Disrupting stigma associated with dementia and dance through documentary film

Abstract

Background

Dance is a powerful means to reduce stigma associated with dementia by promoting, preserving, and sustaining human flourishing. However, dance is rarely adopted for this purpose in the context of dementia care; as with other art programming, dance is primarily adopted in dementia care to achieve individual therapeutic or functional needs and outcomes rather than to support access to the art form itself and social engagement through co-creativity. Dance also rarely features in culture change initiatives to raise critical awareness of stigma-related inequities and to foster social justice. In order to promote broad community awareness building, education, and practice change regarding the value of dance for life enrichment, we developed and evaluated a short documentary film – Dancer Not Dementia – about dance for people living with dementia.

Methods

Participants viewed Dancer Not Dementia and participated in either an interview or a focus group discussion immediately following viewing the film and then again 8–12 weeks later. Participants included people living in residential or long-term care, family carers, practitioners, healthcare managers, members of the dance community, government and policy makers, and members of the general public with no relationship to dementia.

Results

Our thematic analysis highlights the ways that Dancer Not Dementia challenged stigma by supporting participants’ capacity to see individuals living with dementia as relational as captured in the themes ‘seeing interconnectedness’, ‘new understandings of dance and dementia’, ‘inspiring change’, and ‘aesthetic qualities of the film’.

Conclusion

This film is positioned to inspire reforms to policy and practice that are urgently needed to challenge entrenched and oppressive attitudes and social relations, and support more inclusive and relational approaches to caring.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-026-26881-9.

Background

Dementia is considered to be the most frightening condition facing the aging population, a much-feared stigmatizing label that carries with it a sentence of social death [1, 2]. This collective representation is part of a larger stigmatizing ‘tragedy narrative’ of aging that presumes that people living with dementia are less than human; one of the most prevalent cultural metaphors of dementia is that it is “a living death” [1]. To grasp the harm imposed by assumptions of existential loss, one only has to consider the conditions of life and care in so many residential and long-term care (LTC) settings [2–4]. These settings are dominated by the biomedicalization and the pharmaceuticalization of neuropsychiatric symptoms [5–7] despite evidence that has linked psychotropic medication with serious adverse drug reactions [5, 8–10], increased risk of negative health outcomes (e.g. stroke, venous thromboembolism, myocardial infarction, heart failure, fracture, pneumonia, and acute kidney injury) [11], increased risk of all-cause mortality [12], and impaired quality of life [13]. In these settings, care practices are often reduced to basic physical tasks such as eating, toileting, and feeding [3, 4, 14], and there are few opportunities offered to pursue meaningful relationships and enriching activities [3, 15]. With the biomedicalization of dementia, the arts are primarily adopted as ‘curative’/an ‘elixir’ or a method with which to manage “behavioural challenges” by occupying individuals [16, 17], which restricts opportunities for engagement to ‘prescribed’ activities at structured times, places, settings, and contexts [2, 17–19]. While there is evidence that positive outcomes can result from prescribed arts programming [20], there has been qualitative research that has suggested that such a structured approach can inadvertently control and contain the creative self-expression of people living with dementia [15, 16, 21, 22]. For example, music programs that are modeled on passive listening rather than active engagement in co-constructing or playing instruments have been argued as being less supportive of creative self-expression [15, 17]. A similar argument has been made about dance programs that focus on structured repetition of a set of choreographed movements rather than encouraging participants to express themselves through movement in their own unique way [22, 23]. There are certainly exceptions to this; for example, some music and dance therapists support creative self-expression through improvisation, and tailoring engagement to the pace, time, and space needed for musical, physical, verbal, and emotional self-expression [24, 25].

In contrast to the art-for-therapy approach, participatory arts involve professional artists and other creative professionals who design and deliver programs with the primary goals of supporting access to the art form itself and social engagement through co-creativity rather than to achieve individual therapeutic or functional needs and outcomes [18, 26, 27]. Another distinguishing feature of participatory arts is the prioritization of spontaneous interaction and deep engagement, and the active creation of art and/or art making itself. Such engagement with the arts for life enrichment has been argued to be crucial for human flourishing [3, 18, 19, 23, 28]. Thus, proponents of culture change have argued that such programs have enormous potential to reduce stigma associated with dementia by supporting the rights of people living with dementia to experience these fundamental benefits of engagement with the arts [3, 17, 18, 29, 30]; depriving people living with dementia of experiencing the enrichment that participating in such programs brings is a form of discrimination based on cognitive impairment [2, 15, 18].

Education to reduce stigma associated with dementia is a priority and the use of arts-based approaches, specifically film, is increasingly advocated to influence public health given that it is an engaging and familiar medium that transcends diverse literacy levels [31, 32]. ‘Cinemeducation’ or ‘edutainment’ refers to the use of film to educate health and social care practitioners [33–37]. This primarily entails the use of short informational types of videos (e.g., interviews with people living with mental illness or health care providers who work in this area), documentaries, and mass media feature films [38, 39]. Fiction film has become one of the most influential vehicles for the popularization of dementia because of its consumption in the guise of entertainment. Yet much of this cultural production of dementia tends to draw heavily on familiar tropes such as violence and aggression, extreme dependency on heroic carers, catastrophic prognosis, and existential loss and obliteration [33, 36, 40]. Rarely is documentary film used in an emancipatory way within a medical/health education context to raise critical awareness of inequities and to foster social justice. Given that audiences may uncritically absorb stereotypes, they can unwittingly reinforce rather than resist stigmatization and thereby reproduce fear and contribute to social othering of persons living with dementia [36, 40]. Thus, there is a pressing need for the development of alternative representations that challenge stigma and offer a fuller and more complex understanding of dementia, including the potential for joy and living well.

