Implementing and evaluating culturally relevant dance opportunities for people living with dementia in historically excluded and racialised communities: a qualitative case study protocol

Abstract

Background

Engagement with the arts is advocated to reduce stigma and to increase the social inclusion of people living with dementia since the arts powerfully support non-verbal communication, affect and the opportunity to participate in activities that are meaningful to self and others. An example is Sharing Dance Older Adults (SDOA), an innovative, community dance programme that is offered by Canada’s National Ballet School (NBS) intended to support social inclusion by making dance accessible to older adults with a range of physical and cognitive abilities, including people living with dementia. Despite the benefits that SDOA offers people living with dementia and their carers, individuals from historically excluded populations, and more specifically those from racialised groups, have had only limited engagement with the programme. This study thus aims to co-develop with dance artists in the three largest racialised communities in Canada (Black, Chinese and South Asian) culturally relevant SDOA-informed dance opportunities for people living with dementia.

Methods and analysis

This 3-year study (2024–2027) is a multiple-case and intrinsic-case study design informed by critical participatory action research and the Critical Realism and the Arts Research Utilisation Model. For each of the three racialised communities, implementation and data collection will develop across five phases (preimplementation of professional development for dance artists; implementation of professional development for dance artists; postimplementation of professional development for dance artists; implementation of dance programming; and postimplementation of dance programming). Drawing on organisational partnerships in two Canadian provinces for three racialised communities, we plan to recruit older adults living with/without dementia who will attend the dance programming (n=90), formal/informal carers such as nurses and family (n=30), site managers such as directors of care (n=15), dance artists from the case communities (n=15) and NBS dance trainers who teach SDOA (n=2). Data collection strategies include: semistructured e-diary entries; active interviews; and video recordings of dance classes. All e-diary entries, transcriptions of interviews and video clips selected for full verbatim transcription will be analysed concurrently and recursively, using standard thematic analysis techniques.

Ethics and dissemination

All five phases of this study have been approved by the Clinical Trials Ontario (CTO Project ID: 4997, 11 June 2026), which is a streamlined ethics review system for multisite studies. All participants will provide written informed consent before taking part in the study. The outcomes will be shared through articles published in journals, presentations at academic and professional conferences, arts-based community events and other knowledge mobilisation forums that include all partners and collaborators.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Recruitment through partner organisations is a key strength of participatory community-based research but may also introduce selection effects since participants will be limited to individuals connected with these organisations and willing to volunteer.

• The two-province scope will enhance data analysis through the opportunity for comparison but will require follow-up research to explore in depth the transferability of findings with other Black, Chinese and South Asian communities.

• Critical participatory action research and Critical Realism and the Arts Research Utilisation Model are research methodologies that will support community engagement with dance artists and people living with dementia and more explanatory ‘how’, ‘what’ and ‘why’ questions, such as ‘how’ the dance programming is developed, implemented and received.

• The team’s close involvement with Sharing Dance Older Adults is a recognised asset for rigour in participatory community-based research where familiarity and understanding of the culture and context of the intervention supports reflexivity and will thus enhance rigour of analysis.

• The study design is qualitative and does not include quantitative outcome measures to evaluate impact; however, the UK Medical Research Council advocates for a sequential series of phases and use of qualitative methods for the development and evaluation of complex interventions.

Introduction

Globally, over 55 million people are currently living with dementia and this number is projected to rise to 139 million by 2050.¹ Stigma associated with dementia deprives people living with dementia and their families of their human rights and threatens their health, well-being and quality of life.^2–4 This stigma is largely based on a particular cultural imaginary⁵ or collective cultural representation of people living with dementia as being incapable of purposeful and meaningful communication and interaction.⁶ Evidence of this stigma can be seen in the dominance of negative accounts of dementia, particularly in the mass media, that represent life with dementia as inevitable loss and decline or a living death.^{7 8} Stigmatisation of people living with dementia and by extension their families is a significant barrier to their social inclusion, including the lack or denial of opportunities for social engagement, the pursuit of meaningful activities and participation in planning and decision-making in their communities.^{2 3} Limited social inclusion may lead to social isolation and loneliness, further affecting health and well-being of both people living with dementia and their carers.⁹ Moreover, social isolation can be heightened in older adults from racialised groups due to a combination of factors such as language barriers, cultural differences, loss of social networks.¹⁰ As well, older adults are at a risk of experiencing the intersection of stigma related to age, ethnicity and mental illness.¹¹ An emerging body of research on cross-cultural and cross-ethnic variation in the cultural meanings of dementia has identified stigma towards people living with dementia among East/Southeast Asian, South Asian and Black populations.¹² Yet, despite higher prevalence of dementia among some racialised groups,^{13 14} cultural considerations are rarely addressed in current public health efforts to reduce stigma in Canada and elsewhere.^{15 16} This is despite research that has demonstrated that culture can be a source of resilience and strength for both people living with dementia and their families, and that integration of cultural considerations into dementia care is crucial for enhancing well-being and social inclusion.^17–19 Given the mounting evidence of racial disparities in access and experiences of dementia care,^{20 21} culturally adapted approaches to decreasing stigma and enhancing social inclusion are thus warranted to support racialised people in Canada.

