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...
Saved in:
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2025-03-01
|
| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-025-00696-1 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1849774441477701632 |
|---|---|
| author | Naila Kuhlmann Pia Kontos Maria Bee Christensen-Strynø Stefanie Blain-Moraes |
| author_facet | Naila Kuhlmann Pia Kontos Maria Bee Christensen-Strynø Stefanie Blain-Moraes |
| author_sort | Naila Kuhlmann |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-57ea9f5a4acb477484b9cd934f9419b4 |
| institution | DOAJ |
| issn | 2056-7529 |
| language | English |
| publishDate | 2025-03-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj-art-57ea9f5a4acb477484b9cd934f9419b42025-08-20T03:01:41ZengBMCResearch Involvement and Engagement2056-75292025-03-011111910.1186/s40900-025-00696-1Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformationNaila Kuhlmann0Pia Kontos1Maria Bee Christensen-Strynø2Stefanie Blain-Moraes3School of Physical and Occupational Therapy, McGill UniversityKITE Research Institute, Toronto Rehabilitation Institute - University Health NetworkSection for Art History and Visual Culture, Department of Arts and Cultural Studies, University of CopenhagenSchool of Physical and Occupational Therapy, McGill UniversityAbstract 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.https://doi.org/10.1186/s40900-025-00696-1Community engagementPatient involvementParkinson’s diseaseDementiaStigmaSocial justice arts |
| spellingShingle | Naila Kuhlmann Pia Kontos Maria Bee Christensen-Strynø Stefanie Blain-Moraes Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation Research Involvement and Engagement Community engagement Patient involvement Parkinson’s disease Dementia Stigma Social justice arts |
| title | Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation |
| title_full | Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation |
| title_fullStr | Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation |
| title_full_unstemmed | Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation |
| title_short | Convergence of neurodegeneration and the arts: a conversation between researchers about stigma, co-creativity, and transformation |
| title_sort | convergence of neurodegeneration and the arts a conversation between researchers about stigma co creativity and transformation |
| topic | Community engagement Patient involvement Parkinson’s disease Dementia Stigma Social justice arts |
| url | https://doi.org/10.1186/s40900-025-00696-1 |
| work_keys_str_mv | AT nailakuhlmann convergenceofneurodegenerationandtheartsaconversationbetweenresearchersaboutstigmacocreativityandtransformation AT piakontos convergenceofneurodegenerationandtheartsaconversationbetweenresearchersaboutstigmacocreativityandtransformation AT mariabeechristensenstrynø convergenceofneurodegenerationandtheartsaconversationbetweenresearchersaboutstigmacocreativityandtransformation AT stefanieblainmoraes convergenceofneurodegenerationandtheartsaconversationbetweenresearchersaboutstigmacocreativityandtransformation |