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Narrative identity and resilience for people in later life with dementia living in care homes: the role of visual arts enrichment activities
Andrew Newman, Bruce Davenport and Teri Howson-Griffiths
Editorial introduction
This chapter is based on data from a large-scale, mixed methods project wherein groups of people with dementia were invited to take part in visual arts activities. The project generated a wide range of data, but this chapter takes a fine-grained approach to analysing the qualitative data from the project. Through this the authors explore the narrative processes and identity work that were evoked through the activities. These are considered from the perspective of resilience to explore how such activities might contribute to the resilience of people with dementia.
Introduction
This chapter explores how visual arts enrichment activities might play a role in the resilience of people in later life living with dementia in care homes, through the development or preservation of narrative identities. This complements previous work on the role of arts enrichment activities in the resilience of older people with dementia (Newman et al, 2018) that originated from the results of the same research project, entitled Dementia and Imagination. That paper concluded that arts enrichment activities support resilience in the domains of creative expression, communication and self-esteem and through their effects on carers and family members. This chapter differs in that it explores the role that the arts enrichment activities might have in supporting narrative agency and expression, and how that might facilitate resilience in older people living with dementia (Randall, 2013). This is viewed as a way through which the personhood of a person living with dementia might be supported or enhanced (Kitwood and Bredin, 1992; Kitwood, 1997). The wider contribution is that the work provides an understanding of the potential of narrative care, where āpeople make sense of their experiences, and indeed their identity, through the creation and sharing of storiesā (Villar and Serrat, 2017, p 44) to improve the lives of people in later life with dementia.
The Dementia and Imagination project examined how arts enrichment activities might improve the lives of people in later life living with dementia in different settings. The research was funded by the UK Arts and Humanities Research Councilās Connected Communities Programme and the UK Economic and Social Research Council (reference AH/J011029/1) and was undertaken between 2013 and 2017.
This chapter begins with the proposition that āthe biographical side of human life is as intricate and dynamic and as critical to consider as, say, the biological side. [ā¦] We are continually constructing stories about our lives, stories that reflect a combination of genetic predisposition, past experience and personal choiceā (Kenyon and Randall, 2015, p 143). However, it might be expected that the nature of dementia, with its associated memory problems and sometimes language difficulties, would mean that constructing a narrative using textual language would be challenging. In response to this, visual arts enrichment activities have the potential to encourage the use of embodied forms of communication, such as those that involve āprimordial and sociocultural characteristics of the body that reside below the threshold of cognitionā (Kontos, 2005, p 559). While not explicitly concerned with āillness narrativesā (Bolaki, 2017), the examples discussed in this chapter do, at times, suggest a āchanging sense of self and identityā (Woods, 2011, p 73) that may or may not be recognised by the individual (in particular see the discussion of participant ND34, later in the chapter). Nevertheless, the approach āvalu[es] the individual as the empowered author-narrator of her own storyā (Woods, 2011, p 73), despite some of the difficulties that, by the nature of their dementia, exist.
This chapter aims to examine how, and the extent to which, resilience in older people with dementia may be facilitated through narrative identities, and the extent to which visual arts enrichment activities may support this. We present the theoretical framework used to support the analysis, followed by a description of the methodology, analysis, results, discussion and conclusion.
Theoretical framework
Narrative and narrative inquiry
The lack of precision about how the terms narrative and narrative inquiry are used means that it is difficult to produce a categorical definition. As is noted by Phoenix et al (2010, p 2), āit is difficult to give a single definition of narrative, or draw a precise boundary around its meaning. In part, this is because it means different things to different people and is used in a variety of ways by different disciplinesā. Riessman (2008, p 11) defines it as āa family of methods for interpreting texts that have in common a storied formā and these texts can be oral, written or visual. None the less, Mishler (1995) suggests that narrative inquiry can be divided into a number of areas for consideration. Those relevant for this study are:
ā¢ representation ā temporal sequence of events;
ā¢ linguistic and narrative strategies;
ā¢ cultural, social and psychological contexts and functions of stories; and
ā¢ narrative and culture, myths, rituals and performance.
