through many of the sessions.

Discussion and Implications

Our findings highlight the playful and imaginative nature of the participants’ engagement with the Sharing Dance Seniors program, which involved immersion in the narrative dance, suspension of what is real, and adding their own personality to their animation of the dance. This was fully supported by the nature of the program which emphasized creativity by fully embracing the imaginary, rather than focusing on the accuracy of participants following an inventory of movements or sequence of movements. This program stands in stark contrast to other arts-based programs that fail to support the creative potential of persons living with dementia by not offering “a fresh engagement that happens each time that allows for surprise” (Basting, 2009). For example, adult coloring books and “paint by number” are common forms of visual art programs in care homes (Hattori et al., 2011) despite the fact that people living with dementia can engage in unstructured painting with increasing development of skills (Miller & Johansson, 2016).

As Camic et al. (2018, p. 1) note, “‘creativity’ and ‘dementias’ are not two words that often find themselves linked” in popular, academic, or empirical narratives. In part, this is a result of the assumption that creativity is a cognitive “trait” that is associated with the activities and expressions of gifted individuals (Camic et al., 2018; Kontos & Grigorovich, 2019; Kontos et al., 2018; Shi et al., 2017). Termed “Big-C” creativity (Bellass et al., 2019; Kaufman & Beghetto, 2009), this construction results in an intense focus on creativity as original, genius, and a significant contribution to public life in the sciences, industry, and art. For example, in the dance field, the scholarship on “flourish/signature” has focused on the high-level performance of elite choreographers, dance teachers, and professional dancers (Kraut, 2010; Ophir, 2016). Yet we found that this highly individual offering—what Kraut (2010) refers to as “an assertion of authorship” and “an inscription of identity”—was something the participants with dementia often would make, suggesting that this highly individual addition should not be confined solely to the domain of the professional artist. Often this “flourish/signature” was in the form of humor such as the slapstick-style physical spontaneity of a participant who added sound effects when sending sunbeams to other participants as part of the “Sunrise” dance, and then pretended to eat the sunbeams that were shot to him by others. This importantly adds to the literature on humor and dementia that has focused primarily on linguistics as an important driver (Moos, 2011); our analysis underscores the importance of embodiment for the expression of humor. Humor alone did not define playfulness. Consistent with Swinnen and de Mederios’ work (2018), we found that persons living with dementia can be playful by purposefully and spontaneously creating imaginative encounters (e.g., being seaweed, a shark, sunbeams). The significance of playfulness is that it challenges stigmatizing assumptions of existential loss and broadens understanding of creativity. In our study, this was made possible by the nonstigmatizing and nonhierarchical nature of the program that involved all participants, family carers, and its “failure-free” emphasis.

The playful and imaginative nature of the participants’ engagement with dance does not register as creativity within the narrowness of the “Big-C” construction. Our findings thus support the need for a more inclusive view of creativity—what Bellass et al. (2019) have termed “little-c” creativity—that is “unlikely to have an enduring legacy,” but is “nonetheless meaningful in the context of everyday lives” (p. 7). Building on the discourse of “little-c” creativity, and more broadly participatory arts (de Medeiros & Basting, 2013; Dupuis et al., 2016), scholars have advanced the notion of “co-creativity” (Schmoelz, 2017; Zeilig et al., 2018) to signal its relational nature and to highlight how the “diverse capacities of all those involved are woven into a cohesive creative process” (Zeilig et al., 2018, p. 141). With the shift to “little-c” creativity and “co-creativity,” there has been a deliberate shift from conceptualizing creativity solely in cognitive terms, to considering creativity as embodied and relational (Bellass et al., 2019; Zeilig et al., 2018). Our findings support this shift by demonstrating the embodied nature of connectivity/intersubjectivity, which hinges on participants being “accomplices” to each other’s movements and collaboratively animating the narrative to the scene narrated. These embodied and relational dimensions of creativity are what transform solitariness of self-expression, to togetherness, which is a defining feature of sociability (Simmel & Hughes, 1949).

As with humor, sociability among persons living with dementia has largely been focused on narrative or discursive properties of communication. Little attention has been paid to the nature and meaning of nonverbal communication among persons living with dementia, particularly in the context of arts-based programs. In part, this is because most arts-based programs emphasize verbal expression, with embodied or somatic expression being less common. In contrast, our findings demonstrate how sociability of persons living with dementia, as expressed through dance, relies on embodiment as a critical source of interactive practices. This importantly contributes to the nascent scholarship that privileges the body as a source of agency in the discourse on sociability in the dementia literature (Hydén, 2013; Kontos, 2012b; Kontos et al., 2017).