With an interest in drawing on the interactive, educational, and emancipatory potential of film, we created a short documentary titled Dancer Not Dementia [41]. This film is a collaboration between KITE Research Institute and Canada’s National Ballet School (NBS). It was based on research our team has done about the impact of an innovative participatory dance program – Sharing Dance Older Adults (SDOA) [23, 42]. Co-developed by Baycrest and NBS, the program makes the art of dance accessible to older adults with a range of physical and cognitive abilities, including people living with dementia, by prioritizing creative self-expression and social engagement. Much of the offerings in the dance program come from the tradition of storytelling through movement and mime that is fundamental to classical ballet. While the program itself is not a lesson in ballet by any means, key elements built within the structure of the classes come from NBS’ base in the ballet tradition. For example, eye-line is an important mode of communication in the narrative component of ballet. Similarly, SDOA dance teachers cue dancers to connect with themselves and with others by following their movements with their eyes and making eye contact when offering a gesture toward another dancer [43]. The documentary was filmed in two LTC homes in Toronto, Canada and captures the stories and experiences of dancers living with dementia and the health practitioners who participated in the program, as well as reflections by experts in the health and arts spaces about stigma and the power of dance to support flourishing of the person.

Our focus here is a study we conducted to explore the following: the impact of the film on the knowledge/attitudes regarding the importance of participatory forms of dance for social inclusion, quality of life, and life enrichment; its effectiveness in challenging stigma, and in educating about, motivating or sustaining dance for people living with dementia; and the artistic aspects of the film (e.g., music, story, aesthetics) and contextual factors (e.g., resources, accessibility) that influenced the uptake of its key messages.

Methods

Study design and participants

A qualitative design using interviews and focus groups was employed given that qualitative methods facilitate more nuanced and expansive understandings of impact that account for interpretation, emotion, commitments, and embodied experience. Participants viewed Dancer Not Dementia and participated in either an interview or a focus group discussion immediately following viewing the film and then an interview again 8–12 weeks later. The interview/focus group guides were developed for this study (See Supplementary Materials) and study participants were not the same individuals who are featured in the film.

Recruitment was based on self-identification according to one of the following inclusion criteria: (1) living in a residential or LTC setting, including those with dementia or mild cognitive impairment; (2) being a family carer of a person living with dementia; (3) health and social care practitioners; (4) healthcare managers, directors, or administrators; (5) members of the dance community (e.g., teachers, students); (6) policy makers; or (7) members of the general public who are not a family carer or practitioner working in dementia care. In addition, we excluded any participant who was otherwise eligible if they were unwilling to take part in the research component of the study (i.e. only interested in watching film) and/or were unable to understand or speak English.

People living in residential or LTC, family carers, practitioners, and managers were recruited from a residential and a LTC setting in urban central Canada. The residents of these settings were introduced to the study by care staff. Family carers, practitioners, and managers were recruited via study flyers and email lists at those settings, as well as across Canada through flyers, social media, advertisements in newsletters, and email lists. The residential and LTC settings from which people living with dementia, family carers, and care staff were recruited were not the same settings where the documentary was filmed. For members of the dance community and the general public, social media and study flyers were used to recruit participants. For policy makers, purposive/convenience sampling was used; team members reached out to their contacts at various government and non-government organizations.

In total, 64 participants were recruited: (1) people living in residential or LTC (i.e. mild cognitive impairment, dementia, no diagnosis) (n = 14); (2) family carers of persons living with dementia (n = 10); (3) health and social care practitioners (e.g., personal support worker, recreationist) (n = 12); (4) healthcare managers (n = 10); (5) members of the dance community (e.g., teachers, students) (n = 7); (6) policy makers in government or non-governmental organizations (n = 3); and (7) members of the general public who are not a family carer or practitioner working in dementia care (n = 8).

See Table 1 for demographics of participants by group and Table 2 for a breakdown of participation by group and data collection.

Table 1.

Participant demographics by group

Group	Age Range	Gender	Education	Race	Years of Experience with Dementia
People living in residential/long-term care (N = 14)	66–75, n = 3 76–85, n = 3 > 86–96, n = 8	Female, n = 8	University degree (undergraduate/ graduate), n = 6	Racialized, n = 1 White, n = 13	< 1 year, n = 8 > 10 years, n = 3 Prefer not to say, n = 3
Family carers (N = 10)	46–65, n = 8 66–85, n = 2	Female, n = 8	University degree (undergraduate/ graduate), n = 8	Racialized, n = 5 White, n = 4 Prefer not to say, n = 1	1–5 years, n = 3 6–10 years, n = 5 > 10 years, n = 2
Practitioners (N = 12)	18–35, n = 3 36–45, n = 3 46–55, n = 3 56–65, n = 3	Female, n = 10	University Degree (undergraduate), n = 7	Racialized, n = 6 White, n = 6	< 1 year, n = 2 1–5 years, n = 4 6–10 years, n = 3 > 10 years, n = 3
Managers (N = 10)	36–45, n = 3 46–55, n = 4 56–65, n = 3	Female, n = 9	University Degree (undergraduate/ graduate), n = 6	Racialized, n = 2 White, n = 8	6–10 years, n = 3 > 10 years, n = 7
Dance community (N = 7)	26–55, n = 3 56–76, n = 4	Female, n = 7	University Degree = (undergraduate/ graduate), n = 4	Racialized, n = 2 White, n = 5	< 1 year, n = 2 1–10 years, n = 2 > 10 years, n = 2 Prefer not to say, n = 1
Policy makers (N = 3)	36–55, n = 3	Female, n = 3	University Degree (graduate), n = 3	White, n = 2 Prefer not to say, n = 1	> 10 years, n = 2 Prefer not to say, n = 1
General public (N = 8)	26–45, n = 3 56–75, n = 3 76–85, n = 2	Female, n = 8	University Degree (undergraduate/ graduate), n = 6	Racialized, n = 1 White, n = 7	< 1 year, n = 3 1–10 years, n = 2 > 10 years, n = 2 Prefer not to say, n = 1

