An interpretative phenomenological investigation of dementia from the perspective of families and system caregivers: stigma, traumatic loss, psychological growth, and relational social engagement (RSE)

Research Doctorate - Doctor of Philosophy (PhD)Scope: Few studies have investigated distinctive interpersonal characteristics of retained awareness and social engagement observed when individuals at different stages of dementia interact with their family members. Influencing this relational engagement are the subjective interpretations of family caregivers as they experience: (1) the fluctuating psychosocial landscape of dementia pre and post aged-care; (2) perceived psychological consequences of supporting a family member with dementia; (3) the transition to, and navigation of a hierarchical health care system. Additionally, few studies explore the subjective interpretations of health care managers working in dementia including: (1) their perception of their work role; (2) how they interpret the impact of such work on their own psychological wellbeing; and, (3) how they position themselves as witnesses within a health care system that impacts, often authoritatively, on family relationships. Therefore, this thesis is concerned with the relational, psychosocial, and systemic domains of experiencing dementia. The triad of subjective expertise in experiencing dementia, and the relational and social engagement that occurs within this triad, underpins this research document. It seeks to advance our understanding of relational and social engagement throughout the stages of dementia, and inform models of care for optimising that engagement. Objectives: All who experience dementia, either through a diagnosis of dementia, or as a supporting family member or professional caregiver, are vulnerable to psychological distress from chronic and cumulative challenges to their psychological wellbeing. Therefore, this phenomenological interpretative thesis sought the subjective experiences of dementia from a multi-faceted perspective. It sought observational studies of family communicative-interactions seeking to advance our understanding of family adaptation for interpersonal awareness and engagement throughout the stages of dementia, complemented by the subjective lived experience of supporting family members and health care managers. This research sought both positive and negative interpretations of experiences of dementia and aged care. Methodology: Overall, fifty-two participants were involved in this thesis. Video-recordings of family visits, and individual, dyad, and focus group semi-structured interviews provided the thesis data set. Two methodologies were employed, Interpretative Phenomenological Analysis (IPA; Smith, 1996) and Thematic Analysis (Braun & Clarke, 2006). IPA sought reiterative subjective interpretations of the dementia experience from family and professional caregivers. It informed the semi-structured interviews, transcription, and analysis of collected interview data. IPA is an idiographic, hermeneutic, qualitative approach based on phenomenology and interpretative psychology. It aims to capture the idiosyncratic nature of each participant’s narrative and his or her interpreted experiences of rarely researched phenomenon (Smith, 1996). Symbolic interactionism explains the interaction between the researcher and the participant, as it posits that meaning can only be fully understood through the dynamic process of interpretation (Smith, 1996). A double hermeneutic allows both researcher and researched to engage in a reiterative meaning making process of understanding the lived experience. Thematic Analysis conducted on the video-recorded data collected during family visits sought to break down relational and social engagement patterns that included the individual with dementia, into interpreted themes by utilising non-obtrusive observation of families engaged in communication. Thematic Analysis goes beyond observable data to describe the phenomenon under investigation and explore latent patterns of meaning. This makes Thematic Analysis suitable for investigations of complex social phenomenology (Fereday & Muir-Cochrane, 2006; Joffe, 2012). From a critical realist perspective, Thematic Analysis maintains a focus on the individual yet also investigates the sociocultural context as it influences individual interactions (Braun & Clarke, 2006; Willig, 2013). Collectively, superordinate and subordinate themes emerged from all data sets following robust discussion between independent auditors. These provide the results in each relevant chapter. Results: Fifty-two participants across seven studies connect the supporting, close-up, and contextual perspectives on relational and social engagement across a triad of relational and social dementia expertise. As the overarching phenomenological enquiry of this thesis, it linked the individuals with dementia to their family members and the health care managers who support them. A continuum of positive and negative insider perspectives of relational, psychosocial, and systemic aspects of dementia revealed varying patterns of engagement. They also highlighted the psychosocial struggle, the impact of dementia on psychological wellbeing, and the opportunity for psychological growth in these participants. The construct Relational Social Engagement (RSE) developed from the studies in this thesis represents a complex and accessible set of relational interactions between the person with dementia and their family members, situated in distinctive familial bonds. It is manifest through family interactions, whereby individuals with dementia display optimal engagement within family groups and can be positive (in-step) or negative (out-of-step). Family caregivers experience in-step interactions as connected, familiar, meaningful, and trusting whereby spontaneous adjustment to developments, opportunities for spontaneous fun, and feeling included and socially supported can occur. Alternatively, out-of-step interactions describe feelings of frustration and opposition. When out-of-step, shame, blame, guilt, and hypervigilance spill over to interactions in which individuals seek to control, conceal, reject, and escape. As such, RSE highlights distinctive familial bonds that offer security and comfort for those with dementia to spontaneously enjoy common ground and express differences within the family group. Although RSE can be positive in-step or negative out-of-step, it occurs more often within family groups during in-step interactions. Conclusions: This thesis can inform future research, theory, and aged care practice concerning relational and social engagement throughout the stages of dementia. Additionally, it highlights the complex interweave of psychosocial and relational distress experienced by these families as they navigate a western medicalised system of care. However, it also offers insight into the novice and convoluted engagement with a hierarchical model of care and its health care managers that presented the opportunity for the co-existence of traumatic distress and psychological growth. Central to the outcomes of this thesis and the evidenced negative and positive family communication patterns within the observed interactions, complex levels of awareness were seen to occur in the family members with dementia in this study. Interpreted as RSE, and developed throughout the thesis and publications, RSE offers a construct for future research hypotheses that offer opportunities to preserve and optimise retained awareness and interpersonal skills in those living with dementia. For the supporting family members, refusal of shame, rejection of stigma, and meaning brought to relational loss appeared to facilitate hope, and eventual positive redefinitions of relational and social intimacy as the stages of dementia progressed. Although theories of growth posit social support as a necessary condition for growth following adversity, when social support was lacking or even antagonistic for family caregivers, findings of this thesis would suggest that seeking RSE with a family member who has dementia stimulates meaning making for psychological growth. Generating renewed moral integrity and authenticity in family caregivers, RSE appeared to motivate their advocacy and positive change across other domains in time. As a qualitative thesis, though these findings cannot be generalised to wider populations, the experience of these participants has provided hypothetical considerations for the researcher to critique. These include positive psychology approaches for living well with dementia and its impacts, and the emergence of qualitative philosophies to inform dementia practice and research. Implications for clinical psychologists seeking to facilitate RSE psychological growth in families are discussed at every level of investigation and summarised in Chapter 9