Our analysis has identified intrinsic capacities in persons living with dementia for creative self-expression, including playful and imaginative engagement with others using verbal and nonverbal communication. That Sharing Dance Seniors did not engage all participants in this way by no means undermines the significance of the impact that it had for most participants. On the contrary, that so many of the participants co-constructed and collaboratively animated the narrative of the dances suggests that Sharing Dance Seniors is well positioned to offer persons living with dementia the opportunity for creative self-expression and all of its associated benefits. Among these benefits is having opportunities for social engagement and the pursuit of meaningful activities in a nonstigmatizing environment. The communal or shared arts experience of Sharing Dance Seniors makes visible the strengths and capabilities of persons living with dementia and supports new ways of being with each other that enhances social relationships. It allows for the strengths of persons living with dementia to be utilized, perceived, and valued, which counters assumptions of existential loss with dementia (Grigorovich & Kontos, 2018; Kontos, 2012a; Milne, 2010; Zeilig, 2014). Participation in the program thus has the potential to counter stigma associated with dementia by “highlighting people as individuals with complex lives that exceed the narrow description of diagnosis” (Corrigan, 2007, p. 36), by confirming their vitality through embodied, playful, and imaginative engagement, and thereby supporting social inclusion at the microlevel. Sharing Dance Seniors is thus a powerful catalyst for the creation of dementia-friendly communities and is thus most timely given the imperative for culture change in dementia care.

Supplementary Material

gnaa129_suppl_Supplementary_Material
Click here for additional data file. (18.7KB, docx)

Acknowledgments

Sincere thanks are owed to all participants of the study and to the instructors, program coordinators, and volunteers who helped to facilitate the implementation of the program. We also wish to thank Romeo Colobong for his careful review of the manuscript.

Funding

We gratefully acknowledge the support of a Canadian Institutes of Health Research/Alzheimer Society of Canada Operating Grant (CIHR/ASC grant no. 150702). A. Grigorovich also receives funding from the Canadian Institutes of Health Research (Health System Impact Fellowship).

Conflict of Interest

None declared.