In our project, we have decided to use the term racialised as this is a more inclusive way of referring to multiple racial and ethnic identities of individuals who are non-Indigenous and non-White than related terms such as Black, Indigenous and People of Colour (BIPOC) and visible minorities. Referring to people as ‘racialised’ underscores that race is not an essential aspect of an individual, but rather that racial and ethnic categories and hierarchies are created through racialisation—a complex sociocultural and interpersonal process that exposes some individuals to the harms of racism while protecting others from it—and recognises that each ethnic and racial category has its own origins and history.^{22 23}

Decreasing stigma with dance

Engagement with the arts is increasingly advocated to reduce stigma and to increase the social inclusion of people living with dementia since the arts powerfully support non-verbal communication, affect and the opportunity to participate in activities that are meaningful to self and others.^24–26 The most common arts-based programmes in dementia care include music, art therapy and drama.²⁷ More recently, dance is also receiving increasing attention in dementia care for its potential to support intersubjectivity, and embodied or somatic expression, all of which are essential dimensions of experience and care when it comes to dementia.^{24 25 28}

Sharing Dance

Sharing Dance Older Adults (SDOA)^{28 29} is an innovative, community dance programme that is intended to support social inclusion by making dance accessible to older adults with a range of physical and cognitive abilities, including people living with dementia. SDOA emphasises the importance of creative self-expression and prioritises expressive capacities and social interaction. For example, SDOA uses a creative movement approach that encourages participants (ie, ‘dancers’) to express themselves in their own unique way; movement, or inspiration for movement is introduced in the context of a narrative about common knowledge/experiences and it is up to the dancers how they wish to perform or express the movements.

The programme is a joint venture between Baycrest and Canada’s National Ballet School (NBS). The programme was developed in 2013 and has been running in Toronto, Canada since its inception. The programme is also offered as a suite of remotely streamed (prerecorded video stream) dance sessions across Canada for dancers in residential long-term care homes and community settings with on-site facilitators supporting the dancers. Each session involves dances that are accompanied by music that explores multiple genres and styles (eg, classical, jazz, country, pop). For dancers in residential long-term care settings, the programme is typically instructed from a seated-only position to accommodate physical and cognitive challenges. Family members of persons living with dementia, staff and volunteers are also encouraged to participate in each session rather than observe or only support the participation of people living with dementia. Classes are typically offered as 45-minute weekly sessions with research evaluations involving 6–8 weeks of programming.^{30 31} Each dance is guided by both physical and artistic goals, and classes typically include a warm-up dance, dances engaging upper and lower extremities, narrative dances and dances including mirroring, improvisation and singing.

Research has demonstrated multiple benefits of SDOA, including improved physical fitness, enhanced mood and increased social interaction.^{28 31} SDOA has also been found to foster social inclusion for people living with dementia and their carers by supporting embodied, playful and imaginative engagement, connectivity and intersubjectivity and by enhancing communication and creativity.^{28 32 33} Further, opportunities to participate in the programme with people living with dementia were found to challenge dementia-related stigma by highlighting the abilities of people living with dementia and challenging beliefs about who can or should engage with the art form.^{28 32 33} This research strongly suggests that SDOA is uniquely positioned to enrich the lives of people living with dementia.

