Dementia Discourse: From Imposed Suffering to Knowing Other-Wise

This work, first published in Journal of Applied Hermeneutics is made available here under the Creative Commons Attribution 3.0 Unported license. https://creativecommons.org/licenses/by/3.0/. Original article available at: http://hdl.handle.net/10515/sy5222rn5The authors revisit the troubling discourse surrounding the diagnosis of dementia. A critique of the predominant words and images in health care literature, public discourse, and policy is considered from multiple angles. The authors link the dominant words and images with a form of inter-relational violence. Contrary images grounded in research and experience offer a different view of what it is like to live with a diagnosis of dementia—a view that is life-affirming and based in relationality and possibility. Concepts of embodied selfhood and knowing other-wise are portrayed as doorways to transforming a discourse of violence toward a discourse of compassion and ethical relating

Knowledge as Embodied, Imaginative and Foolish Enactment: Exploring Dementia Experiences through Theater

In this article, we provide an example of a performance-research project to advance understandings of the ways artistic and scientific processes work in conversation. Drawing on the research-informed play Cracked: New Light on Dementia, we consider the interrelationship among cultural narratives (including the perpetuation of oppressive narratives of marginalized people), aesthetic and artistic exploration (sensory and emotional exploration together with dramaturgy and theatricality), and social critique for the purposes of broader social change. By explicating three interrelated "acts" of our process, including preparation, execution and exhibition (THOMPSON, 2015), we share the ways artistic practices were flexibly used to generate new cultural knowledge about the ways we think, feel, and sense about dementia to mobilize social good. With our work we criticize institutional and research structures that deny arts processes the status of "research," as well as challenge traditional modes of knowledge and knowledge production.In diesem Beitrag berichten wir über ein Beispiel performativer Forschung mit dem Ziel, künstlerische und wissenschaftliche Prozesse besser zu verstehen. Ausgehend von dem Theaterstück "Cracked: New Light on Dementia" beleuchten wir die Beziehung zwischen kulturellen Narrativen (inkl. der Verfestigung unterdrückerischer Narrative über marginalisierte Menschen), ästhetischer und künstlerischer Forschung (sensorisches und emotionales Involvement sowie Dramaturgie und Theatralität) und sozialer Kritik mit dem Ziel breiterer sozialer Veränderungen. An drei miteinander verknüpften "Akten" unseres Forschungsprozesses - Vorbereitung, Ausführung und Ausstellung (THOMPSON 2015) - veranschaulichen wir, wie künstlerische Praktiken flexibel genutzt wurden, um neues kulturelles Wissen darüber zu erzeugen, wie wir Demenz denken, erleben und wahrnehmen, und so ein soziales Gut zu initiieren. Mit unserer Arbeit kritisieren wir institutionelle und wissenschaftliche Strukturen, die Kunst den Status von Forschung absprechen, und wir fordern traditionelle Weisen von Wissen und Wissensproduktion heraus

Strategies to support engagement and continuity of activity during mealtimes for families living with dementia; a qualitative study

This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/). Keller, H. H., Martin, L. S., Dupuis, S., Reimer, H., & Genoe, R. (2015). Strategies to support engagement and continuity of activity during mealtimes for families living with dementia; a qualitative study. BMC Geriatrics, 15(1). https://doi.org/10.1186/s12877-015-0120-2Background Mealtimes are an essential part of living and quality of life for everyone, including persons living with dementia. A longitudinal qualitative study provided understanding of the meaning of mealtimes for persons with dementia and their family care partners. Strategies were specifically described by families to support meaningful mealtimes. The purpose of this manuscript is to describe the strategies devised and used by these families living with dementia. Methods A longitudinal qualitative study was undertaken to explore the meaning and experience of mealtimes for families living with dementia over a three-year period. 27 families [older person with dementia and at least one family care partner] were originally recruited from the community of South-Western Ontario. Individual and dyad interviews were conducted each year. Digitally recorded transcripts were analyzed using grounded theory methodology. Strategies were identified and categorized. Results Strategies to support quality mealtimes were devised by families as they adapted to their evolving lives. General strategies such as living in the moment, as well as strategies specific to maintaining social engagement and continuity of mealtime activities were reported. Conclusions In addition to nutritional benefit, family mealtimes provide important opportunities for persons with dementia and their family care partners to socially engage and continue meaningful roles. Strategies identified by participants provide a basis for further education and support to families living with dementia.Research funding support was provided by the Alzheimer Society of Canada and the Social Sciences and Humanities Research Council

Dementia Discourse: From Imposed Suffering to Knowing Other-Wise

The authors revisit the troubling discourse surrounding the diagnosis of dementia. A critique of the predominant words and images in health care literature, public discourse, and policy is considered from multiple angles. The authors link the dominant words and images with a form of inter-relational violence. Contrary images grounded in research and experience offer a different view of what it is like to live with a diagnosis of dementia—a view that is life-affirming and based in relationality and possibility. Concepts of embodied selfhood and knowing other-wise are portrayed as doorways to transforming a discourse of violence toward a discourse of compassion and ethical relating