Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation

Abstract

Parkinson’s disease and dementia are highly stigmatized, creating social exclusion and inequality by depriving persons living with these conditions of their human rights and threatening their health, well-being, and quality of life. Challenging the stigma associated with these conditions is a key public health priority across national and international settings, and arts-based approaches are advocated to achieve this. We are researchers who use artistic and creative media including documentary films, research-based theatre, dance, circus and graphic narrative to challenge dominant and oppressive cultural and social norms, and to imagine and affect inclusive, compassionate, and socially-just approaches to supporting people to live well with neurodegenerative conditions like dementia and Parkinson’s. This includes fostering opportunities for co-creative engagement with people living with these conditions, to promote their inclusion as co-creators rather than subjects in research initiatives. In this conversation-style article, we draw on our qualitative research and experiential knowledge to reflect on the challenges and opportunities regarding arts-based research with people living with Parkinson’s disease or dementia. We share examples from our own work, across a range of artistic approaches, to illustrate the transformative potential of the arts to affect social change and to bring to light the tensions that arise in co-creative processes. Through this conversation, we hope to inspire and equip others to draw on the power and complexities of arts-based approaches for the co-production of knowledge to transform societal representation of neurological conditions and to foster human flourishing.

Plain English summary

Stigma associated with Parkinson’s disease and dementia leads to social exclusion and health inequalities, threatening the well-being of individuals living with these conditions. This stigma stems from an assumption that these conditions impede the ability to build and maintain relationships, and therefore to participate meaningfully in society. The arts support human flourishing by opening avenues for self-expression, creativity and relationship-building, and provide an opportunity for persons living with these conditions to be directly engaged in research initiatives as the experts of their own experience. We are researchers who use artistic and creative media to challenge negative representations and misperceptions of Parkinson’s disease and dementia through the arts, and to involve persons living with these conditions as co-creators in our research. In this conversation piece, we share examples of our work in documentary film, theatre, dance, circus and graphic novels to illustrate the transformative power of art for social change, and to discuss the challenges and opportunities that arise along the way—with the hope that it may inspire others to explore the intersection of the arts and neurodegenerative conditions.

Introduction

Dementia and Parkinson’s disease are the two most common neurodegenerative disorders: both are highly stigmatized. Stigma associated with these conditions can result in public health inequality by creating social exclusion and marginalization, diminishing dignity, and threatening well-being and quality of life [1,2,3]. Stigma is based on assumptions that the progression of these conditions strip the person of their agency, leaving them unable to engage in purposeful and meaningful communication, pursue life-enhancing relationships and activities, and to experience joy and vitality [3, 4]. Much of the focus of research and media representations of dementia is violence and aggression, extreme dependency on heroic carers, catastrophic prognosis, and loss and decline [5]. Cultural representations of Parkinsonian conditions are also stigmatizing in that they tend to be stereotypically portrayed through an exaggerated focus on disabling physical traits, such as tremors, freezing of gait, and impaired speech [3].