References

  1. Alzheimer Disease International . (2012). Overcoming the stigma of dementia. Retrieved from http://www.alz.org/documents_custom/world_report_2012_final.pdf
  2. Bar, R J, & Tafler, M. (2018). Dance and dementia in long-term care. Paper presented at the National Symposium on Dance Therapy, Montreal, QC.
  3. Basting, A D. (2009). Forget memory. Johns Hopkins University Press. [Google Scholar]
  4. Batson, G, Quin, E, & Wilson, M. (2012). Integrating somatics and science. Journal of Dance & Somatic Practices, 3(1–2), 183–193. doi: 10.1386/jdsp.3.1-2.183_1 [DOI] [Google Scholar]
  5. Bellass, S, Balmer, A, May, V, Keady, J, Buse, C, Capstick, A, Burke, L, Bartlett, R, & Hodgson, J. (2019). Broadening the debate on creativity and dementia: A critical approach. Dementia, 18(7–8), 2799–2820. doi: 10.1177/1471301218760906 [DOI] [PubMed] [Google Scholar]
  6. Black, H K, Rubinstein, R L, Frankowski, A C, Hrybyk, G, Nemec, M, & Tucker, G G. (2018). Identity, semiotics, and use of symbols in adult day services. The Gerontologist, 58(4), 730–738. doi: 10.1093/geront/gnx074 [DOI] [PMC free article] [PubMed] [Google Scholar]
  7. Camic, P M, Crutch, S J, Murphy, C, Firth, N C, Harding, E, Harrison, C R, Howard, S, Strohmaier, S, Van Leewen, J, West, J, Windle, G, Wray, S, & Zeilig, H. (2018). Conceptualising and understanding artistic creativity in the dementias: Interdisciplinary approaches to research and practise. Frontiers in Psychology, 9, 1–12. doi: 10.3389/fpsyg.2018.01842 [DOI] [PMC free article] [PubMed] [Google Scholar]
  8. Coaten, R, & Newman-Bluestein, D. (2013). Embodiment and dementia—Dance movement psychotherapists respond. Dementia, 12(6), 677–681. doi: 10.1177/1471301213507033 [DOI] [PubMed] [Google Scholar]
  9. Corrigan, P W. (2007). How clinical diagnosis might exacerbate the stigma of mental illness. Social Work, 52(1), 31–39. doi: 10.1093/sw/52.1.31 [DOI] [PubMed] [Google Scholar]
  10. Cuijpers, Y, & van Lente, H. (2015). Early diagnostics and Alzheimer’s disease: Beyond ‘cure’ and ‘care’. Technological Forecasting and Social Change, 93, 54–67. doi: 10.1016/j.techfore.2014.03.006 [DOI] [Google Scholar]
  11. Daly, T, & Szebehely, M. (2012). Unheard voices, unmapped terrain: Care work in long-term residential care for older people in Canada and Sweden. International Journal of Social Welfare, 21(2), 139–148. doi: 10.1111/j.1468-2397.2011.00806.x [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. de Medeiros, K, & Basting, A. (2013). “Shall I compare thee to a dose of Donepezil?”: Cultural arts interventions in dementia care research. The Gerontologist, 54(3), 344–353. doi: 10.1093/geront/gnt055 [DOI] [PubMed] [Google Scholar]
  13. Denzin, N, & Lincoln, Y S(Eds.). (2000). Handbook of qualitative research (2nd ed.). Sage. [Google Scholar]
  14. Dupuis, S, Gillies, J, Carson, J, Whyte, C, Genoe, R, Loiselle, L, & Sadler, L. (2012). Moving beyond patient and client approaches: Mobilizing ‘authentic partnerships’ in dementia care, support and services. Dementia, 11(4), 427–452. doi: 10.1177/1471301211421063 [DOI] [Google Scholar]
  15. Dupuis, S, Kontos, P, Mitchell, G, Jonas-Simpson, C, & Gray, J. (2016). Re-claiming citizenship through the arts. Dementia, 15(3), 358–380. doi: 10.1177/1471301216637206 [DOI] [PubMed] [Google Scholar]
  16. Fischman, D. (2016). Therapeutic relationships and kinesthetic empathy. In Chaiklin S & Wengrower H (Eds.), The art and science of dance/movement therapy: Life is dance (2nd ed., pp. 33–52). Routledge. [Google Scholar]
  17. Funk, L M, Herron, R V, Spencer, D, & Thomas, S L. (2020). Aggression and older adults: News media coverage across care settings and relationships. Canadian Journal on Aging. Advance online publication. 1–12. doi: 10.1017/S0714980820000197 [DOI] [PubMed] [Google Scholar]
  18. Gilleard, C, & Higgs, P. (2013). The fourth age and the concept of a ‘social imaginary’: A theoretical excursus. Journal of Aging Studies, 27(4), 368–376. doi: 10.1016/j.jaging.2013.08.004 [DOI] [PubMed] [Google Scholar]
  19. Gray, J. (2019). Working within an aesthetic of relationality: Theoretical considerations of embodiment, imagination and foolishness as part of theatre making about dementia. Research in Drama Education, 24(1), 6–22. doi: 10.1080/13569783.2018.1535270 [DOI] [Google Scholar]
  20. Grigorovich, A. (2020). Governing’risky’sexualities: Representation of dementia and sexuality in the news media. Disability Studies Quarterly, 40(3). doi: 10.18061/dsq.v40i3.6877. [DOI] [Google Scholar]