Given the benefits that dance and SDOA specifically offer people living with dementia and their carers, NBS and Baycrest jointly created a training course in 2016 for dance artists to build their capacity to engage people living with dementia in dance and to broaden the reach of SDOA. However, despite these efforts, internal reports at NBS suggest that racialised groups have had only limited engagement with the training course and SDOA itself. One factor that may influence these communities’ access and engagement with SDOA is that the programme was developed and designed by experts in Eurocentric dance forms (eg, ballet) within a North American context heavily influenced by European culture. In addition, the narratives and the accompanying music largely reflect the experiences and cultural traditions of White North American born individuals (eg, hockey-inspired movements, songs by country singer Dolly Parton), and not the experiences of racialised people in Canada. This is a limitation that applies more broadly to the rarity of programming and dementia care services specific to racialised people, despite research that has highlighted the importance of culturally congruent care.^34–36 Yet, there is also evidence that when such dance programmes are available, they can have significant positive impact on health and well-being of older adults and carers. For example, there is a growing body of research that has explored the benefits of cultural dance with people living with dementia. Salsa dance has been found to improve motor function³⁷ and an intervention using danzon, a Latin ballroom dance, improved positive emotional states and general levels of satisfaction for dancers.³⁸ Improvements in cognitive functioning, mood, balance and quality of life have been associated with participation in Chinese square dance.³⁹ Traditional Greek dancing has led to improvements in cognitive and physical functioning,⁴⁰ global functioning and better quality of life.⁴¹ Japanese bon dance has been found to enhance dance therapy by supporting kinesthetic empathy, relationship-building and relational knowing.⁴²

Research has only just begun to explore the connections between the aesthetics of cultural dance, the distinct aesthetic sensibilities of dancers living with dementia and the importance of congruence between dance programmes and dancers’ history, regional traditions and customs that encompass the stories and myths of a particular way of life, music and songs and rhythmic movements.^40–42 Listening to familiar rhythms and lyrics and engaging in traditional dance movements from your childhood or young adulthood is arguably what triggers the embodied memories that facilitate engagement with the dance in the present moment.^42–44 In contrast to random background music,⁴⁵ familiar songs have been found to help people living with dementia connect with past memories, which in turn support positive health outcomes.⁴⁶ This research on cultural dance and music demonstrates the importance of creating dance opportunities for racialised groups in order to increase their relevance, appeal and acceptance. While artists trained in SDOA are taught to, as much as possible, offer dances relevant to whomever they specifically are dancing with, this can be challenging when one is not familiar with the cultural backgrounds of dancers.

Research objectives and questions

Building on this important research, the overall goal of this study is to support the implementation of accessible and culturally relevant dance opportunities for people living with dementia in Black, Chinese and South Asian communities, which represent the three largest racialised groups in Canada.⁴⁷ To do this, in partnership with organisations in two Canadian provinces (Nova Scotia and Ontario), the central principles and concepts from SDOA will be explored with dance artists from these under-represented communities in the context of their respective culturally grounded aesthetics, emphasising music, rhythm, storytelling and embodied presence. This exploration will inform participating dance artists’ development and implementation of dance opportunities for people living with dementia within their communities.

This research project’s objectives are fourfold: (1) to support the development and implementation of culturally relevant dance opportunities for people living with dementia within these three communities in Canada; (2) to build capacity of dance artists within these communities to sustain dance programming for people living with dementia within their community; (3) to continue to develop partnerships with people and organisations (eg, artists, older adult organisations) from these communities to support the implementation of dance opportunities for people living with dementia, and thereby contribute to sustained and equitable impact beyond the duration of the study and (4) to engage knowledge users (eg, dance artists, community programme administrators) throughout the entirety of the project to optimise uptake of dance programming and maximise research relevance and impact.

Our research questions include (1) how do different culturally specific factors influence the uptake (ie, participation) and impact (ie, perceptions and experiences) of SDOA-informed dance opportunities in Black, Chinese and South Asian communities?; (2) in what ways are teaching methods, principles and concepts from the existing SDOA training effective in supporting dance artists from these communities and in challenging stigma associated with dementia?; (3) in what ways are culturally specific, SDOA-informed dance opportunities effective in terms of uptake and impact?; (4) in what ways do collaborations/partnerships with dance artists and older adult organisations support uptake and impact of dance opportunities within these communities? and (5) what other factors influence the uptake and impact of dance opportunities for people living with dementia in these communities?

Research design and methods

We are employing critical participatory action research (CPAR)^{48 49} and Critical Realism and the Arts Research Utilisation Model (CRARUM)⁵⁰ as the primary research methodologies. CPAR is critical, participatory and action-oriented. It engages intentionally with issues of power, both in the research process and the context of the inquiry. It seeks complex, contextualised understandings by interrogating the status quo, who and what is served by these constructions/approaches, and exposing their implications. It is “committed to co-creating with others contexts for inquiry that are dialogical and emancipatory, [ensuring] that both the process of the research, as well as its fruits, are liberatory.”^{51p. 270} In our study, through cultural collaborations, we will support the creation of dance opportunities for people living with dementia from Black, Chinese, South Asian communities, informed by SDOA principles and concepts. The aim of this work is to support access to and meaningful engagement with dance for people living with dementia from these communities, and to thereby challenge stigma associated with dementia and support human flourishing. Our CPAR process is supported by the theoretical knowledge translation framework—CRARUM⁵⁰ that has informed the design of this study. CRARUM is based on critical realism,⁵² which is a theory that identifies structural (eg, healthcare system, legislation), cultural (eg, social norms, ideologies) and individual (eg, understandings, decision-making) factors, as well as their interrelationship. It not only facilitates understanding of how structural factors can constrain individuals, but also how individuals can reinforce, challenge or transform structural factors. Critical realism also offers a sophisticated approach to programme evaluation by addressing how and why interventions work (or fail) in a particular setting using qualitative methods, and attending to contextual factors that can enable or constrain change efforts. This provides a clearer direction for action by generating knowledge of outcomes and of factors that influence the occurrence or absence of outcomes. Critical realism has been used in health services research to explore situated and complex social phenomena including staff decision-making,^{53 54} chronic disease self-care⁵⁵ and experiences of stigma.⁵⁶