Contributing to the stigma associated with these conditions is the biomedicalisation and the pharmaceuticalisation of neuropsychiatric symptoms [6], despite that antipsychotic medication has been linked with serious adverse drug reactions, increased mortality, and impaired quality of life [7,8,9]. Within the ‘acute cure’ model of biomedicine, the person is reduced to his/her neurological impairment. Care is often reduced to basic physical tasks such as eating, toileting and feeding and very limited opportunities are provided to pursue life-enhancing relationships and activities, to grow, and to participate in social life [10,11,12]. Another consequence of this stigma is that people living with these conditions are rarely involved in research, and when they are, their participation is most often limited to being a study participant rather than a co-creator. This is despite calls for greater participation of older adults in research and in the co-design of services and products intended for their use [13, 14]. Their exclusion from these more meaningful roles within research reproduces stigma associated with these neurodegenerative conditions rather than challenging harmful assumptions and practices. Challenging the public stigma associated with dementia and Parkinson’s is a key public health priority across national and international settings, and a crucial step to ensuring that persons living with these conditions have equal access to participate and stay socially engaged in their communities [15,16,17]. Given how embedded stigma is in the public consciousness (e.g. across popular media, policy, and lay beliefs) [18] arts-based approaches to achieve this are advocated for their interactive, educational, and emancipatory potential. This is consistent with the growing body of literature that demonstrates the effectiveness of the arts for triggering individual and social transformation [19,20,21]. We are researchers who use documentary films and other creative medias such as research-based theatre, dance, circus and graphic narrative to challenge dominant and oppressive cultural and social norms, and to imagine and affect inclusive, compassionate, and socially-just approaches to supporting people to live well with neurodegenerative conditions like dementia and Parkinson’s. Supporting opportunities for co-creative engagement in research by people living with these conditions is another way that we challenge stigma and help to foster human flourishing [4, 12, 22, 23]. Naila Kuhlmann promotes connection, communication and collaboration across embodied differences using the performing arts. In the arts-based knowledge translation project Piece of Mind, she brought together people with Parkinson’s disease and/or dementia, care partners, neuroscientists, and artists to co-create two performances that integrate perspectives from scientific research and lived experience. Pia Kontos draws on documentary film and research-based theatre to challenge the stigma associated with dementia, expose inhumane and harmful policies and practices for people living with dementia, and promote more compassionate and inclusive approaches to dementia care. Prominent examples include Cracked: new light on dementia [4, 24] and Dancer Not Dementia [25]. Maria Christensen-Strynø explores bodily and experience-based visual and aesthetic forms of expression, with particular attention to disabled embodiment in contemporary art, media, and popular culture. In the Danish-based participatory research project Dancing with Parkinson’s (2019–2022), she co-created knowledge about dance in the everyday lives of people living with Parkinson’s using arts-based methods, and co-produced the graphic novel Moving along [26], with the purpose of creating accessible, collectively engaging and aesthetically pleasing research dissemination. Stefanie Blain-Moraes develops technology to support music- and dance-based programs that enhance the quality of relationship between persons living with dementia and Parkinson’s disease and their care providers.

The synergy between our research philosophies and arts-based approaches, yet differences in our choice of media and specific aims, fueled a rich panel discussion on the intersection between social justice arts, participatory research and neurological conditions at the 2024 International Neuroethics Society meeting. In this article, we revisited our initial conversation by returning to the following three topics explored as part of the panel discussion pertaining to the role of the arts in public involvement and engagement in research on neurodegenerative conditions: (1) the impact of art for social change; (2) the transformative potential of the arts for audience members and for people living with these conditions who participate in co-creative development of arts-based research; and (3) challenges and tensions around representation. We met several times subsequent to the panel discussion and it was through conversation that we deepened our reflections and elaborated on our thoughts and experiences. We thus deliberately chose to maintain a conversational style for this paper as it best captures the throughlines between our respective works, while anchoring each of our perspectives in concrete examples drawn from our diverse experiences in participatory research and co-creation. As moderator of the original conversation, Stefanie Blain-Moraes provides a commentary of each topic throughout.

Question 1. Central to your programs is the arts as a trigger for social change, and your use of the arts to change narratives and conversations. What is the impact of this kind of work?

Naila: Capturing—let alone measuring—the social impact of something like an artistic performance is an ongoing struggle in arts-based research and knowledge translation [27]. In Piece of Mind, my approach was a qualitative study of both the participants’ experience in the co-creative process and the audience’s responses to the resulting performances. Drawing on these findings and my experiential knowledge, I’ll speak to the impact first on the level of participants, and then on the level of audiences.