  21. Grigorovich, A, & Kontos, P. (2018). Advancing an ethic of embodied relational sexuality to guide decision-making in dementia care. The Gerontologist, 58(2), 219–225. doi: 10.1093/geront/gnw137 [DOI] [PMC free article] [PubMed] [Google Scholar]
  22. Hattori, H, Hattori, C, Hokao, C, Mizushima, K, & Mase, T. (2011). Controlled study on the cognitive and psychological effect of coloring and drawing in mild Alzheimer’s disease patients. Geriatrics & Gerontology International, 11(4), 431–437. doi: 10.1111/j.1447-0594.2011.00698.x [DOI] [PubMed] [Google Scholar]
  23. Herron, R, Skinner, M, Kontos, P, Menec, V, & Bar, R. (2019). Beyond therapy: Exploring the potential of dance to improve social inclusion for people with dementia. In Hunt R & Atkinson S (Eds.), Geohumanities and health (pp. 57–70). Springer. [Google Scholar]
  24. Hill, H. (2016). Dancing with hope: Dance therapy with people with dementia. In Chaiklin S & Wengrower H (Eds.), The art and science of dance/movement therapy: Life is dance (2nd ed., pp. 219–232). Routledge. [Google Scholar]
  25. Hydén, L-C. (2013). Storytelling in dementia: Embodiment as a resource. Dementia, 12(3), 359–367. doi: 10.1177/1471301213476290. [DOI] [PubMed] [Google Scholar]
  26. Karkou, V, & Meekums, B. (2017). Dance movement therapy for dementia. Cochrane Database of Systematic Reviews, 2017(2), 1–29. doi: 10.1002/14651858.CD011022 [DOI] [PMC free article] [PubMed] [Google Scholar]
  27. Karlawish, J H T. (2003). Research involving cognitively impaired adults. New England Journal of Medicine, 348(14), 1389–1392. doi: 10.1056/nejmsb030172 [DOI] [PubMed] [Google Scholar]
  28. Kaufman, J C, & Beghetto, R A. (2009). Beyond big and little: The four c model of creativity. Review of General Psychology, 13(1), 1–12. doi: 10.1037/a0013688 [DOI] [Google Scholar]
  29. Kontos, P (2012a). Alzheimer expressions or expressions despite Alzheimer’s?: Philosophical reflections on selfhood and embodiment. Occasion, 4, 1–12. http://arcade.stanford.edu/sites/default/files/article_pdfs/OCCASION_v04_Kontos_053112_0.pdf [Google Scholar]
  30. Kontos, P (2012b). Rethinking sociability in long-term care: An embodied dimension of selfhood. Dementia, 11(3), 329–346. doi: 10.1177/1471301211421073 [DOI] [Google Scholar]
  31. Kontos, P, & Grigorovich, A. (2018). Integrating citizenship, embodiment, and relationality: Towards a reconceptualization of dance and dementia in long-term care. The Journal of Law, Medicine & Ethics, 46(3), 717–723. doi: 10.1177/1073110518804233 [DOI] [PubMed] [Google Scholar]
  32. Kontos, P, & Grigorovich, A. (2019). A critical narrative on late life creativity and dementia: Integrating citizenship, embodiment, and relationality. In Amigoni D & McMullan G (Eds.), Creativity in later life: Beyond late style (pp. 167–181). Policy Press. [Google Scholar]
  33. Kontos, P, Grigorovich, A, Kontos, A P, & Miller, K-L. (2018). Exploring relational citizenship at the intersection of creativity and dementia. In Zimmerman H-P (Ed.), Kulturen der Sorge:Wie unsere Gesellschaft ein Leben mit Demenz ermöglichen kann (pp. 543–560). Campus-Verlag. [Google Scholar]
  34. Kontos, P, Miller, K L, Mitchell, G J, & Stirling-Twist, J. (2017). Presence redefined: The reciprocal nature of engagement between elder-clowns and persons with dementia. Dementia, 16(1), 46–66. doi: 10.1177/1471301215580895 [DOI] [PMC free article] [PubMed] [Google Scholar]
  35. Kraut, A. (2010). “Stealing steps” and signature moves: Embodied theories of dance as intellectual property. Theatre Journal, 62(2), 173–189. doi: 10.1353/tj.0.0357 [DOI] [Google Scholar]
  36. Latimer, J. (2018). Repelling neoliberal world-making? How the ageing–dementia relation is reassembling the social. The Sociological Review Monographs, 66(4), 832–856. doi: 10.1177/0038026118777422 [DOI] [Google Scholar]
  37. Miller, E, & Johansson, B. (2016). Capability to paint and Alzheimer’s disease: Relationship to disease stages and instructions. Sage Open, 6(1), 1–13. doi: 10.1177/2158244016631799 [DOI] [Google Scholar]
  38. Milne, A. (2010). The ‘D’ word: Reflections on the relationship between stigma, discrimination and dementia. Journal of Mental Health, 19(3), 227–233. doi: 10.3109/09638231003728166 [DOI] [PubMed] [Google Scholar]
  39. Mitchell, G, Dupuis, S, & Kontos, P. (2013). Dementia discourse: From imposed suffering to knowing other-wise. Journal of Applied Hermeneutics, 1–19. http://jah.journalhosting.ucalgary.ca/jah/index.php/jah/article/viewFile/41/pdf
  40. Miyata, H, & Kai, I. (2009). Reconsidering evaluation criteria for scientific adequacy in health care research: An integrative framework of quantitative and qualitative criteria. International Journal of Qualitative Methods, 8(1), 64–75. doi: 10.1177/160940690900800106 [DOI] [Google Scholar]
