The art of living well with dementia: Methodological and ethical reflections on an evolving co-creative process

Format Type

Plenary

Format Type

Paper

Start Date

13-1-2021 3:50 PM

End Date

13-1-2021 4:10 PM

Abstract

Whether through poetry, storytelling or the visual arts, opportunities to engage collectively in creative activity have enabled people living with dementia to contribute in new ways to our understanding of lived experiences of dementia. From a methodological perspective, however, there are many unexplored aspects of how such a co-creative process works, and what it may mean for the agency and expression of individual participants.

As part of our research on what it means to live well with dementia to the end of life, we conducted a series of arts-based workshops with individuals living with dementia and their care partners. The focus of the art-making and sharing was exploring what participants would like others in their community to know about what it means to live well with dementia. Our data includes observational fieldnotes, photographs, video from 4 in person and 4 online arts-based workshops and follow-up interviews with participants.

Focusing on what we learned through our evolving co-creative approach, we reflect here on three issues: 1) going with the flow by working within a dynamic relational context; 2) respecting the muse by supporting an imaginative and creative risk-taking process; and 3) circling between the making and sharing by enabling personal and collective meaning to emerge. We discuss the implications of these issues for how creative participation in research of people living with dementia might be further developed and in light of the trustworthiness of claims that might be made about understandings of their lived experience that are generated through creative practice.

Keywords

visual arts, dementia, research methods, creative process

ORCID ID

0000-0001-7459-9587

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Jan 13th, 3:50 PM Jan 13th, 4:10 PM

The art of living well with dementia: Methodological and ethical reflections on an evolving co-creative process

Whether through poetry, storytelling or the visual arts, opportunities to engage collectively in creative activity have enabled people living with dementia to contribute in new ways to our understanding of lived experiences of dementia. From a methodological perspective, however, there are many unexplored aspects of how such a co-creative process works, and what it may mean for the agency and expression of individual participants.

As part of our research on what it means to live well with dementia to the end of life, we conducted a series of arts-based workshops with individuals living with dementia and their care partners. The focus of the art-making and sharing was exploring what participants would like others in their community to know about what it means to live well with dementia. Our data includes observational fieldnotes, photographs, video from 4 in person and 4 online arts-based workshops and follow-up interviews with participants.

Focusing on what we learned through our evolving co-creative approach, we reflect here on three issues: 1) going with the flow by working within a dynamic relational context; 2) respecting the muse by supporting an imaginative and creative risk-taking process; and 3) circling between the making and sharing by enabling personal and collective meaning to emerge. We discuss the implications of these issues for how creative participation in research of people living with dementia might be further developed and in light of the trustworthiness of claims that might be made about understandings of their lived experience that are generated through creative practice.