Table 2.

Focus Groups and Interviews by Group

Group	Post-screening		Follow-up
	Focus Groups	Interviews	Interviews
People living in residential/long-term care (N = 14)	Focus Group #1, n = 5 Focus Group #2, n = 4	n = 5	n = 7
Family carers (N = 10)	Focus Group #1, n = 4	n = 6	n = 3
Practitioners (N = 12)	Focus Group #1, n = 3 Focus Group #2, n = 4	n = 5	n = 4
Managers (N = 10)	Focus Group #1, n = 4 Focus Group #2, n = 5	n = 1	n = 6
Dance community (N = 7)	Focus Group #1, n = 3 Focus Group #2, n = 4	n/a	n = 6
Policy makers (N = 3)	n/a	n = 3	n = 2
General public (N = 8)	Focus Group #1, n = 3 Focus Group #2, n = 4	n = 1	n = 5

Ethics approval and consent to participate

In accordance with the Declaration of Helsinki, this study received ethical approval from the Research Ethics Boards of the University Health Network and Baycrest (Clinical Trials Ontario # 4167). Informed consent to participate was obtained from all participants who provided their consent either in writing (in-person or by email) or online through a secure REDCap platform [44, 45].

Analysis

Interviews and focus groups were digitally recorded, transcribed verbatim using Google Cloud, then corrected against the audio recordings and de-identified to ensure anonymity. Our analysis followed the principles of thematic analysis [46, 47] and focused on knowledge/attitudes regarding dementia and the importance of dance for social inclusion and life enrichment, real world application of this knowledge, and the ways the aesthetic qualities (e.g., people featured, music, story) of the film have contributed to change. This process began with an inductive descriptive process of sorting and defining the data whereby the first two authors read and re-read the transcripts and led the development of an initial set of descriptive codes. These descriptive codes along with text segments were then shared with the rest of the authors, collectively discussed, and further refined. These initial codes were then organized into categories that captured the semantic content of the data, and then were further refined and organized into themes.

To ensure methodological rigour and trustworthiness of the analysis [46], we used the following strategies: established rapport with participants; demonstrated respect; clarified confidentiality and anonymity procedures; and expressed our interest in capturing any and all types of impacts/experiences, which are strategies consistent with recommendations to minimize the occurrence of participants answering interview/focus group questions in ways that they believed was expected or preferred [48]; multiple authors participated in data analysis; a dependability audit was kept that involved a methodologically self-critical account of research conduct (e.g., reflections on data collection, documenting and discussing with the team theoretical assumptions, explanations of codes and themes, methodological and analytic procedures); frequent reviews were made of the audit by the research team; and providing sufficient detail to allow outsider assessment of the ‘fittingness’ of the findings with other contexts.

Results

Our analysis highlights the ways that Dancer Not Dementia challenged stigma by supporting participants’ capacity to see individuals living with dementia as relational (i.e. embodied and interconnected with the social world). This is captured in the following themes and subthemes: (1) ‘seeing interconnectedness’, which focuses on the ways in which dance fostered deep connections in all who participated in the dance, as captured in the subthemes (a) ‘embodied interactions’, (b) ‘social interconnectedness’, and (c) ‘connection to self’; (2) ‘new understandings of dance and dementia’, which highlights how the film fostered the ‘valuing of dance’ in the context of dementia and ‘challenging stigma’ associated with dance and also with dementia; (3) ‘inspiring change’, which focuses on changes inspired by viewing the film, specifically participants’ practices; and (4) ‘aesthetic qualities of the film’, which describes the aesthetic qualities that deepened engagement and learning, and that prompted change.

Seeing interconnectedness

Participants’ comments reflected the effectiveness of Dancer Not Dementia in bringing sociability through dance to the forefront. This included recognition of the ways in which deep connections were expressed in the film. For example, eye contact as form of ‘embodied communication’, which is emphasized in Sharing Dance as a means of social connection, was a powerful means of communication that participants reflected on in the film. The following quote aptly captures this:

[T]he term was called “eye line” … eye contact with one another. And I thought that that was an excellent point that often does get perhaps missed when it comes to communicating. So, I thought that was an interesting part of … [Sharing Dance] itself to help foster those connections. (post-screening – practitioner 2)

Other forms of ‘embodied interactions’ between the dancers living with dementia were observed as well. The following quotes capture this well in terms of touch and gestures and other bodily forms of expression:

