Jennifer Gillies’s research while affiliated with University of Waterloo and other places

Little research has examined the lasting impact of the arts. As part of a longitudinal research project, we set out to examine how personal images, understandings, and actions of family members (FMs) of persons with dementia and health care professionals (HCPs) change after the introduction of a research-based drama about the experiences of living with dementia called I'm Still Here. This article focuses on the shorter- (6 weeks) and longer-term (12 months) experiences of engaging with I'm Still Here and how those experiences triggered personal transformation. Informed by phenomenology, this article presents findings from follow-up telephone interviews conducted 6 weeks and 12 months after FMs of persons with dementia and HCPs attended a live performance of I'm Still Here. The phenomenological shifts reflected in the longitudinal data suggest a process of engagement with research-based drama that involves four themes: bearing witness to suffering evokes compassion; expanding with new awareness and understanding; finding comfort, confidence, and courage to change; and envisioning and enacting new possibilities. 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. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

In the 1940s, Carl Rogers introduced the notion of a client-centred or person-centred approach, originally called the ‘non-directive approach’. Over the past several decades, however, we have lost sight of the true intent behind Roger's relational approach, settling instead on well-intended but often paternalistic approaches that place patients or clients at the centre of care, but rarely, if ever, actively involve them in decision-making. This is no more apparent than in the case of persons living with Alzheimer's disease and other related dementias who, due to the stigma and misunderstanding surrounding dementia, are often assumed to lack the capacity to be involved in their own care and the care of others. Drawing on our experience working directly with persons with dementia, family members and professionals, and systematic research on a number of mutual partnership initiatives, the purpose of this paper is to present an alternative approach, one that views persons with dementia as equal partners in the context of dementia care, support and formal services.

In the 1940s, Carl Rogers introduced the notion of a client-centred or person-centred approach, originally called the ‘non-directive approach’. Over the past several decades, however, we have lost sight of the true intent behind Roger’s relational approach, settling instead on well-intended but often paternalistic approaches that place patients or clients at the centre of care, but rarely, if ever, actively involve them in decision-making. This is no more apparent than in the case of persons living with Alzheimer’s disease and other related dementias who, due to the stigma and misunderstanding surrounding dementia, are often assumed to lack the capacity to be involved in their own care and the care of others. Drawing on our experience working directly with persons with dementia, family members and professionals, and systematic research on a number of mutual partnership initiatives, the purpose of this paper is to present an alternative approach, one that views persons with dementia as equal partners in the context of dementia care, support and formal services.

The aim of this article is to report research findings describing phenomenological shifts, that is, changes in patterns of lived experience, for healthcare professionals who attended a performance of a research-based drama, called I'm Still Here. The research drama, based on six studies, was created to help change the ways persons understand, think about and relate with persons living with dementia. In 2006-2007, 50 healthcare professionals from various disciplines and eight nursing students participated in this study. Participants were recruited from four Canadian cities in the province of Ontario where focus groups were held before and after engaging in a live performance of I'm Still Here. Analysis of focus group transcripts showed shifts in patterns of lived experience for the healthcare professional participants as evident in the participants' descriptions. The phenomenological shifts reflected a move from descriptions of 'diminishing humanness to discerning humanness', from 'disengaged care/mundane relating to reflexive relating in the now', and 'terrifying portrayals of loss to awakening to hopeful possibility'. The shifts described herein are supported with examples from the focus group transcripts. Findings reveal the power of drama as a vibrant and meaningful means of shifting understandings, images and intended actions of healthcare professions which have the potential to affect the lived experiences, relationships and quality of life of persons with dementia.

This article examined how images, understandings, and actions change for family members of persons with dementia after the introduction of a research-based drama called I'm Still Here. Guided by interpretivist phenomenology, a set of seven pre- and post-performance focus groups were conducted with family members (n = 48) in four cities. Findings suggest three major phenomenological shifts occurred for family members and highlight the potential of research-based drama in engaging, awakening, and expanding understandings of dementia.