By interviewing diverse participants from Piece of Mind: Parkinson’s, I found that an embodied and arts-based approach established a very different dynamic than if we had entered into conversation right away, assuming our usual roles or stances towards one another. Each session began with a creative group exercise using music and improvised movements, with a focus on building connection and on introducing scientific topics through direct bodily engagement. This allowed us to meet and get to know one another without words, on an equal playing field. Suprisingly, this was facilitated by using the virtual platform Zoom, on which we all appeared as little squares on the same screen. One participant reflected in an interview, “I remember joining one of the Parkinson’s Zooms for the first time and having no idea who was who in terms of what their roles were and so, it’s true. Everybody was just a human participating.” [28]. While several participants noted feeling out of their comfort zone and questioning their place at first, the blurring of roles facilitated a sense of togetherness and working towards a joint vision in which everyone had something to contribute.

The reception to the performances was captured through online questionnaires with researchers/clinicians, people with lived experience, performing artists and a general public who had viewed filmed versions online [23]. The emotional engagement has been overwhelmingly positive—keeping in mind that I’m receiving responses primarily from audience members with whom the performances resonated, and not from those who disengaged from them. Viewers came away with a deeper appreciation of what it may be like to live with these conditions, recgonizing that dementia is more than memory loss and that Parkinson’s extends beyond the visible symptoms. Some shared concrete examples of how the performances changed their sensitivity towards or awareness of people living with Parkinson’s and dementia. For example, several audience members from Piece of Mind: Dementia noted they would strive to be more patient and focused on the present moment when interacting with persons with dementia, and a dance scene on the tensions of asking for, giving and refusing help in Piece of Mind: Parkinson’s sparked several reflections on how to approach offering help in various scenarios. When sharing the work at conferences and with academic audiences, I’ve been struck by the stir in the room afterwards, as it moves people to engage with a topic they may be very familiar with from a novel perspective.

Maria: One of the most impactful changes we observed was in relation to the participants’ self-perceptions: they were able to explore their identities in relation to Parkinson’s disease in ways that didn’t favor a negative focus on illness, but instead encouraged creativity and artistic imagination. For instance, several participants emphasized how dance activities felt profoundly different from other forms of therapy or exercise, describing them as a source of joy and creativity rather than something purely clinical. Especially, they contrasted the rigid structure of physiotherapy with the freedom of movement and artistic expression in dance, noting that while both involved physical activity, dance also unlocked a sense of happiness and vitality [12]. This sentiment reflected a broader desire among participants to have more opportunities to engage in such empowering practices.

Additionally, I think that being involved in the research project allowed them to reflect even more on their personal narratives and see themselves not just as patients, but as creators and contributors. The communal nature of the dance sessions and the co-creation process was also transformative, as many described how sharing their experiences and being together fostered a strong sense of belonging. The connections formed within the group of participating co-researchers helped create a supportive environment where they could embrace their creativity, vulnerability, and resilience together. Many spoke about how being a co-researcher and co-creator in the project gave them a sense of renewed purpose and pride in their abilities, which extended beyond the dance floor and into other areas of their lives [29].

As our project was built on dialogic principles of co-creation, it is important to highlight that we specifically invited people to participate as dancers and co-researchers, not as Parkinson’s patients [30, 31]. I think this was crucial for fostering a new sense of agency that many of the participants were not used to being granted—at least not in relation to dealing with Parkinson’s as part of their lives [32]. Over the course of the three years that our project ran for, it became increasingly clear that allowing participants to be the expert of their own life had a major positive impact on their self-perceptions of living with Parkinson’s.

Pia: I’ve done a lot of evaluation research with colleagues on different arts-based initiatives, including research-based theater, filmed research-based theater and documentary film. Notable examples include Cracked: New light on dementia [24, 33] and Dancer Not Dementia (Kontos, et al., Under Review). We’ve explored their impact using qualitative research methods with family carers, health care practitioners and other staff, and the general public, and in the case of Dancer Not Dementia, we additionally engaged people living with dementia, policy makers, and members of the dance community regarding impact. In care settings, we have found that these initiatives have been extremely effective in reducing stigma, by changing knowledge and attitudes regarding dementia and by changing ways of relating to people living with dementia. There have been significant shifts from a tragedy perspective on dementia to a more life-affirming one; one that looks beyond cognitive memory to see people living with dementia as vital and complex beings, and to recognize the possibilities of living well with dementia. Amongst healthcare practitioners, this has included a shift from task-oriented behaviour to really valuing compassion and meaningful connections; for example, giving more attention to how the person living with dementia is feeling, and using humour and finding joy rather than correcting them. In our longitudinal evaluations, similarly using qualitative research methods, we’ve found that just one engagement with Cracked was sufficient to sustain these changes over an eight-month period [24]. These initiatives have therefore not only been successful in promoting understanding but also in triggering changes in terms of relating to people living with dementia, which is significant given how entrenched the assumption is that dementia results in existential loss. I think this speaks to the transformative power of the arts.