Moving … in synchronous ways together … you get … that ensemble energy … the movements … were like … reaching out that felt like touching fingers. Reaching out, you know, or looking around at each other. There were particular movements that I thought, “wow” … they’re so delicate. (post-screening – manager 9)

So communication can be a challenge. But [dance] created this, you know, universal language that allows them to engage with other people and build connections without having to actually speak … It’s through gestures and I think that is extremely powerful. And that’s an important takeaway (post-screening – general public 5)

I could see the connection, I could see them connecting. And you just watch the bodies change … An opening … a freeing, a relaxing … you watch the body start to smile. (follow-up – family carer 1)

Some participants noted the intimacy of some of the embodied interactions observed:

There’s this part of the movie that there’s this lady at one end [of the room] and this … man at the other end, and they’re sending kisses to each other. (post-screening - family carer 7)

There was this couple … dancing together … And they made eye contact … And he just, like, really gently touched her cheek … and it was, like, look at this beautiful human moment. Like anyone experiences on any day with somebody that they love. Like there’s no difference … this is a universal human experience. (post-screening – general public 8)

The embodied communication was so powerfully perceived that the following participant went as far to suggest that sound in the film was unnecessary in order for them to follow the meaning conveyed:

[The dancers] found a way to communicate … That they didn’t have before … By dancing … Could almost watch that film without any sound …Without any sound it made sense to me … you could feel it … Body language. (post-screening – person living in residential/LTC 9)

‘Embodied interconnectedness’ was linked to the subtheme ‘social interconnectedness’, in that the former was seen in the ways that the practitioners engaged with the dancers and their own emotions. For example, the following family carer was struck by the joy expressed by a personal support worker in the film and the deep connection she had with one of the dancers:

There is one young woman who was the staff at one of the long-term care homes, where she talked about the tremendous joy that she has when she dances. That struck me because her whole body sang joy while she was saying it … and she’s the one who connected to the, the woman in the wheelchair who, who could barely move … that deep connection … and what tremendous joy… and pride in supporting that … dancer in movement. (post-screening – family carer 1)

Seeing social interconnectedness and the relational impact of dance on the staff was sustained over time. For example, a participant at follow-up noted “there’s like this real enlightenment and positivity that the dancer is giving to [the practitioner] as well” (follow-up – dance community 4). Also when reflecting on the connections between the practitioners who work in the LTC homes and the dancers, there was a qualitative difference noted between these connections and the focus on ‘assistance’ that one would more typically find in direct care interactions:

I was able to watch … the faces of the staff, which was also lovely, it was nice to see the connection, not as “I’m providing you with assistance”, but “I’m dancing with you.” That’s how I perceived it … [they were engaged] … they were touching each other … the dancers … [but] this is a kind of touch that isn’t clinical. It’s … just human to human … you’re dancing together. So it’s a kind of touch that I suspect is not common in people’s lives. (post-screening – policy maker 1)

Rather than just doing something like eating, medication, taking a bath … it has more, much more deeper connection. (post-screening – family carer 10)

The dance instructors, too, were recognized for their contributions to the social interconnectedness that was observed in the film. For example, many participants reflected on the expressed gratitude to the dancers for their creative offerings:

[The instructor] … was saying, “that was beautiful”, and “thank you” and really honouring that individual that she was talking to … there was just so much love I felt (post-screening – manager 2)

This continued to be noted by participants 8–12 weeks after seeing the film:

[S]eeing how the, the facilitators greeted each person individually and thanked them at the end … this is a moment of presence with these people and sort of gratitude for that shared experience. And just seeing the power of it done by someone else reminded me that it is a powerful moment, and that it’s significant … And I think that definitely stayed with me … acknowledging the … personhood … saying like we experienced this together thank you for this. (follow-up – practitioner 1)

Finally, ‘seeing interconnectedness’ also included the subtheme of ‘connection to self’, which includes participants’ reflections on the dancers’ connections to their own selves. For example, a practitioner reflects on a scene in the film where the dancer, Iluminada, describes how engagement with dance helped her to overcome her inferiority complex:

She said she has an inferiority complex. And when she was with everyone and doing, you know, the dance … she said she … loses her inferiority complex … when she was doing that, which is huge, right? Like it’s beautiful … [I felt] like kind of teary-eyed … I found it very moving. (post-screening – practitioner 11)

Another dancer in the film, Sidney, similarly prompted reflections by participants about his insights regarding his own identity and the ways in which dance helped him to discover past desires of his. In the film, Sidney reflects with some regret that in his younger years, despite his love for dance, he was discouraged to pursue it because of gendered assumptions about the art form.

I was very moved … when the fellow [Sidney] spoke about being a younger person and loving dance and loving movement and wanting to explore it more, but because of being a man was not given the opportunity. And this [program] triggered that longing [but] gave this person, you know, a chance to experience something that was long lost. (post-screening – manager 9)

Seeing connections to themselves in the film also prompted for some participants new awareness of aspects of themselves. The following reflections of a person living with dementia is particularly noteworthy of this:

It made me, it made me aware of some of my capabilities. (post-screening – person living in residential/LTC 9)

New understandings of dance and dementia

Though dance is receiving increasing attention in dementia care for its potential to support intersubjectivity, and embodied or somatic expression [49, 50] for some participants, ‘valuing dance’ in the context of dementia was entirely new:

…I know the importance of movement and exercise in any way, shape, or form, you know…according to someone’s ability. But I never thought of [dance] in the context of people with dementia. (follow-up – general public 3)