Following a guiding principle of CRARUM—that interventions should be adapted to the implementation setting to optimise uptake—we will work with our collaborators/partners, including dance artists, to support the development of dance opportunities for cultural particularities of the communities with which we will engage. Further, in recognition that multiple forms of systemic inequalities (eg, ageism, sexism, racism, heteronormativity, ableism, poverty) can influence stigma associated with dementia, we will also incorporate the Sex- and Gender-Based Analysis Plus (SGBA+) theoretical framework^57–59 to ensure that the adaptation and its evaluation will take into account the influence of multiple and intersecting forms of privilege and disadvantage (eg, based on ability, gender, age, sexual orientation, socioeconomic status, race/ethnicity) on the uptake and impact of the dance opportunities developed. To this end, in our engagement with each racialised community we will consider how these structural forces have influenced the ageing experience and how that lends itself to the dementia journey. Within each racialised community, there is a storied history, and continued forms of social exclusion and oppression particular to each group that must be incorporated into research with them. To honour this, our researchers will work with and consult with leaders from each community for guidance and insights into best practices on engagement around dementia and seniors’ health and well-being, while being open to the lived experiences of each group and how that may present during this project.

An additional strength of CRARUM is that it identifies the arts (eg, drama, film, images) as a novel and effective knowledge mobilisation strategy that offers precisely the innovation in pedagogy that implementation science advocates for knowledge mobilisation and social change.⁵⁰ For example, in the exchange of ideas with dance artists, we will be using the arts as a novel pedagogical strategy (ie, the documentary film Dancer Not Dementia that features SDOA in residential long-term care homes—(https://www.youtube.com/watch?v=gHIh4bFvmIk). This will facilitate critical reflection among dance artists about stigma associated with dementia and how dance can support creative self-expression, playful and imaginative engagement, and social inclusion; this will support the successful implementation of SDOA-informed dance opportunities in the communities with which we will engage. Such critical reflection has been shown to trigger individual and social/organisational change (eg, policy development, practice change).^{4 30 60 61} Further, research on the impact of Dancer Not Dementia with residents of residential aged care settings (including people living with dementia), family members, healthcare practitioners and managers, policy makers, members of the dance community and the general public has demonstrated the ways that the film challenges stigma by supporting the capacity of audiences to see individuals living with dementia as relational (ie, embodied and interconnected with the world).⁴

Case methodology

We will support implementation of dance opportunities in three racialised communities using a multiple-case (ie, three case studies) and intrinsic-case study design. Case study design is the preferred strategy when trying to explain complex social phenomena.^62–64 The strength of this methodology is that it investigates a phenomenon within its real-life context and addresses situations in which the boundaries between the phenomenon and its context are not clearly evident. The ‘unit of analysis’ in case study research can be an individual, a group, an organisation or a community.⁶³ In contrast to experimental designs, which seek to test a specific hypothesis through deliberately manipulating the environment, the case study approach lends itself well to capturing information on more explanatory ‘how’, ‘what’ and ‘why’ questions, such as ‘how is the intervention being implemented and received on the ground?’ In an intrinsic case study, the case is selected not because it is representative of other cases, but because of its uniqueness, which is of genuine interest to the researchers.⁶⁵

The exploratory, in-depth and labour-intensive methodological nature of this proposed study necessitates that the case study units must be few. A three-case design (ie, Black, Chinese, South Asian) in Nova Scotia and Ontario increases robustness by allowing for case comparisons and theoretical replication. The cases will facilitate a more comprehensive understanding of the role that contextual contingencies play in the implementation, uptake and impact of dance programming in these historically excluded communities. We will also include an ‘embedded’ case study design⁶⁶ in which subunits and subprocesses are examined within each case. The subunits of analysis will include older adult individuals living with or without dementia attending the dance programming, formal/informal carers, managers of the organisations we have partnered with, dance artists from the case communities, NBS dance trainers and the subprocess of analysis will be their interrelationships. Examining subunits and subprocesses facilitates a more detailed level of inquiry to assist in bringing a richness of understanding within and across the cases.