Stefanie: The panelists’ answers to this question demonstrate how using art for social change can impact both the audience and the creators. Naila and Maria provide powerful examples of how the process of co-creation with researchers, artists and persons living with neurodegenerative conditions can transform the participants. Naila and Pia also speak about the enduring impact on audience members who engage with the art in terms of changes in their attitudes and approaches towards neurodegenerative conditions. The panelists’ answers also highlight the need to critically rethink how we measure the impact of art in healthcare settings. Their artistic creations deeply affected the sensitivity, attitudes, agency, perspectives and approaches of those living with neurodegenerative conditions and those caring for and with them. Although these changes fundamentally alter the quality of relationships and quality of life of people with Parkinson’s disease and dementia, they are not captured in the quantitative measures that are traditionally used to assess the effect of interventions and treatments in these populations. Despite that qualitative methods are often regarded as inferior (i.e., ranking lower on the evidence hierarchy than quantitative methods [34]), the kinds of benefits of the arts that are described here are significant and would not have been captured using quantitative outcome measures. Emerging methods from fields like neurophenomenology can enable us to rigorously capture impact not only in terms of perceptions and knowledge gained, but also in terms of real-world, immediate changes in patterns of relating, and more sustained changes over time [35] and across diverse stakeholder groups (policy-makers, general public, family and professional carers). Such methods should be seriously considered by both researchers and policy-makers alike as powerful vehicles to capture a rich and nuanced description of the trajectory of attitudinal and relational factors to expose the profound impact that the arts can have in these neurodegenerative populations.

Question 2: Affecting these kinds of changes is not easy. Why do you feel the arts have such transformative power?

Pia: The changes we’ve observed in our research stem from the aesthetic qualities of arts-based knowledge mobilization. Being immersed through multiple senses allows people to see differently, which in turn creates the potential for them to then act differently. For example, in our research on the impact of Cracked: new light on dementia [4, 24], we found that the perceived realism of the characters and the storylines were essential to participants’ deep engagement with the production. This realistic relatability was expressed by participants in terms of their identification with what was being performed. Participants have also described how their engagement with music and humor in the production brought levity, surprise, and de-familiarization, which supported a shift in their perspective and their envisioning of hopefulness for people living with dementia.

There are also several visual aspects that audience members described as key to facilitating their engagement and understanding the key messages. This is particularly apparent in our “address scenes”, in which one of the characters living with dementia moves to the front stage, separating themselves from others on the stage to directly address the audience with a monologue about their experience. These scenes are described as providing insights about the experiences of living with dementia and highlighting capacities that people living with dementia are not presumed to have. Similarly, many viewers of the documentary film Dancer Not Dementia reflected on the power of seeing the dancers engage in dance and also in hearing directly from the dancers themselves about their dance experiences (Kontos, et al., Under Review). These examples underscore the importance of aesthetic interpretation and engagement for fostering social change.

Maria: The beauty of working with creative and artistic expression is that it allows people to connect in ways that can be very concrete, such as writing a haiku poem with specific linguistic criteria or performing a specific set of dance moves [4]. At the same time, art is also so delightfully abstract and triggers imagination, enabling us to envision how we want things to be or feel different from the way they are or feel in the present. This combination of being very concretely expressive while also cultivating our imagination makes art transformative in ways that are accessible on several levels to many people, and can connect us across differences and different experiences.