For others, it is the value that dance can bring to the lives of people living with dementia that was new learning they gained from seeing Dancer Not Dementia and that was sustained over time. For example, in a follow-up interview, a participant from the general public reflected on the creativity and sociability that dance offers:

[Y]our film is the first film … I have seen that dance can actually make somebody’s life creative and more meaningful and more sociable. (follow-up – general public 7)

Another important subtheme – ‘challenging stigma’ – focuses on stigma associated with dance. For example, participants from the dance community spoke of how the film challenged assumptions that ballet is only for professional dancers and fostered for them a more inclusive understanding of this art form:

[A]s a retired professional dancer … who came up through the studio, you know, competitive circuit … with my technical trained eye … very judgmental, [laughs] critic’s eye. … I mean, this is the elite of the elite … a classical form of dance [laughs] … I just loved that [the film] showed how dance isn’t exclusive and elitist … So, I think that the fact that Canada’s National Ballet School is participating in this is really important for dance … As an art form … as a means to connect with one another … as a community. (follow-up – dance community 6)

[I]t knocked down some of my … it dissolved some of my … expectations of what dance should be. (follow-up – dance community 5)

Participants also spoke of how the film challenged their stigmatizing assumptions about dementia, particularly that cognitive impairment leads to an erasure of the person, and fostered new understanding of the humanity of people living with dementia. This is aptly captured in the following reflections:

[S]ometimes we think of people with dementia that they can’t do anything, that they can’t understand any, you know? But through the dance, through music, they connect. They’re able to express themselves and feel that they’re not inferior … It goes to shows that they can communicate through actions … by dancing. Even though they have difficulty…they have dementia, but they can express themselves. And feel good about themselves and smile and be happy. (post-screening – person living in residential/LTC 10)

I think that it also proves … that, yes, stigma does exist, because I carry the stigma … the belief system that people with dementia can’t communicate, can’t dance, can’t whatever. So … the movie, the film worked, because it, it showed me I did carry stigma towards dancers with dementia. They are dancers. They are not just dementia. (post-screening – dance community 6)

This new understanding facilitated a shift from thinking about dementia only in terms of fear and loss, to seeing possibilities for living well with dementia:

If/when I’m in a position where I am, you know, in front of somebody … that has dementia, I won’t be fearful. I’ll have a better understanding of that person as a person. As a human being. And I will have a vehicle to communicate with them. (post-screening – dance community 5)

Well, it’s so positive, so joyous. Such a positive spin on something that [laughs], it’s true, we fear it … Everybody’s scared of [laughs] dementia. [The film] soothes the soul and it makes you see the possibilities of positive of something that we think [as only] destructive. (post-screening – general public 7)

This shift from tragedy to possibilities in turn fostered sustained compassion towards the dancers in the film and beyond this to other people living with dementia:

[W]hen I first started watching the, the video, I felt a great sense of pity. And then when I watched … how much they enjoyed dancing, [and] it turned from pity to compassion … I felt pity was an insult … or an insulting thought or word to use. And I just felt compassion for them … how much they enjoyed it, and how much they tried to participate. (follow-up – person living in residential/LTC 13)

[T]he most important message I took from the film was that people … when somebody is put into an institution … for care, that doesn’t mean close the door … and let them just wilt away … They are still to be received as a human being, to be treated with love and respect and kindness, to be socially engaged and active where and if possible. (follow-up – general public 3)

Inspiring change

Changes in patterns of relating to people living with dementia were discussed by the participants at both post-screening and in the follow-up interviews. For some participants, the film prompted a desire to adopt a dance program as distinct from exercise programs, which are more common.

[W]e do have exercise wellness programs that are facilitated by a physiotherapist, but we don’t actually have dance per se … seeing this video and seeing the joy in everyone from the residents to the staff …seeing that value and seeing how that would definitely be something that … we would like to implement … (post-screening – manager 8)

Others were inspired to engage their family members with the film in order to encourage the incorporation of dance in their lives. For example, the following family carer describes how seeing the film prompted her to speak with practitioners at the LTC home where her mother lives about encouraging her mother more to engage in the music classes:

I felt I had enough support from the data and the information I saw in that documentary to bring it to the core manager and others there. I felt empowered to get my mother into more music classes there … And I convinced the social worker, I didn’t convince everyone. But I convinced enough that my mother would be getting out of her room … So I [felt] empowered definitely to stand up for my mom’s rights. My mom maybe doesn’t have a voice but I do. So that helped me bring it forward in writing to them … So I wouldn’t have [otherwise] been - not pushy - but insisted that more attention be given to her because of her mobility issues and her inability to talk or interact sufficiently. Because you see them withdrawing, they go into a dark place … but music kicks them out of that. And that movie made it, the documentary made it very clear … and it was beautiful. (follow-up – family carer 8)

I’m enjoying the fact that I’m incorporating some of what I’ve learned in terms of the movement … But, you know, [the resident] dance. I dance with her. I hold her hand. And we dance. Once I come into her room and she’s all smiles. So, I, I believe that um, to a large extent I am incorporating what I’ve learnt. And um I’m just having fun doing what I do. (follow-up – practitioner 8)

Referring to the inclusivity of SDOA, some critically reflected on their own assumptions and related practices regarding who should or should not participate in dance:

And in that opening scene where one of the dancers says, “me, a dancer”? My immediate reaction was like, yeah, why not? Like, why would you ask that, right? And of course they ask it because the dance world has always been defined by, you know, being a professional, being the best, being this or that. But that’s not what it has to mean. And, and I think a lot of the times when someone like me hyper observes someone’s technique, it’s ‘cause that was what was done to me when I was a dance student. So, for me it meant I can make the change to not do that to someone else now, right? [emphasis expressed by participant] That’s what I think this one really did to me, was that I can be that good change to make the dance world more inclusive. (post-screening – dance community 4)

[N]eed a reminder of things; you know, look what’s possible and where are we underestimating folks or where are we not giving people the chance to be more creative because we’re assuming that maybe they can’t be, or they wouldn’t be able to follow, or what assumptions are we making. So … seeing people with a lens for possibility and creativity, especially people within cognitive care … Where am I assuming things? Where am I limiting people? Where am I not understanding what people can offer or have been through? So, I think [the film] was really highlighting a lot of that. (follow-up – practitioner 1)

Participants also reflected on the embodied and expressive nature of dance and how this could inform other aspects of their practice to enhance communication and interpretation with people living with dementia. The following quote from a music therapist is particularly noteworthy of this:

I think for me, it’s been incorporating movement a lot more into my work … and … it was started by watching this [film] … it’s definitely been coming up more and more for me kind of consistently of saying, “how can I incorporate different ways of moving or taking up space?”… even with the instruments I’m choosing, if … I play a drum that’s kind of in this plane of motion what can we do that’s kind of in a different plane? Or … in a different style of movement, just kind of thinking about different shapes and movement a little bit more than I would have before. It’s not that I’m doing, you know, full-on dance for my sessions, but just incorporating that idea of freeing people up to, to move in space and use their body that way … and myself too, even as I go through sessions. (follow-up – practitioner 1)

Aesthetic qualities of the film

There was an important interrelationship between the aesthetic qualities of Dancer Not Dementia that were key to how participants engaged with the film and the impact it had for them. These included: having the dancers speak directly into the camera; conveying their engagement in the artistry of dance; referring to people living with dementia as “dancers” instead of focusing on their diagnosis; and the use of music to deepen engagement.

Many participants reflected on the power of hearing directly from the dancers themselves about their dance experiences; these were filmed in an interview format with the dancers looking directly into the camera, which was an artistic device to facilitate audience engagement with their first-hand stories and connection with the dancers themselves. The following quotes are illustrative of this:

[W]e don’t tend to think that people with dementia can give us any real stories … But I mean … participants were interviewed and they were able to express how they felt about what they were doing, you know. And we tend not to want to do that because we think they’re “gone.” (post-screening – practitioner 12)

[P]eople with dementia rarely are seen to have a voice, to be able to speak for themselves, to be able to be articulate, and tell their stories the way they want to. [The interviews with the dancers] break [those] barriers. (post-screening – policy maker 1)

Participants also spoke of the impact of seeing the dancers engage in dance, which was another artistic choice that was intended to further facilitate connection, engagement and impact. The dance scenes provided a powerful visual that conveyed creativity, community, and emotional engagement, all of which highlighted for participants capacities that people living with dementia are not presumed to have:

[The] take away from the film is that people with dementia are capable. And they can do different things, even if they have not done them [before]. And that dance and music can help to remove some stigma … It can help people with dementia to socialize, create new connections, and help them to feel good about themselves. (post-screening – family carer 10)

These scenes importantly captured the emphasis of SDOA on an artistic experience, which is aptly captured in the following comments of a policy maker:

I think it’s the first time I’ve actually seen … taken seriously … an art form for people with dementia as opposed to an activity for people. I thought [what] was different here was showing … dancers, rather than people performing a physical activity … So, what I saw was … people as artists and, and how they then spoke about … themselves as artists, as dancers. And, and new artists in some cases. Or artists who never felt like that was available [to them]. (post-screening – policy maker 3)

The creative and relational capacities of the dancers were so prominent in the participants’ reflections that some even commented that dementia was not visible to them:

I think the strongest message was that people with dementia have a lot of capacity … And we can see that the people in that group … they were talking, they were responding, they were reflecting. You know, there was nothing about the group in particular that said, you know that these people have dementia. (post-screening – practitioner 3)

A policy maker explains this in terms of the emphasis in the film on dance rather than dementia:

“You’re taking away that medicalization and you’re … dancers first”. They further noted that “dance doesn’t have anything to do with dementia, right? It doesn’t … you don’t have to bring your dementia to the dance. You can just be a dancer … it can give a person a new narrative about themselves” (post-screening – policy maker 3)

The notion of ‘a new narrative’, was also reflected in participants’ comments about the power of referring to individuals living with dementia as ‘dancers’ rather than as ‘dementia patients’, which was yet another artistic choice which entailed a graphic overlay placed in the lower portion of the screen to provide context and information about the person speaking:

It broke down … the title that most people are introduced to you as, you know, ‘dementia patient’ first and foremost. And it … gave the dancer a validation for what they are, what they’re doing. A sense of belonging … not to be labeled as somebody with dementia. (post-screening – practitioner 2)

Finally, the effectiveness of the film in conveying the creative and relational capacities of the dancers was described by participants as being supported by the artistry of the film itself, specifically the use of uplifting piano music that created a sense of surprise and defamiliarization given how unexpected that was in a film about dementia. The following is illustrative of this and importantly demonstrates the sustained impact this had:

But I think the way, and I’m not a filmmaker, so excuse me if I’m getting the terminology wrong, [laughs] but the way the piano and the sound design was woven [in]. Um, it was uplifting music. So auditorily, like we were dealing with a super heavy, heavy topic, but whoever designed the sound to have this really uplifting light piano music [laughs] and piano as a background. And I mean, I guess the pianist is, is the accompanist in the dance classes so that was just an extension, a natural extension … But that juxtaposition of a very, very heavy subject with this really light, [laughs] airy piano music. It just, it was so powerful because of that juxtaposition of heavy and light … my entering the film was, you know, ‘cause I was like, “oh, dementia.” Like, really I don’t want to spend 20 minutes with dementia. And then like even in the first, you know, the first, the first scene, like, I was like, wow, we’re not in Kansas anymore. Like this is not [laughs] … going to be … a really heavy, depressing topic. (follow-up – dance community 6)

Discussion

Our evaluation of Dancer Not Dementia suggests that it is an effective public health strategy for decreasing the stigma associated with dementia and for promoting more inclusive and meaningful engagement of persons living with dementia. Specifically, we found that the film supported the sustained capacity of study participants to see individuals living with dementia as relational beings – as embodied, communicative, and interconnected with the psycho-social world through their verbal and non-verbal emotive and creative offerings. That the film was effective in challenging dominant stigmatizing beliefs and attitudes about dementia is significant, given calls for the adoption of a new relational ontology and ethic of care for persons living with dementia [2, 27] that makes explicit the importance of embodiment for self-expression, and the centrality of interconnections among individuals and broader social structural forces [2, 18, 51]. Despite the recognition of the importance of relational caring to quality care and quality of life, translating relational ethics into practice has proven difficult and has not had sustained impact [52, 53]. Thus, our findings importantly suggest that Dancer Not Dementia is positioned to respond to urgent calls for culture change, which include promoting relational caring.

Our qualitative design not only facilitated exploration of changes in knowledge and attitudes, but also of how such changes were sustained and translated over time into real world application in terms of patterns of relating to people living with dementia. This ranged from the desire to adopt a participatory dance program or to incorporate dance into their lives and those of family members living with dementia, to more broadly draw on the embodied and expressive nature of dance to enhance communication with people living with dementia. These findings are significant given that evaluation research has primarily focused on the impact of film on knowledge and attitudes, with scant attention to how film can lead to less stigmatizing interpersonal relations [35, 54–57].

We not only identified important impacts of Dancer Not Dementia but also identified the generative mechanisms of the film, specifically related to aesthetic qualities of the film, which were fundamental to the ways participants engaged with the film, learned from it, and were moved by it to enact change. Little evaluation research has distinguished the aesthetic qualities of film from its content [33, 58], and yet exploring engagement with the aesthetic qualities of the film proved critical to our understanding of the particularities of film that work so well as a pedagogical strategy. Realism was an important aesthetic quality that was prominent in participants’ reflection on the power of seeing the dancers and the staff engage in the program and hearing directly from them about their experiences. Indeed, as Grierson notes in Nichols, an important aesthetic of documentary film is its “creative treatment of actuality”, in that this genre of film offers distinct and creative visions of historical reality [59]. The realism of Dancer Not Dementia helped audiences to see themselves in the individuals portrayed, which then facilitated identification with what is conveyed, and thereby supported suspension of disbelief and facilitated imagination of the possibilities of what is depicted for LTC. Moreover, in featuring interviews with people living with dementia telling their own story and gazing directly at the camera, the film restores to them “epistemic justice” by recognizing them as reliable narrators who can give a meaningful account of themselves and their lived experience [36, 60]. Such recognition is further enhanced by reference in the film to persons living with dementia as ‘dancers’ rather than as ‘dementia patients,’ giving prominence to their artistry and not their dementia. These aesthetic qualities create autobiographical narratives that are strikingly different from the predominance of life stories of people living with dementia that are told in other people’s words (e.g., by their family member, care practitioner). Further, as Capstick [61] argues, the uncensored nature of first-person narratives of people living with dementia have a visceral quality which makes the sensibility of their words hard to ignore or dismiss.

Seeing the shared experience of dance among persons living with dementia, family carers, and practitioners was also identified as facilitating change by confirming the vitality of the dancers through embodied, playful, and social engagement, and allowing for these strengths to be perceived and valued. The active engagement of persons living with dementia is prioritized in the film, which is in stark contrast to the passivity that is dominant in popular visual representations of dementia. For example, a recent review demonstrates how most visual representations of dementia contribute to stigma by attributing greater power to viewers (i.e. high or non-frontal angles) and restricting people living with dementia to passive poses or to close ups of “fragile hands or damaged brains” [40].

Rarely is dance used as a form of knowledge production in dissemination, which misses the elusive embodied knowledge of the participants [62]. Featuring engagement in dance in the film invites the audience into the dance space, making the dancers’ embodied knowledge tangible and visible, which proved to be so powerful in engaging participants and effecting change. Further, a strength of the film is that it features a highly participatory dance program that supports co-creative engagement as exploratory, interactive, and embodied. Evaluation of the impact of this program with persons living with dementia [23, 42] captures the playful and imaginative nature of their engagement, which involved immersion in the narrative approach to dance; 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. Participants’ immersion entailed suspension of what is real, adding their own personality to their animation of the dance, and their being accomplices to each other’s movements, collaboratively animating the narrative. As such, the dancers’ engagement in the program in the film powerfully counters assumptions of existential loss with dementia [63–65]. Another way that the program is participatory and supports co-creative engagement is by offering opportunity not only for persons living with dementia, but also for practitioners and family carers to come together as a community through dance, which is crucial for the creation of a truly relational community in LTC [2, 66]. Other research on participatory arts in the context of dementia has similarly found that in contrast to the predominant reduction of the arts to a therapeutic intervention, such programs cultivate opportunities for co-creation and equitable social interaction with people living with dementia [19, 30].