  41. Moos, I. (2011). Humour, irony and sarcasm in severe Alzheimer’s dementia—A corrective to retrogenesis? Ageing and Society, 31(2), 328–346. doi: 10.1017/s0144686x10001054 [DOI] [Google Scholar]
  42. Noice, T, Noice, H, & Kramer, A F. (2014). Participatory arts for older adults: A review of benefits and challenges. The Gerontologist, 54(5), 741–753. doi: 10.1093/geront/gnt138 [DOI] [PMC free article] [PubMed] [Google Scholar]
  43. Nolan, M, Ryan, T, Enderby, P, & Reid, D. (2002). Towards a more inclusive vision of dementia care practice. Dementia, 1(2), 193–211. doi: 10.1177/147130120200100206 [DOI] [Google Scholar]
  44. Ophir, H. (2016). The signature of the moving body: Agency and embodied education ideologies of dance teachers. Anthropology & Education Quarterly, 47(2), 186–202. doi: 10.1111/aeq.12148 [DOI] [Google Scholar]
  45. Popay, J, Escorel, S, Hernández, M, Johnston, H, Mathieson, J, & Rispel, L. (2008). Understanding and tackling social exclusion. Final report to the WHO Commission on Social Determinants of Health from the Social Exclusion Knowledge Network: World Health Organization. Retrieved from http://www.who.int/social_determinants/knowledge_networks/final_reports/sekn_final%20report_042008.pdf
  46. Raglio, A, Bellelli, G, Traficante, D, Gianotti, M, Ubezio, M C, Villani, D, & Trabucchi, M. (2008). Efficacy of music therapy in the treatment of behavioral and psychiatric symptoms of dementia. Alzheimer Disease and Associated Disorders, 22(2), 158–162. doi: 10.1097/WAD.0b013e3181630b6f [DOI] [PubMed] [Google Scholar]
  47. Robinson, S K. (2006). Do schools kill creativity? TED Talks. Retrieved from http://www.ted.com/talks/ken_robinson_says_schools_kill_creativity/transcript?language=en
  48. Rusted, J, Sheppard, L, & Waller, D. (2006). A multi-centre randomized control group trial on the use of art therapy for older people with dementia. Group Analysis, 39(4), 517–536. doi: 10.1177/0533316406071447 [DOI] [Google Scholar]
  49. Schmoelz, A. (2017). On co-creativity in playful classroom activities. Creativity: Theories–Research–Applications, 4(1), 25–64. doi: 10.1515/ctra-2017-0002 [DOI] [Google Scholar]
  50. Shi, B, Cao, X, Chen, Q, Zhuang, K, & Qiu, J. (2017). Different brain structures associated with artistic and scientific creativity: A voxel-based morphometry study. Scientific Reports, 7, 108. doi: 10.1038/srep42911 [DOI] [PMC free article] [PubMed] [Google Scholar]
  51. Simmel, G, & Hughes, E C. (1949). The sociology of sociability. The American Journal of Sociability, 55(3), 254–261. doi: 10.1086/220534 [DOI] [PubMed] [Google Scholar]
  52. Skinner, M W, Herron, R V, Bar, R J, Kontos, P, & Menec, V. (2018). Improving social inclusion for people with dementia and carers through sharing dance: A qualitative sequential continuum of care pilot study protocol. BMJ Open, 8(11), e026912. doi: 10.1136/bmjopen-2018-026912 [DOI] [PMC free article] [PubMed] [Google Scholar]
  53. Slaughter, S, Cole, D, Jennings, E, & Reimer, M A. (2007). Consent and assent to participate in research from people with dementia. Nursing Ethics, 14(1), 27–40. doi: 10.1177/0969733007071355 [DOI] [PubMed] [Google Scholar]
  54. Spano, R. (2005). Potential sources of observer bias in police observational data. Social Science Research, 34(3), 591–597. doi: 10.1016/j.ssresearch.2004.05.003 [DOI] [Google Scholar]
  55. Swinnen, A, & de Medeiros, K. (2018). “Play” and people living with dementia: A humanities-based inquiry of timeslips and the Alzheimer’s poetry project. The Gerontologist, 58(2), 261–269. doi: 10.1093/geront/gnw196 [DOI] [PubMed] [Google Scholar]
  56. Warburton, E C. (2011). Of meanings and movements: Re-languaging embodiment in dance phenomenology and cognition. Dance Research Journal, 43(02), 65–84. doi: 10.1017/S0149767711000064 [DOI] [Google Scholar]
  57. Zeilig, H. (2014). Dementia as a cultural metaphor. The Gerontologist, 54(2), 258–267. doi: 10.1093/geront/gns203 [DOI] [PubMed] [Google Scholar]
  58. Zeilig, H, West, J, & van der Byl Williams, M. (2018). Co-creativity: Possibilities for using the arts with people with a dementia. Quality in Ageing and Older Adults, 19(2), 135–145. doi: 10.1108/qaoa-02-2018-0008 [DOI] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

gnaa129_suppl_Supplementary_Material
Click here for additional data file. (18.7KB, docx)

Articles from The Gerontologist are provided here courtesy of Oxford University Press

RESOURCES