Moments that stand out occurred during ethnographic interviews in participants’ homes. One specific example was a conversation with a co-researcher, in which she reflected on a reproduction of a painting on her wall in her own home, describing the painting’s interplay of colors and forms as representing the course of life: death, joy, love, and interaction – all swirling together. She likened this to being inside a kaleidoscope, where shifting one’s perspective could reveal entirely new patterns. This associative reflection not only revealed her relationship to the painting but also underscored her mindset of resilience and imagination – of moving through sadness by shifting perspective, much like turning the tube of a kaleidoscope to see a new configuration of shapes [22]. Her ideas resonated deeply with our project, and the kaleidoscope became a symbol of the reflexivity and iterative nature of the storytelling workshops, where participants’ own metaphors, sensations, and reflections on dancing were mirrored, refracted, and incorporated into the graphic novel’s storytelling universe as a result of working with arts-based and iterative processes [26]. Many of the dancers also had lifelong memories of dancing, which they shared in poetic terms that connected them to their former sense of selves from life before Parkinson’s. I think this speaks to how the arts can help transform feelings of loss to feelings of hope and consolation by offering comfort and connection in ways that were both imaginative and deeply resonant for an audience with and without Parkinson’s.

Naila:The arts enable us to restore some of the multisensory nature and the complexity of the phenomena that we’re studying—and which is often stripped away by our research questions. I am particularly interested in the use of metaphor, and how passing through different media and superimposing multiple modalities allows us to build on a metaphor, which in turn acts as scaffolding to come to a shared understanding and to co-construct new meanings.

In Piece of Mind: Parkinson’s, one of the participants shared her poem “Sur le fil”, in which she describes her experience being like that of a tightrope walker: she is learning a new way of walking through life with Parkinson’s disease. In the process of composing music to accompany her text, her response to each proposition provided a more nuanced understanding of her experience and allowed us to narrow down which musical choices best resonated with her reality. Bringing the musical piece to life on stage required a similar process of trial and error to arrive at something that felt true to her experience. Each time we passed through a different modality the picture came into focus more; in this way, a joint aesthetic inquiry shaped a shared and new understanding of her experience.

Stefanie: All three panelists have highlighted the role of aesthetics in art’s transformative potential. Both Maria and Naila discussed the bridging and communicative power of a metaphor that allows someone to imagine themselves into another’s reality: a tight rope, a kaleidescope, for example. Such metaphors can create a conduit to one’s concrete lived reality by providing an imaginative, abstracted representation that is accessible by others. Pia’ response traces participants’ deep engagement, learning, and shifts in perspective to the aesthetic qualities of arts-based knowledge mobilization. This discussion about what makes art so transformative reminds me of Tobin Siebers’ book Disability Aesthetics, in which he defines aesthetics as “the science of discerning how some bodies make other bodies feel” (p.10 [36]). Siebers argues that aesthetic feelings of pleasure and disgust are difficult to separate from political feelings of acceptance and rejection (Siebers, p. 60), and that discrimination based on identity often comes in the form of an aesthetic judgment. As curated aesthetic experiences, the arts directly confront and shape the affective relations between human bodies. Thus, they are uniquely suited to changing how we feel and how our bodies react towards illness and disability. The responses of the panelists illustrate how leveraging aesthetics to shape the attitudes, beliefs and values of those who interact with people living with Parkinson’s and dementia can profoundly affect the lived experience of disability.

Question 3. As academics using the arts as vehicles for knowledge mobilization, you are bound by your data and responsible for its representation through your respective media. How do you make decisions around representation, and what effect does this have on your audience?