Given how entrenched stigma is, it is significant that a 20-minute film triggered the transformation that it did. Also, given the practical challenges of doing culture change work in dementia care [67], including staff shortages, increasing workloads, and the related insufficiency of time [3, 4], the shorter duration of the film may better support staff participation. The same could be said about the benefits of a shorter duration film for engaging family carers and policy makers who are no less affected by neoliberalism and austerity measures.

Limitations

Effecting structural change is a critical dimension of reducing stigma, and yet, despite including decision-makers as study participants, they did not describe engaging in change at the structural level. This may be attributed to the fact that the time that elapsed between the immediate and follow-up data collection was not sufficient for participants to affect policy reform. However, longitudinal design alone may not be enough to support this kind of change; as Kontos et al. [33] found, not all decision-makers may be in positions to establish and enforce legal, policy, and rights-based structures. Thus, an important direction for future research will be exploration of the impact of Dancer Not Dementia on policy change for stigma reduction with a study design and recruitment strategy to better support this.

While our sample includes multiple stakeholder groups and we found a similar impact of the film across these groups, we did not explore the impact of the film within the groups in relation to intersecting forms of privilege and disadvantage (e.g., based on ability, age, sexual orientation, socio-economic status, race/ethnicity). While we found that some participants from the dance community remarked on the uniqueness of seeing persons living with dementia engage in the art form of ballet, this was not salient in other stakeholder groups. Given emerging research that suggests there is congruence between specific genres of dance programs for persons living with dementia and their history, regional traditions, and customs [68, 69], it will be important to explore whether and how such intersecting identities might influence engagement and impact. Thus, exploring the impact of Dancer Not Dementia with more a diverse sample will be important to determine the generalizability/transferability or our findings.

Social desirability bias may have been another kind of influence on the impact of the film as described by participants; it is possible that some participants answered interview/focus group questions in ways that they believed was expected or preferred despite the strategies we employed to mitigate this. For example, one participant at the time of the study was affiliated with NBS as a dance teacher but not for the Sharing Dance program, and another was a student at NBS in the past; thus their responses might have been influenced by these connections to NBS. However, with the exception of their remarks on the uniqueness of seeing persons living with dementia engage in the art form of ballet, there were no other substantive inconsistencies in their responses with those of dance community participants with no affiliation to NBS and to those of other stakeholder groups. Nonetheless, capturing the perspectives of people who find and watch the film on their own (e.g., tracking viewing and responses via marketing methods rather than in the context of a study exploring the impact of the film) and who have no current or past affiliation with NBS could be yet another way to minimize the possibility that participants feel incentivized to respond to questions in a particular way.

Capturing the perspectives of people who find and watch the film on their own (e.g., tracking viewing and responses via marketing methods rather than in the context of a study exploring the impact of the film) could be yet another way to minimize the possibility that participants feel incentivized to respond to questions in a particular way.

Finally, while the data strongly support the effectiveness of Dancer Not Dementia, it may be that the questions themselves did not evoke specific critiques of the film or prompt participants to reflect on what could have been more impactful with the film given that we did not explicitly ask about this. In future research, it will be important to more explicitly explore the ways in which Dancer Not Dementia, and research-based film more generally, can be strengthened to better foster emancipatory dialogue and action.

Conclusions

Dancer Not Dementia offers an alternative discourse about dementia that is a powerful corrective to the “narrative dispossession of people with dementia” Baldwin cited in [36] that is so commonly perpetuated by disparaging representations of people living with dementia as a homogenous social group that is mindless, insensate, and incapable of meaningful communication. By countering stigma and advancing a more relational representation of people living with dementia, the film contributes to the growing evidence base for the effectiveness of using film to influence public health [32]. Given the reduction of stigma has been identified as central to the global public health response to dementia [70] and that the arts are key to inspiring reforms to policy and practice [53], our film is positioned to inspire the creation of environments in which everyone who is impacted by dementia is supported to grow and to thrive.

Authors’ contributions

All authors provided intellectual contributions to this manuscript and reviewed and approved the final version. Conception and Design: PK, RC, DS, JPV, RA & RB. RC, DS & JPV collected the data. Data Analysis: PK, AG, RC, DS, JPV, RA & RB. PK, AG & RC drafted the manuscript.

Funding

The Public Health Agency of Canada [Grant title: Sharing Dance with People Living with Dementia].

Data availability

Data from this study cannot be made available to other researchers for reasons of protecting the anonymity of the participants and because they did not provide consent for their raw data to be shared publicly.

Declarations

Ethics approval and consent to participate

This study received ethical approval from the Research Ethics Boards of the University Health Network and Baycrest (Clinical Trials Ontario #4167). Informed consent to participate was obtained from all participants who provided their consent either in writing (in-person or by email) or online through a secure REDCap platform.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.