Piece of Mind: Mobilizing Scientific and Experiential Knowledge of Dementia through the Arts

Peer-reviewed publications and conference presentations are considered the gold standard for disseminating scientific advances within the academic sphere but have proven problematic for translating research findings into practice and policy [1,2]. Doing so requires effective knowledge exchange and coproduction with diverse nonacademic stakeholders to ensure that both the research and its potential applications are in line with the needs and specific contexts of knowledge users [3,4]. This is particularly pertinent within the health sciences, which are driven by an overarching goal to improve quality of life; however, the positivist approach of lab-based and clinical research has been criticized for adopting a narrow view of what constitutes knowledge and evidence [5,6]. In particular, while quantitative methods, self-report measures, and clinical outcomes are essential for advancing factual knowledge of disease mechanisms, these fail to capture knowledge regarding the nuanced and complex experience of illness [7].

Numerous knowledge translation (KT) frameworks have been proposed to integrate knowledge users into scientific research and to transfer knowledge to nonacademic stakeholders [8–13]. While each strategy comes with its own affordances, arts-based approaches are particularly recognized for their ability to engage stakeholders in a more direct and equitable manner and to paint a rich, nuanced picture of complex and sensitive research topics [14–17]. In this way, they broaden what is possible through more conventional methods in both the research process and product. Artsbased research encourages a multimodal and collaborative approach to knowledge coproduction between diverse stakeholders, allowing for the integration of tacit, embodied, and conceptual knowledge [18–21]. As an artistic product, research-based creation can emotionally engage audiences to reflect critically on the subject matter [22,23]; allows for novel interpretations of research findings [24]; and can prompt empathy, policy, and healthcare changes [25–32].

Using the arts for a more inclusive, person-centered approach is particularly relevant for Alzheimer’s disease (AD) and dementia research, as social stigma and misunderstanding continue to threaten the well-being of individuals living with these conditions and those who care for them [33,34]. Given that the progression of dementia is often accompanied by a breakdown in verbal communication, interdisciplinary researchers have successfully turned to the performing arts to engage with people with dementia through embodiment and creativity [35–40]. The use of participatory arts in the research process enables a creative space in which people with dementia can “exercise their narrative citizenship by constructing an alternative narrative that challenges the basis for their social devaluation” [41]—a crucial step in disrupting the tragedy discourse still pervasive in health research, practice, and media [42]. To this end, artistic products informed by or cocreated with people with lived experience have shown promise in reducing stigma, changing attitudes, and improving relational care toward people with dementia [43–48]. Building on this work, which has primarily been grounded in research-based drama and focused on care providers, we sought to explore the affordances of other performing arts and to broaden perspectives on dementia within neuroscientific research.

In this article, we describe our use of the performing arts to bridge scientific research and lived experience of dementia by bringing together neuroscientists, artists, people living with dementia, and their caregivers to cocreate the intersectoral, multimedia performance Piece of Mind: Dementia. Using an arts-based, integrated KT approach and placing equal importance on the process and product, our objectives were to: (1) use creative collaboration to create common ground between project participants, with the ultimate goal of facilitating knowledge exchange and empathy between diverse stakeholders; and (2) produce an artistic work that combines knowledge from lived experience and scientific research to challenge stigma and improve public awareness of dementia, with the ultimate goal of creating a versatile KT tool with a range of potential applications (e.g. conferences, artistic events, community engagement, workshops, classrooms).

With the long-term goal of integrating stakeholder perspectives into health research and contributing to a more holistic, person-centered view of dementia, we report on the cocreation process and provide a detailed description of the resulting Piece of Mind: Dementia performance.

We used purposive sampling to recruit neuroscientists studying AD or dementia (n=6), circus performers (n=5), dancers (n=3), musicians (n=4), people with dementia (n=3), and their caregivers (n=3). Ethics approval was obtained from the McGill University Institutional Review Board (A12-B74-20B). Between October 2020 and June 2021, we conducted several iterations of participatory research and artistic creation to identify the key messages that participants wished to convey to audiences and how the performing arts could be used to do so. We followed recommendations from Canadian Institutes of Health Research guides for integrated knowledge translation [49] and knowledge user engagement [50] to balance the emergent process such that all participants could contribute ideas within a guiding framework for the larger project objectives.