Pia: I can best address this with an example from the development of Cracked: new light on dementia where a tension arose in one of our theatrical devising sessions with the actors and the playwright. The improvised scene we were workshopping took its inspiration from an article by cultural gerontologist Julia Twigg who critiques the clothing regimes in long-term care homes that standardize modes of dress with polyester and other easy-wash fabrics that afford little in the way of style and tactile pleasure [37]. This practice restricts residents’ expressivity and agency, particularly with regards to choosing more finer articles of clothing, fabrics and other treasured personal items. The actors’ improvisation involved a person who, upon entering a long-term care facility, is approached by a staff member who takes away her purse, her coat and other personal items as part of the process. The other residents then shuffle in and form a lineup, which the new person joins, and the staff member spray washes them with sound effects and robotic movements.

This created a lot of discomfort, with some of the researchers really taking offense. It became clear in discussion that what made the scene offensive was that it went too far in depicting the dehumanization of care, and thereby reproducing the tragedy narrative of dementia without any critique of it. Ultimately, we were able to find a more creative way to include a critique of the standardization of dress in the production, but in a way that was much less likely to offend audiences while still invoking some discomfort and concern. The scene became further developed into one of a character living with dementia who is assisted with putting on oversized and shapeless grey sweatpants over more tailored pants, to symbolize her admittance to a long-term care home and the restriction of expressivity, agency and choice that this commonly entails. I share this example to illustrate how complex representation is, and the care with which we need to make decisions about what to include when tensions arise—and that it is in their resolution that the creative piece becomes stronger.

Maria: Our choice of working with graphic narrative as a format for representation was based on addressing issues around making our research dissemination widely accessible—not only for other researchers but also for health practitioners and professionals, and of course the Parkinson’s community. Graphic narrative serves as a bridge that can help create other representations and stories that are more geared towards generating personal engagement and empathy in ways a peer-reviewed article simply cannot.

Beyond accessibility, we were also committed to letting the storytelling creatively and authentically represent the lived experiences of the co-researchers. One way we attempted to achieve this was by weaving the co-researchers’ actual metaphors and stories into the dialogue and storytelling universe. For example, one co-researcher described their experience of dancing as “feeling bubbly like champagne,” while another spoke about the sensation of having “wings and flying – like starlings flocking.” These poetic and evocative descriptions and imageries were directly incorporated into the graphic novel, creating scenes where the characters experienced joy and freedom through movement, echoing the words of co-researchers. By grounding the fictionalized elements in real-life expressions, we sought to capture the emotional truths of the co-researchers’ experiences by “letting [their] stories breathe,” to use the words of sociologist Arthur Frank [38].

At the same time, we wanted to engage with a format that could represent a large group of people in an ethical way, in terms of being able to fictionalize specific experiences and events by working with composite characters and storytelling. While specific moments and stories inspired the narrative, the composite approach allowed us to fictionalize events in a way that respected individual privacy and avoided any singular person feeling overexposed. Negotiating this balance required constant attention to how participants expressed ownership of their stories while also being conscious of inherent power dynamics between researchers and co-researchers. And I think one of the main critical issues that we grappled with, and which will always be the case when we work with co-creation and participatory research on this scale, is that it’s very demanding to make space and take time to seriously consider and accommodate the many different voices involved. Even though the co-researchers played integral roles in the project’s steering group, advisory board, and as co-authors and co-editors of the graphic novel, some hierarchies still remained in play. So it was also important to continuously ask ourselves and each other those difficult questions: How do we grant people equal ownership of a project? How do you negotiate inherent power relations and hierarchies between researchers and co-researchers and other people who have stakes in the project? While I don’t think these questions can necessarily be resolved, the tensions they reflect are some that we must constantly attend to with care and respect, particularly when working with people’s life stories as the research data. The balance between faithfully capturing participants’ realities and creating a cohesive and meaningful story for an audience required constant negotiation. But I believe that this process showed us the potential of graphic narrative to translate and represent deeply personal and complex life stories into art that resonates widely while remaining rooted in participants’ own voices.

Naila: In Piece of Mind, one of the key struggles was striking the balance between literal and abstract—both in representing the scientific information and the lived experience. Recognizing that ambiguity is a crucial element of how the arts engage the audience’s imagination and allow for new connections to emerge, we noted a more negative response to scenes in which the performances became too literal or didactic. However, given that we had specific knowledge and messages we aimed to communicate in the performances, we did not want to leave too much open to interpretation, as this could create confusion or miscommunication.