Narrative and resilience
The approach to resilience adopted in this chapter follows Windle (2011, p 152), who defines it as āthe process of effectively negotiating, adapting to, or managing significant sources of stress or trauma. Assets and resources within the individual, their life and environment facilitate this capacity for adaptation and ābouncing backā in the face of adversity. Across the life course, the experience of resilience will varyā. Links between narrative and resilience are traced through the narrative construction of identity. ā[Identity] is a life story. A life story is a personal myth that an individual begins working on in late adolescence and young adulthood in order to provide his or her life with a purposeā (McAdams, 1993, p 5). This is supported by Singer (2004, p 445), who states that āindividualsā ongoing sense of self in contemporary Western society coheres around a narrative structure, which casts the individual as a protagonist in a lifelong journeyā. Randall (2013, p 9) then makes links with resilience, stating, āresilience itself has a narrative dimension. Itās a function of narrative openness, I propose. Itās a function of a good strong story, a story of oneself and oneās world.ā A strong story might be described as one that has complexity and the resources that allow the person to respond to the narrative challenges they encounter. In a similar vein, Staudinger, Marsiske and Baltes (1995, p 818) suggested that āhaving access to a larger set of well-developed possible selves may be a protective factor as we confront and manage growing oldā, acting as a resource for resilience. These authors also emphasise the importance of hobbies and activities, described as identity projects, as important in the construction of self and, so, resilience. Also of importance is autobiographical reasoning, which is described by Pasupathi and Mansour (2006, p 798) as how people construct a āsense of unity across their lives by creating connections between their experiences and self-viewsā; they also report that the tendency to undertake this increases with age.
The suggestion that resilient older adults will story their lives in particular ways, being āmore detailed and complex in nature ā so to speak stronger overallā, is explored by Randall et al (2015, p 155). These authors used the Connor Davidson Resilience Scale (Connor and Davidson, 2003) to score resilience in 116 community-dwelling older adults. The results showed that the highest scorers had interests and hobbies or āidentity projectsā, a āsense of narrative agencyā and a degree of ānarrative opennessā (Connor and Davidson, 2003, p 157). The lowest scorers demonstrated ānegative or unresolved memories of their childhoodā and were āgenerally less optimisticā and they appeared to have ālow self-esteemā (Connor and Davidson, 2003, p 159). Randall et al (2015, p 156) suggested that ānarrative identity continues all life long, ageing being no exceptionā and that the challenges that older people face can āconstitute challenges to our very sense of selfā.
A possible threat to the resilience of people in later life is ānarrative foreclosureā, where narrative identity development may falter (Freeman, 2011), implying āthat one already knows the ending of oneās life. No other alternative endings are considered as realisticā (Bohlmeijer et al, 2011, p 365). This situation also shapes the ways that a life narrative is constructed as it becomes static, with a future predestined (Bohlmeijer et al, 2011).
Dubovska et al (2016, p 10) identified a number of thematic lines used by a group of older people in their narrative construction of resilience. These were:
ā¢ interest in life;
ā¢ ability to take pleasure from life;
ā¢ enjoyment of small pleasures;
ā¢ liking to learn new things;
ā¢ liking contact with young people;
ā¢ emphasis on importance of movement;
ā¢ love of life, and;
ā¢ good social relations.
These are used later in the chapter as a way of understanding the autobiographical narrative that resident respondents provided during the interviews.
Narrative identity and dementia
Caddell and Claire (2010, p 121) found that āmost people in the moderate and severe stages of dementia were able, at least to some degree, to construct a narrative which consisted of autobiographical memoriesā and that this process enabled them to preserve aspects of their self, and so identity. However, Hyden and Orulv (2009, p 206) āfound that persons with this diagnosis have problems telling stories on the topics suggested, and that they needed much interactional support in order to produce a narrative which was less chronologically organisedā. These authors also identify that there has been little analysis of spontaneously produced narratives around a self-selected topic, and this is viewed as problematic, as stories are produced in direct relation to their audience. People do not tell their stories in isolation, and āif a dementia sufferer is to sustain his or her part in the social world other people, with their corresponding expectations and performances are requiredā (Kitwood, 1993, p 53). The role of others in the co-production of life stories might be seen as a potentially important contributory factor in the preservation of personhood of persons with dementia (Baldwin, 2008).
This study utilises Baldwinās (2008, p 225) approach to the form and content of stories, which states that āstories can be articulated, for example, as much through dance, movement and artistic expression as they can though language ā if we as readers are sensitive enough to the narrative features of such mediaā. In focusing on arts enrichment activities for those with dementia, this study assumes that narratives can be construct...