Neuroscientists and artists first participated in a virtual art-science workshop, where they were partnered to use artistic media to communicate a dementia or AD research topic. This allowed them to gain firsthand experience with art-science collaboration, and the resulting short videos were used to introduce neuroscientific concepts to the participants with dementia and their caregivers [51]. All project participants then took part in six biweekly 1–1.5-hour Zoom sessions (given COVID-19 pandemic restrictions), in which dance, music, and other creative activities were used to facilitate relationship-building and communication regarding scientific research and lived experience of dementia. Each meeting ended with 30 minutes of discussion where participants were invited to ask questions, share feedback, and brainstorm ideas for the performance. To gain further insight into their lived experience and guide the creative process, participants completed informal surveys on their own time.

Based on the discussions over Zoom and the informal surveys, Naila Kuhlmann (NK below) identified the following emergent themes:

1. Things lost, things gained: acknowledging the loss and grief that come with dementia (e.g. affecting memory, communication, and daily activities) but recognizing and celebrating new discoveries that may emerge (e.g. aspects of identity, appreciation for the present moment, relationships with loved ones).

2. Shifting relationships: how the progression of dementia continually affects and changes how one relates to family members (e.g. spouses, children) and friends.

3. Community support and addressing stigma: the crucial role of community support, empathy, and compassion for people living with dementia.

4. Resilience and adaptation: understanding that dementia is not a death sentence—there are ways to live well with dementia.

NK presented the themes to the group; the themes were further developed through small group discussions and collaborations to inform the music, choreography, narrative, and general aesthetic for the performance.

The information and creative content resulting from the virtual group sessions were synthesized over a one-month artistic residency with the performers and production team. Other participants were consulted weekly to ensure that the artistic material produced remained true to its source information.

The performance was created with a wide and varied audience in mind, focusing primarily on raising awareness and addressing stigma around dementia, but with the secondary aim of piquing curiosity regarding our current scientific understanding of AD and the points of intersection between research and lived experience. While the themes pertaining to the lived experience of dementia took precedence in the performance’s narrative, scientific concepts—particularly pertaining to the neurobiological underpinnings and modifiable risk factors of AD—were represented specifically within certain scenes and integrated throughout. Piece of Mind: Dementia was filmed, edited, and disseminated on YouTube [52], with subtitles in both English and French. Audio clips from Zoom sessions were integrated throughout to share participants’ experiences in their own words. Supplementary materials accompany the performance for further context, including written scene descriptions, artists’ statements, making-of footage, and interviews with project participants.

The resulting 50-minute multidisciplinary Piece of Mind: Dementia performance consists of ten vignettes seamlessly woven into a narrative, immersing the viewer into scenarios from lived experience and providing insights into AD research (Table 1). The following scenes were designed to emotionally engage viewers and pique curiosity about the research underlying the performance.

The performance begins with a high-energy musical number—a vibrant souvenir of past festivities. Inspired by stories from project participants, this scene is a celebration of “the good old days,” being “dressed to the nines,” and enjoying life to the fullest. The musical number closes with a shower of confetti and a flashy group pose. As the performers begin cheerfully cleaning up, one of them, Adrien Malette-Chénier, is frozen in place. He wanders slowly and confusedly through the scene and is met with impatience and misunderstanding—representing the initial response that even close friends or family may have to dementia. As the scene becomes increasingly unsettling, Malette-Chénier’s partner, Agathe Bisserier, gently takes his arm to capture his attention.

This hand-to-hand acrobatic act represents the shifting dynamics that may occur between a caregiver and person living with dementia (Fig. 1). The choreography repeats a series of impressive lifts, each time shifting the balance between who is “supporting” and who is “flying.” At first, Malette-Chénier effortlessly sweeps Bisserier off the ground, dancing around the room with her posing in the air. When the sequence repeats, Malette-Chénier is more hesitant and increasingly relies on Bisserier to guide his movement. The roles progressively reverse, concluding in Bisserier fully supporting Malette-Chénier while he “flies.” Despite Bisserier’s visible struggle, their duet is marked by tenderness and concludes in a loving embrace.

The music in this scene is a sweet sung melody accompanied by piano and violin. The melody symbolizes memory; in the spirit of a lullaby, it is as if reminiscing on a song from childhood. This is repeated and transformed by the piano or violin or through voice, paralleling the acrobats’ transformation on stage.

