“You need to know that you are not alone”: the sustainability of community-based dance programs for people living with Parkinson’s disease

Purpose: To identify factors contributing to the long-term sustainability of community-based dance programs for people living with Parkinson’s disease in order to inform the design and development of sustainable programs. Methods: Multi-site ethnographic fieldwork was conducted at four different preexisting dance programs for people living with Parkinson’s disease. Dancer, facilitator, and community stakeholder perspectives were gathered via semi-structured interviews in order to create a deeper understanding of how existing programs navigate challenges and maintain stability. Transcripts and field notes were analyzed via reflexive thematic analysis. Results: Interviews were conducted with 18 participants (eight dancers with Parkinson’s disease, seven dance facilitators, one classroom assistant, and two community stakeholders). Four key areas for supporting program sustainability were identified: (1) finding an organizational structure that works, (2) balancing funding, fundraisers, and fees, (3) prioritizing dancer experience and satisfaction, and (4) recruiting and retaining committed, high-quality facilitators. Conclusion: Cultivating multiple funding sources; forging strategic connections with local Parkinson’s organizations and arts institutions; building a critical mass of facilitators and administrators with diverse skillsets; offering hybrid online delivery where possible; and ensuring that the dancer experience is low-pressure, varied, and enjoyable can support the long-term sustainability of dance programs for people living with Parkinson’s disease.