The study implementation of the three cases is designed to overlap so that they are run sequentially. This will allow us to benefit from cumulative learnings by revising and strengthening implementation strategies as the cases unfold. This design will also allow for ongoing adaptive co-development with collaborators/partners, including dance artists, and the establishing of new partnerships over the course of the study, all of which will support bidirectional learning and knowledge production that is grounded in, and driven by, a co-design model that prioritises the experiences and interests of the communities involved.⁶⁷ Co-development will also strengthen the likelihood for successful integration and spread of dance opportunities for people living with dementia with the case communities.

Research participants

Across the three case communities (ie, Black, Chinese, South Asian communities), we plan to recruit research participants from the following five groups: (1) older adults attending the dance programming (‘dancers living with/without dementia’), n=90; (2) formal/informal carers (eg, nurse, personal support worker, recreationist, family), n=30; (3) site managers (eg, director of care), n=15; (4) dance artists from the case communities, n=15 and (5) NBS dance trainers who teach SDOA, n=2. The proposed sample is designed to provide adequate ‘information power’ for the planned within-case and cross-case analyses.⁶⁸

The following are the inclusion criteria: older adults living with/without dementia belonging to one of the three case communities (Black, Chinese, South Asian communities) and attending the dance programming (given the exploratory nature of the study, all older adults in the dance programming will be invited to participate in data collection to inform our understanding of their experiences with the culturally relevant dance opportunities offered); formal/informal carers and site managers supporting older adults attending the dance programming sites/locations; dance artists with professional dance experience (eg, performing, teaching dance) and belonging to one of the three case communities (Black, Chinese, South Asian communities); NBS dance trainers with experience in providing training for the SDOA programme and offering the training for this study.

For feasibility, all participants will be recruited via our partner organisations based in Nova Scotia and Ontario. For each of the three case communities (ie, Black, Chinese, and South Asian communities), there will be one to three sites from which we will recruit (ie, one to three sites for each case community). These sites within each of the case communities include community and/or residential care settings. Our recruitment will be intersectional, and we will use both purposive and quota sampling⁶⁹ to ensure a more diverse sample representation, including actively seeking participation from individuals who identify with overlapping identities (eg, South Asian, female and low socioeconomic status).⁷⁰

Participants in each case community will be recruited over an 8-week period. Our partners/collaborators will facilitate recruitment by reaching out to potential dance session participants, formal/informal carers, site managers, dance artists and NBS dance trainers. Those who agree will be contacted by a research assistant who will provide an information letter describing the study and requirements of participation, and answer any questions. Following this, consent will be obtained from all who agree to participate. In accordance with local ethical requirements and with relational and process-based models of consent-seeking,^{71 72} we will also obtain consent or proxy consent where appropriate and necessary for the persons living with dementia to participate. We will additionally obtain from them assent⁷³ for each research encounter based on interpretation of participants’ verbal and gestural cues. Finally, consent for video recording will be sought from the older adults who will be enrolled in the study. For any individuals who are not part of the study, care will be taken not to capture them on video, and in instances where this may be unavoidable, video filters will be used to anonymise those individuals.

Phases of implementation

For each case community, implementation and data collection will develop across five phases:

• Phase I (preimplementation of professional development for dance artists): With the support of our collaborators/partners, we will recruit dance artists from the three case communities to participate in a professional development week. Two dance trainers from NBS who teach SDOA classes will also be recruited to participate in the professional development week. The dance artists and the NBS dance trainers will complete a demographic and background information questionnaire.

• Phase II (implementation of professional development for dance artists): The 1-week professional development will be co-facilitated by SDOA trainers from NBS and the project lead dance artist from the case community. The professional development week will focus on: respectful exploration of central principles and concepts from SDOA in the context of Black, Chinese and South Asian culturally grounded aesthetics, emphasising music, rhythm, storytelling and embodied presence; cultural sharing of Black, Chinese and South Asian dance vocabularies and culturally relevant and historically specific experiences to inform the development of new dance narratives; important considerations when dancing with older adults, including those living with dementia; key principles of SDOA which will grow in culturally specific ways through partnerships with dance artists from case communities; and challenging stigma associated with dementia through the power of dance. Each day runs from approximately 9:30 to 16:30. Some of the key activities to support these foci include an opportunity to experience dance in age-simulation gear, movement exercises that explore the principles of SDOA, discussion about dementia-related stigma, workshopping dances as a group to develop the dance offerings and prepare for implementing the dance programming for their respective community, and 2–3 trial dance sessions in the case community with people living with dementia. Dance artists and NBS dance trainers will keep an e-diary during the professional development week to capture participant experiences and reflections.