This absurd take on the Mini Mental State Examination (MMSE) [53] reimagines the widely used test of AD as a game show. The contestant, Heidi Blais, confidently answers the first couple of questions but is caught off guard by a third, incongruous question. As Blais’s confusion increases, the other contestants knock her off balance by suspending her in the air as the game show host interrogates them instead of asking how she is doing—acknowledging the frustration participants expressed when healthcare professionals automatically direct questions to the caregiver instead of to them. Blais is subsequently turned on her head, precipitating a balancing act that represents the concept of cognitive reserve. The MMSE questioning accelerates, mixing in references to activities that may slow dementia progression. The frantic interrogation also illustrates the pressure some caregivers expressed to continuously keep their partners cognitively engaged. The absurdity of the scene is augmented by background clashing cymbals and electronic sounds, created by sonifying an electrophysiological recording of neuronal activity.

This scene was inspired by the neuronal changes that occur in AD and was built on an art-science video illustrating some underlying molecular mechanisms. The scene features Claire Honda, whose tap dance evokes neurons firing and triggers the accompanying music. Honda’s tap dance degenerates throughout the scene, causing the music to do the same. This degeneration is mirrored in the dance phrase that the four other performers repeat throughout: They begin in synchrony and each disintegrates the phrase in a progressive and random manner. To further integrate scientific context, a microscopic image of neurons is projected onto the dancers and audio clips are sampled from the podcast AMiNDR: A Month in Neurodegenerative Disease Research [54]. The scene also evokes one of the central messages of the performance: The dancers persevere despite increasing difficulty and add their personal touch in the face of change.

A final audio clip from AMiNDR, on the connection between frailty and dementia risk, leads into a Cyr wheel act (Fig. 2). The acrobat, Jérémie Robert, illustrates frailty by focusing on grip strength, discovering ways to move and perform with the wheel without using fingers. As the scene evolves, Robert’s movements become increasingly strenuous and powerful, representing how physical activity may foster resilience and reduce the impact of AD. This scene also evokes an initial response to, and eventual acceptance of, a diagnosis.

The accompanying music repeats a delicate melody inspired by the Cyr wheel and the perseverance required to overcome frailty. The music builds to a crescendo with an acceleration of the tempo to match Robert’s progression, and layers in a recording of birdsong to evoke walking outdoors—an activity project participants noted as important to their quality of life.

This handstand act symbolizes community support, as Annefay Audet-Johnston, the acrobat, anchors herself in the names of loved ones. She gains confidence each time she recites a name, as reflected in the quality of her movement and stability, and is physically supported by other performers throughout. This abstract scene was created around a musical composition, “… sounds like static … ,” based on a Piece of Mind musician’s experience of her grandmother continuously reciting family members’ names. The music was cocreated by project participants recording their cherished names and reflecting on how loved ones can call us back to the path when we lose our way.

This scene is based on an anecdote about giving a family member with dementia a gift, which is subsequently forgotten and joyfully rediscovered. Variations of this vignette reappear throughout the entire performance, progressing from an initial confused reaction from the other performers as Greg Selinger rediscovers his gift to one in which they, in the words of a Piece of Mind caregiver, “just go with it.” The song heard in the background, “That’s Amore,” was recorded over Zoom with some of our participants, accompanied by a discussion of the joyful memories evoked by the song and how dementia has affected their family.

“Entangled” explores some heavier aspects of how dementia impacts family while alluding to the pathological hallmarks of AD (Fig. 3). The focus is on Selinger and Laurie Archambault, who are slowly entangled and separated by a long silk fabric. This represents the loss of communication and isolation that can occur with dementia, the “folding in on oneself,” and the many ways in which family members are wrapped up in this experience. The scene simultaneously emphasizes the importance of family ties and social bonds, the patience and understanding toward someone living with dementia, and new beauty that may emerge. This is reflected in testimonials from family members describing how they are coping with dementia, layered over a somber but serene cello and piano duet inspired by a dyad participating in Piece of Mind. As the scene closes, hand-drawn mandalas are projected onto the fabric—inspired by a project participant mentioning her mother’s newfound love for coloring mandalas since she has developed dementia and a reminder to stay in the present moment.

