Informing literature
In order to support our attempts to address this question, we turn to the work of O’Rourke et al. (2015) who completed a meta-synthesis of qualitative studies that directly sought the perspectives of people living with dementia.Their argument is that any understanding of QoL for people living with dementia must be based on the views of those experiencing it. Here the work ofjing,Willis and Feng (2016) is important, for they have articulated the view that there are considerable differences between QoL factors identified by those living with dementia and factors identified by carers, family members, medical practitioners and researchers. Further, O’Rourke et al. (2015) note that while some individuals living with dementia are quite capable of discussing their QoL with researchers, their perspectives are rarely considered.They suggest (2015,24) that individuals without dementia “find it difficult to imagine a good QoL” for people with dementia, and for this reason they “overemphasize disability by focusing on direct consequences of dementia such as cognitive impairment, dependence, and communication problems”.
The synthesis of research put forward by O’Rourke and colleagues is useful to us in our attempts to identify quality moments in applied theatre work as they have outlined a framework made up of six critical concepts (O’Rourke et al., 2015, 28). The first of these concepts is connectedness, which is a state represented in each of four concepts: relationships (Concept 2), agency in life today (Concept 3), wellness perspective (Concept 4) and sense of place (Concept 5). Concept 6, according to these researchers, is happiness and sadness, described as the outcome of either good or poor QoL. Figure 1.1 provides a visual summary of these concepts and their relationships (O’Rourke et al., 2015,29).
In reflecting on the interactions created within the Playful Engagement project, each of these concepts appears to have relevance, with five being of particular relevance — connectedness, relationships, agency, wellness and emotion.The sixth concept, relating to a “sense of place”, is also highly relevant, but possibly not in the form described by these researchers. Drawing on the studies in their meta-synthesis, they suggest that “sense of place” as a QoL concept should be
Agency in Life Today
Purposeful / Aimless
Figure 1.1 The O’Rourke et al. 2015 model of factors that affect quality of life according to people living with dementia.
used to describe an individual’s satisfaction with the physical environment of their care situation. However, within our study, it appears to have broader influence, with many of the interactions we witnessed being characterised by exploration of place as an aspect of memory, with the immediate physical environment appearing to be less significant.
The remaining five concepts within their framework are more closely aligned. For example, to clarify the concept of connectedness, O’Rourke and colleagues describe it (28) as the “perception of a positive or harmonious linkage between one’s sense of self and one’s experiences of relationships, agency, wellness, and place”. Meanwhile, the concept of relationships describes interactions with a broad range of individuals including family, friends, care staff and other residents. Their meta-synthesis (2015, 28) revealed that contact with others is important, and that a lack of opportunity to interact with others detracts from QoL.They found that in all of the studies they analysed, “relationships characterized by kindness, love, or respect enhanced QoL’’ (28), with these relationships leading to “feeling accepted, listened to, and understood”. Meanwhile, “agency” is described within the framework as the “ability to express one’s sense of self and to experience autonomy and independence in day-to-day living ... being able to determine the structure of daily activities, have a direction in life, or achieve one’s goals” (29). Finally, in relation to wellness, the authors argue that for people living with dementia, wellness relates not simply to their particular experience of living with dementia, but also to their overall experience of health and aging.
Later in this chapter we will draw upon these six concepts to support our examination of a series of vignettes developed in response to data collected across three visits between Heather and the applied theatre artists. These vignettes provide insights into the way songs from childhood, fragmented memories of home, dance, props, narratives of Bonnie Prince Charlie crossing the sea to Skye, and deeply personal reflections on family and loved ones were spontaneously shared and experienced during interactions between Heather, Tiny and Dumpling. Our goal in linking these vignettes and the six QoL concepts is to identify which visits, if any, might be described as “quality moments of life”. First, however, some further background material relating to the practice and research approaches within Playful Engagement is offered.