• Phase III (postimplementation of professional development for dance artists): Dance artists and NBS dance trainers will participate in an interview to explore in greater depth their perceptions of dance in the context of dementia, including any changes in these perceptions, the process of co-creating dance opportunities for people living with dementia, and any challenges/tensions with this process.

• Phase IV (implementation of dance programming): The culturally grounded dance programming will be implemented (6–8 dance sessions at each site). With the support of our collaborators/partners, older adults attending the dance programming, formal/informal carers and site managers will be recruited and will complete a demographic and background information questionnaire. Dance sessions will be video-recorded and dance artists and NBS dance trainers will keep an e-diary each session of the dance programming to capture participant experiences and reflections.

• Phase V (postimplementation of dance programming): Interviews will be conducted to understand the uptake and impact of the dance programming. Video-recordings and e-diary entries from phase IV will also inform understandings of uptake and impact. New partnerships with people and organisations (eg, artists, older adult organisations) from the case communities will also be sought to further implement dance opportunities thereby contributing to sustained and equitable impact beyond the duration of the study.

Data collection strategies

In order to address our research questions, a multimethod qualitative design is proposed that replicates the protocol we followed in our previous CIHR-funded evaluation of SDOA.^{74 75} A theoretically informed qualitative design is recommended where contextualised understandings of how an intervention induces change are of interest, as well as details on the most important enablers and constraints on its delivery across a range of settings.^{50 76} Qualitative methods are thus optimally suited in this study to explore culturally specific elements of stigma associated with dementia, as well as providing a depth of understanding of the processes related to the professional development and dance programming development and their uptake, and impact within the three case communities involved.⁷⁷ Furthermore, using a similar design strategy for this project will allow for appropriate comparisons to be considered between research evaluating SDOA and the dance opportunities that emerge from this project for Black, Chinese and South Asian communities.

Following enrolment in the study in phase I, the dance artists and NBS dance trainers will be asked to complete a demographic and background information questionnaire for descriptive purposes. Following enrolment in the study in phase IV, older adults attending the dance programming, formal/informal carers and site managers will also be asked to complete a demographic and background information questionnaire for descriptive purposes. Questions will include, for example, race and ethnicity, gender, age, years of experience with dementia, and years of education.

In phase II, dance artists and NBS dance trainers will record their experiences and reflections in a daily semistructured e-diary during the professional development week. This is a method that has been shown to be appropriate for acquiring in-depth, sensitive information in an unobtrusive manner as events happen and over time.⁷⁸ This method was successfully used in an evaluation study of SDOA⁷⁵ and was found to have helped participants to identify significant moments or events that supported stigma reduction, as well as those that served as barriers to stigma reduction. E-diary entries will also be collected from dance artists and NBS dance trainers in phase IV during the implementation of the dance programming. E-diary entries will specifically focus on: elucidating the dance artists’ perceptions of their culture and dance traditions as well as perceptions of dementia, including any changes in these perceptions; any challenges/tensions regarding the modifications made and congruency with the principles of SDOA (see online supplemental file 1 ‘E-Diary Prompts’).

In phase III, individual active interviews⁷⁹ will be conducted with the dance artists and NBS dance trainers in order to complement and enrich the data collected from the e-diary entries of the dance artists. In this style of interviewing, the interviewer and interviewee are co-constructors of meaning, actively participating in shaping the interview’s direction and content; the interview is conversational, capitalises on the dynamic interplay between researcher and participant, and involves mutual disclosure and sharing. This will allow us to gain ‘more reflective’ understandings of the decisions/experiences/perceptions⁸⁰ noted in the e-diary entries. The interviews will also allow us to explore aspects related to the professional development week that might not have been recorded in their e-diaries. Individual active interviews⁷⁹ will also be conducted in phase V with a subsample of older adults attending the dance programming (n=60), and all participants from the other participant groups (n=62), to support the evaluation of the uptake and impact of the dance programming developed during the study. Interviews will explore the following: the ways in which the professional development experience was effective/ineffective in conveying the key principles of SDOA to artists and in challenging stigma associated with dementia; key aspects of the process that supported or did not support the development of culturally grounded aesthetics, emphasising music, rhythm, storytelling, and embodied presence and how this influences uptake and impact within the identified community; the ways in which our partnerships with artists and older adult organisations supported or did not support the uptake and impact of the developed dance programming; and other factors that may have influenced the uptake and impact of dance programming for people living with dementia in Black, Chinese and South Asian communities. See online supplemental file 2 ‘Interview Guides’.