This scene is based on the analogy that memories are like a stack of papers: When a disruptive wind comes in, the most recent ones (e.g. the top of the pile) are lost first, while older memories are retained. Robert shares a memory from his childhood. As he nears the end of his story, he hesitates as a few papers blow past. He launches into another story, but this is drowned out by recorded stories from project participants, extracts from the AMiNDR podcast, and snippets of audio from earlier in the show. The other performers advance toward Robert with loud fans and stacks of paper, causing the papers to swirl around him as he tries to grab them from the air (Fig. 4). This tableau conveys the exasperation experienced when one can no longer hold on to a memory.

The final scene represents the calm after the storm: a resolve reflecting acceptance and adaptation. As the papers settle, the performers pick them up to organize and exchange them, representing the idea that memories are shared and cherished between people. They recount their stories of creating the performance, grounding the viewers in the present and in the joint memories formed throughout the project. Inspired by project participants’ tendency to start partner-dancing when a familiar song was played in the Zoom sessions, the performers dance together to “What a Wonderful World,” while others pin pictures from the show on the back wall. Echoed in compassionate and hopeful testimonials from project participants, the closing image is one of embracing change together.

Overall, the performance shines light on the challenges that accompany dementia, highlights scientific advances in understanding AD, and celebrates compassion and resilience. By using multiple artistic media to convey the emotional dimensions of dementia and to represent elements of AD research, Piece of Mind encourages viewers to reconsider their preconceptions and to seek further information about this disease. Our creative participatory process allowed us to explore how art-based methods can foster empathy and increase knowledge exchange between neuroscientific researchers and people living with dementia. By engaging with people with lived experience both in outlining the project objectives and in the cocreation, the resulting performance has the necessary credibility and validity to challenge attitudes toward dementia and can be adapted to a variety of audiences and contexts to serve as a significant complement to scientific research dissemination.

While arts-based approaches may lend themselves more naturally to subjective and lived experiences [55–57], our work contributes to a growing art-science movement in additionally exploring how to make neuroscientific research more engaging for general audiences [58]. As a complement to traditional modes of disseminating scientific findings, the arts provide an aesthetic lens through which viewers can grasp a bigger picture by putting research into context. In particular, the arts lend themselves to emotional engagement [59,60] and immersion, with the use of metaphor and imagery allowing for a more complex and evocative representation than is possible in a scientific text [61,62]. Indeed, Kate Rossiter et al. [63] note that this multifaceted depiction—often entailing a departure from facts—can foster a sense of “emotional truth” in audiences; this enables viewers to feel transported into the scene and subsequently to think differently about the information contained within [64,65]. This abstraction of data is one of the key strengths of arts-based KT, allowing for new interpretations as research comes into dialogue with audiences and facilitating experiential and transformative forms of learning [66–69]. However, this same abstraction limits the use of artsbased KT approaches, as they are less appropriate for transferring fact-based knowledge. Recognizing this, we consider our performance a disruption of preconceived notions around dementia, as well as an invitation to learn more, and provide supplementary information for the viewer to explore the presented information in greater detail [70].

Both the participatory process and resulting performance have opened up promising avenues for research and creation. We are currently investigating the impact of the cocreative process on project participants using a qualitative approach and are administering pre- and post-performance questionnaires to spectators to evaluate the performance’s ability to change attitudes and challenge misperceptions of dementia, foster empathy toward people living with it, and spark curiosity regarding the scientific research. Given the versatility of a filmed performance, we are exploring how it may be adapted to different settings; this includes screening it for specific audiences (e.g. people with lived experience, neuroscience graduate students studying dementia and AD, clinicians, high school students, circus artists) for more targeted discussion and showing select scenes in an interactive workshop format. Using the film as an invitation to enter into direct dialogue with audiences allows us to consider other interpretations and potential applications for the work and how it may best serve as a complementary tool to other forms of KT, community engagement, and research dissemination around dementia. We hope that the process and product of Piece of Mind contribute to a shift away from the tragedy discourse of dementia and encourage researchers, clinicians, and the general public to consider a more nuanced, compassionate, and empowering discourse.

The authors would like to acknowledge the significant contributions of the Piece of Mind participants; the Piece of Mind: Dementia performance would not have been possible without the enthusiasm and talent of all involved. We would like to thank Anusha Kamesh for reviewing our manuscript. The research received financial support from Healthy Brains, Healthy Lives; Canada First Research Excellence Fund; and the Canadian Institutes of Health Research. The creation and production of the performance were funded by Conseil des arts et des lettres du Québec, Conseil des arts de Montréal, and Étude partenariale sur la médiation de la musique.