This additionally raises the question of whether it is appropriate to have young professional dancers and circus acrobats representing experiences of Parkinson’s disease or dementia. The artistic expertise, precision and subtleties provided by highly trained circus artists and dancers were necessary to ensure performances that would communicate the message faithfully to the audience. However, as these artists had not lived a neurodegenerative condition themselves, we needed to be extremely vigilant that we didn’t enter into imitation or caricature. We found that metaphor and abstraction were instrumental to a respectful representation of experiences that many of the performers had not lived themselves. For example, in one scene in Piece of Mind: Parkinson’s [39], a circus artist is suspended by the hair to illustrate a range of complex reactions to receiving a diagnosis, including the upheaval it may cause in one’s life, and yet also a sense of relief in finally having an answer. In another scene, Anne, who lives with Parkinson’s, presents a comedic take on a day in her life by creating little scenarios that put the other performers in her shoes. In Piece of Mind: Dementia [40], a particularly powerful tableau had performers reaching for one another while being wrapped in a long silk sheet, illustrating how the experience of dementia extends past the individual and is shaped by community ties. In both performances, audio recordings from project participants with lived experience provide anchors for the more abstract portrayals.

Another challenge in representation is accounting for contextual or cultural differences in interpretation. This was present within the co-creative process itself, as we were working in a bilingual (French / English) context in which certain expressions and analogies simply don’t translate. We faced this challenge in translating the poem Sur le fil into English for a performance in Atlanta, Georgia. While it meant shifting away from the tightrope walker metaphor, the author ultimately decided that the English expression “On the brink” better captured the essence of her poem. Although this choice likely did not result in a major shift in interpretation, it highlights the importance of considering who the audience is, and facilitating a direct dialogue about the artistic work—whether that takes the form of a post-performance discussion, a forum or comment board, or an interactive workshop. Receiving the immediate reactions of audience members may reveal unintended interpretations or novel insights, which can then be considered in subsequent presentations and inform future iterations of the work.

Stefanie: The examples provided above by the panelists powerfully illustrate the tensions that arise when making choices about representation while honoring authenticity, scientific integrity, artistic quality. All panelists emphasize the necessity of engaging in an iterative co-design process that is closely coupled to all stakeholders to navigate these tensions. Several tensions they describe closely parallel those that have emerged in disability studies’ critique of disability simulation (p.28 [41]). However, the importance of finding an authentic representation that resonates with the audience cannot be overstated. There is an enormous amount of fear in the general public surrounding neurodegenerative conditions, and dementia is the most feared condition facing the older population. An authentic representation of neurodegenerative conditions through the arts can provide a safe avenue for members of the public to confront these fears, which are often exacerbated by stigma, and may even dispel them by showing possibilities for living well with these conditions. As a result, reaching the broader public has been important to us all. We have tried to do this by hosting public events, making artistic output available on YouTube or for download, and engaging with the public in talk-back sessions and evaluations to understand the ways in which they are engaging with the art we produce.

Conclusion

In this conversation we have shared examples from our own work of engaging individuals with Parkinson’s and dementia in research through the arts, strategies we have used and challenges we have experienced regarding shifting power dynamics, navigating questions of representation, and exploring the transformative power of the arts across diverse artistic approaches. We each seek to disrupt the narrow “disease and cure” narratives that surround Parkinson’s disease and dementia, using arts-based research processes to bring the “embodied, the sensuous and the emotional to the forefront” [42] p. 290), and to represent the complexities of lived experience in a manner that moves audiences to an “empathetic participation in the lives of others” (Barone and Eisner, 2012, p.8–9)​​ [43]. It is our hope that this conversation will inspire others to draw on the power and complexities of arts-based approaches for the co-production of knowledge so that we can collectively transform societal representation of neurological conditions.