Because the data collection instruments were designed for qualitative inquiry, formal psychometric validation was not undertaken. Instead, rigour was enhanced through development based on the literature and study objectives, and review by team members experienced in doing qualitative research to ensure the clarity, sequencing, completeness and appropriateness of the questions.

In phase IV, the dance sessions (6–8 sessions per site; one to three sites in each case community; n=18–72) will be video-recorded using multiple video cameras and tripods to capture the entire class, including the dance artist leading the class. Footage from different angles/positions will capture the nuances of movements and expressions through dance. Two advantages of using video recordings as a research resource are density (the physical, emotional and sensory dimensions of communication that are embodied in detailed speech and nuanced gesture), and permanence, making it possible to review events as often as necessary in a variety of ways (eg, real time, slow motion, frame by frame, forward, backward) in order to direct attention to different features of the occurrence.^{81 82} Our team has experience working with this type of video data^{28 82} and has found that given the nuanced and highly diverse nature of physical and artistic expression through dance, these advantages are key to supporting our analysis of the impact of the programming on dance participants. The team will draw on the video data to inform exploration in phase V interviews.

For phases I–V of the study, dance artists will receive honouraria totalling CAN$2100 (CAN$70/hour×30 hours) to thank them for their time in participating in the professional development and completing data collection activities (ie, demographic questionnaire, e-diaries, interviews). For phases IV–V of the study, older adults attending the dance programming, formal/informal carers and site managers will receive a CAN$20 gift card to thank them for their time in completing the demographic questionnaire and interview. NBS dance trainers will not receive any honoraria because their time on the study will be done during their regular working hours, which NBS will support as an in-kind contribution.

Analysis

Analysis of the video footage will begin with descriptively classifying all of the footage and deciding which videos/interactions will be selected for microanalysis and full verbatim transcription to ensure accuracy and inclusion of expressive detail^{83 84} and to allow for analysis of embodied social interaction.^{85 86} Specifically, we will use the Video Coding—Incorporating Observed Emotion (VC-IOE) protocol^{87 88} that focuses on six dimensions (and their interrelationship) of engagement of people living with dementia: facial emotional response (ie, pleasure, anxiety/fear, anger, sadness, general alertness, none); verbal engagement (ie, positive verbal engagement with stimulus, positive verbal engagement with facilitator, negative verbal engagement, no verbal engagement, missing); visual alertness/engagement (ie, visually engaged with stimulus, visually engaged with facilitator/others, no visual engagement, missing visual); behavioural engagement (ie, positive behavioural engagement, negative behavioural engagement, no behavioural engagement, missing behaviour); collective engagement (ie, using stimulus for collective engagement, no evidence of collective engagement); and agitation (ie, evidence of agitation and no evidence of agitation). VC-IOE will be used to capture observable indicators of uptake (ie, participation) including verbal, visual, behavioural and collective engagement, as well as facial emotional responses and signs of agitation. Authors RJB, PK and RC, who have expertise in analysis of video data, will watch the entire corpus of video footage of dance classes several times, as is recommended when working with this data type.^{82 89} The same authors will then code all selected videos based on this protocol by timestamp, noting participants’ engagement, including physical movement, facial and gestural expressions, and interactions that convey for example joy, sadness or a neutral affect. This coding will then be reviewed to identify clips for a deeper ‘microanalysis’ to explore key moments and interactions, including verbal and nonverbal social and affective gestures, exchanges and emotive and creative expressions.⁸² These identified clips will then be transcribed as nonparticipant observer field notes. Transcripts will be time-stamped and synchronised with the corresponding video and audio section. Once the transcripts are created, video portions will be coded and organised into thematic collections where portions of the same collection (ie, similarly coded) will be compared and discussed with the other authors to negotiate any differences in interpretation and to collectively finalise the video clips by theme.

