Igniting Transformative Change in Dementia Care Through Research-based Drama

Dupuis, Sherry L.; Mitchell, Gail J.; Jonas-Simpson, Christine; Whyte, Colleen; Gillies, Jennifer; Carson, Jennifer

doi:10.1093/geront/gnv062

Cited by 23 publications

(24 citation statements)

References 28 publications

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“…As stated by Dupuis et al [29], "An 'authentic partnership' actively incorporates and values diverse perspectives and includes all key stakeholder voices directly (including [those of] people living with dementia) in decision-making. It involves working with others, not for others."…”

Section: A Positive Approach To Inclusionmentioning

confidence: 99%

Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being

Reed

Carson

Gibb

2017

AMA Journal of Ethics

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Supporting people living with dementia in maintaining selfhood, relationships, and well-being requires seeing beyond the common negative focus on disability. Furthermore, prioritizing the person rather than the disease requires rejecting the tragedy discourse, which is the negative lens through which dementia is typically considered. In this paper, we highlight qualitative research on dementia involving people living with dementia as active participants. Recognizing that many people living with dementia remain capable of making decisions that affect their lives, we highlight a research-based approach to support known as "authentic partnerships" that includes people living with dementia as equal partners. We conclude by proposing eight beliefs to mobilize positive change in transcending the tragedy discourse of dementia, thereby opening a space for selfhood, relationships, and well-being. IntroductionWith an estimated 5.4 million people living with Alzheimer's disease in the United States [1] and almost 50 million worldwide [2], an essential question is the extent to which our society, communities, and health care professionals support people in living well with dementia, rather than focusing exclusively on managing or treating a disease. It is the authors' contention that the dominant view of dementia is grounded in a "tragedy discourse," which emphasizes the loss of both ability and identity [3,4], and that this view directly harms people living with dementia above and beyond the effects of the pathology of any disease. In this paper, we first show that the negative impact of the tragedy discourse can be readily understood by listening to people living with dementia talk about their experiences and by considering how they are commonly characterized in the public sphere. We then show that care partners can promote well-being through including and engaging persons living with dementia in decision making. However, we contend that the dominant frame for understanding dementia, the tragedy discourse, promotes stigma and is used as an inappropriate justification for denying persons with dementia opportunities for autonomy and engagement, thus threatening their wellbeing.

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Section: A Positive Approach To Inclusionmentioning

confidence: 99%

Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being

Reed

Carson

Gibb

2017

AMA Journal of Ethics

View full text Add to dashboard Cite

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“…A final limitation comes from the lack of ability in determining the performances long-term effects on perception. While this study did not record a longitudinal follow up ensuring long term affect change, Dupuis et al suggests a significant lasting effect following theater performance is possible [11]. Nevertheless, we believe our experience can serve as an example for future community/research collaborations.…”

Section: Discussionmentioning

confidence: 81%

“…Previous research [11, 14, 15, 16] has focused mainly on educating health care workers, caretakers, and diagnosed patients. Those prior studies directly engaged with individuals involved in the dementia care process, and demonstrated an increase in understanding and caretaking approaches among their target audience.…”

Section: Discussionmentioning

confidence: 99%

“…Theatre performances portraying dementia specifically, have shown a lasting impact on audiences in the form of positively transformed behavior and perception. For example, one recent study showed that individuals exposed to a performance about dementia experienced a long-term change to a more positive affect [11]. Employing self-revelatory performance methods promotes a positive learning experience for the cast and audience members [8], and can ultimately lead to a shift in opinions of stigmatized diseases [11].…”

Section: Introductionmentioning

confidence: 99%

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The Impact of Creative Arts in Alzheimer’s Disease and Dementia Public Health Education

Burns

Watts

Perales

et al. 2018

JAD

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Previous research involving dramatic performances about Alzheimer's disease and dementia perception have targeted health care workers or caretakers. We examined the influence of a theater performance on the emotional affect of a general audience to determine the utility of this type of theater in large-scale public health education efforts. Our study included 147 participants that attended a self-revelatory theater performance based on the social/relationship experiences of those with dementia and those who care for them. This type of theater engages the audience and actors in a dual transformative process, supporting the emotional growth of all involved. Participants completed pre- and post-performance questionnaires regarding their beliefs and feelings surrounding the topic of dementia and the importance of the Arts for educating on issues surrounding dementia care. We tested for change in emotional affect pre- and post-performance using sensitivity and center of gravity statistical analyses. We found a significant change in emotional affect from an initial strong negative affect to slightly more positive/relaxed view after viewing the performance. Findings support self-revelatory theater as a resource to destigmatize preconceived notions of dementia. Large-scale community health education efforts could benefit from using this style of theater to elicit a change in audience perception of disease realities.

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“…The only concession being if the aim is to show to audiences why this portrayal is wrong, whether directly in a show or via supplementary material. Theatre has the power to change perceptions of disability (Dupuis et al 2016(Dupuis et al , 1050. Consequently it should be supported to ensure that it changes perceptions in the right way.…”

Section: Discussionmentioning

confidence: 99%

The Changing Portrayal of Epilepsy in the Theatre

White¹,

Simpson²

2021

Preprint

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The theatre has a tremendous ability to influence public discourse and shape societal opinions. And medical conditions can provide writers with a rich scope for plot development and characters with challenges to overcome. In particular, the neurological condition epilepsy has many possibilities with historical beliefs that people were possessed by gods and devils and the sudden, disabling seizures characteristic of the condition. But used unsympathetically, it can promote misunderstanding within audiences, resulting in discrimination for people with the condition. This review looks back at how epilepsy has been portrayed throughout history. How the Greeks portrayed epilepsy as a punishment from the gods. Then later, how Shakespeare utilised epilepsy to suggest characters as uncontrollable. However, we finish on a message of hope as modern writers look to collaboration to ensure accurate and honest portrayals of epilepsy, improving public understanding and removing many of the stigmas that have dogged the condition.

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Igniting Transformative Change in Dementia Care Through Research-based Drama

Abstract: Findings demonstrate the possibilities of the arts for knowledge mobilization in changing the culture of dementia care through a process of illuminating new and enduring realizations and transforming actions and practices.

Cited by 23 publications

References 28 publications

Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being

Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being

The Impact of Creative Arts in Alzheimer’s Disease and Dementia Public Health Education

The Changing Portrayal of Epilepsy in the Theatre

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