Interviews will be transcribed verbatim and verified for accuracy. Video data will be triangulated with participants’ interviews and e-diaries to assess impact (ie, perceptions and experiences). All e-diary entries, transcriptions of interviews and identified video clips will be analysed concurrently and recursively, using standard thematic analysis techniques⁹⁰ and with reference to critical realism, which is part of the CRARUM framework, as well as SGBA+. Authors RJB, PK and RC who have expertise in doing critical qualitative health research will read and reread all qualitative data and descriptive codes of analysis will be attached to segments of the texts. Consistent with critical realism, these descriptive codes will then be grouped into broad, topic-oriented categories. These categories will include the effectiveness of the professional development as it relates to the principles of SDOA and in challenging stigma; the effective development of culturally grounded aesthetics, emphasising music, rhythm, storytelling and embodied presence and how this influences uptake and impact within the identified community; and other factors that may have influenced its uptake and impact. Our analysis will incorporate an intersectional framing and we will consider the influence of multiple social categories and social relations from a historical, experiential and representational perspective. This will include both inductive and deductive coding to compare within and across all three case communities to explore the ways in which cultural dynamics and experiences are influenced by intersecting social locations (eg, age, gender and class).⁶⁹ Text segments belonging to the same category will be compared within and across the different types of data and stakeholder groups, and then discussed with the other authors to negotiate any differences in interpretation, and to collectively refine and finalise the themes. Once final themes are decided on, the data will be entered into NVivo, a qualitative analysis software, and coded.

The researchers will be attuned to criteria established for judging the rigour and authenticity of constructionist research (ie, balance in perspectives and voices; raised level of awareness and growth among participants).⁹¹ Dependability and confirmability will be established through an audit⁹² that involves a methodologically self-critical account of research conduct. Theoretical transferability will be addressed with the provision of sufficient detail to assess the range and applicability of findings⁹² vis-à-vis the ‘fittingness’ or degree of concurrence between our study context and other contexts.⁹³

Ethics and dissemination

All five phases of the study protocol, including all consent forms, have been approved by the Clinical Trials Ontario (CTO Project ID: 4997, 11 June 2026), which is a streamlined ethics review system for multisite studies. All participants will provide written informed consent before taking part in the study. The outcomes will be shared through articles published in journals, presentations at academic and professional conferences, arts-based community events and other knowledge mobilisation forums that include all partners and collaborators.

Discussion

Research suggests that SDOA is uniquely positioned to challenge stigma associated with dementia, support social inclusion and enrich the lives of people living with dementia. However, racialised communities in Canada have had only limited engagement with SDOA. To support the implementation of accessible and culturally relevant dance opportunities for people living with dementia in Black, Chinese, and South Asian communities in Canada, this project aims to increase access and engagement to dance programming for people living with dementia from these communities. Central principles and concepts from SDOA will be explored with dance artists from these under-represented communities in the context of their respective culturally grounded aesthetics, emphasising music, rhythm, storytelling and embodied presence. This exploration will inform participating dance artists’ development and implementation of dance opportunities for people living with dementia within their communities.

Recruitment through partner organisations is a strength of participatory community-based research^{49 94} but may also introduce selection effects since participants will be limited to individuals connected with these organisations and willing to volunteer. The findings will therefore necessarily reflect the perspectives of participants recruited through these organisations and may not capture a broader range of experiences in terms of participation and impact. The two-province scope will enhance data analysis through the opportunity for comparison but will require follow-up research to explore in depth the transferability of findings with other Black, Chinese and South Asian communities. Finally, the team’s close involvement with SDOA is a recognised asset for rigour in participatory community-based research where familiarity and understanding of the culture and context of the intervention supports reflexivity^{49 95} and will thus enhance rigour of analysis. The potential influence of all of these study design factors will be a critical focus for reflexivity in order to ensure the trustworthiness of the findings.

Though our study design does not include quantitative outcome measures to measure impact, our qualitative exploratory study is a necessary first step towards a more fulsome evaluation of culturally grounded dance opportunities for people living with dementia; this follows phases I and II of the UK Medical Research Council that advocates for modelling and exploratory trial phases along with the use of qualitative methods for the development and evaluation of a complex intervention prior to a definitive randomised controlled trial.⁷⁶ CPAR and CRARUM are research methodologies that will not only support community engagement with dance artists and people living with dementia, but also more explanatory ‘how’, ‘what’ and ‘why’ questions, such as ‘how’ the dance programming is developed, implemented and received. An additional strength of this study is that it will help to challenge stigma associated with dementia, support social inclusion and enrich the lives of people living with dementia in Black, Chinese and South Asian communities by offering culturally relevant dance programming. Further, the knowledge gained from this study about contextualised understandings of how to culturally ground dance opportunities for people living with dementia will importantly inform continued efforts to create accessible dance opportunities for people living with dementia across the diversity of Canada. Thus, the proposed study has enormous potential to not only build the capacity of dance artists from historically excluded and racialised communities to expand their practice by offering culturally grounded and accessible dance programming for people living with dementia but also contribute to sustained and equitable impact well beyond the duration of this study.