Understanding how dementia caregivers' interactions with their social environment affect their pre-death grief experiences : a causal loop diagram

Abstract

Background: Pre-death grief is an inexorable phenomenon experienced by dementia caregivers. However, current research tends to overfocus on caregivers’ intrapsychic and caregiver-recipient relational grief processes. The role of the social environment and how caregivers interact with it in relation to their grief is overlooked. Objectives: The thesis has two objectives. The first is to examine how the interactions between dementia caregivers and their social environment aggravate and attenuate caregivers’ pre-death grief. The second is to discover leverages in the interactions that could significantly affect caregivers’ pre-death grief. Methods: The causal loop diagram (CLD), a systems thinking tool, was used to visualise and depict the systems of interactions between caregivers and their social environment. Based on conversations with 33 caregivers in Singapore, an enhanced purposive text analysis method was used to construct the CLD. The caregivers were recruited using purposeful, convenience, and snowball sampling methods. A maximum variation strategy was deployed to capture the broadest range of experiences possible. Elements in the CLD were initially constructed using a thematic analysis approach embedded within the purposive text analysis method. The CLD was analysed to identify leverages, using Donella Meadows’ 12 places of intervention as a guiding framework. Eigenvector centrality values were calculated to rank the influence level of the elements on the CLD as leverage. Findings: Thirty-two themes about caregivers’ grief were generated. After further analysis, 38 elements for the CLD were determined. The resulting CLD consisted of 128 directed connections and 37,854 feedback loops. The analysis of eight subsystems of interactions provided refreshing and sometimes paradoxical insights. Based on eigenvector centrality values, ten elements are identified as highly influential leverages. Discussions: Based on the analysis, three key findings were developed. The findings are expressed as three recognitions about caregivers’ grief arising from their interactions with the social environment. The first is recognition of the complex interactional dynamics. The second is recognition of the deep influence of family (including the person with dementia and domestic helper) and fellow caregivers on caregivers’ grief. The third is recognition of caregivers’ agency amidst grieving. Significances: By studying the interactions, this thesis expands and deepens the conceptual understanding of pre-death grief of caregivers. It also provides a novel proof-of-concept methodology for studying other thanatological topics. The thesis highlights a strong need to promote systemic practice approaches in working with caregivers to live with pre-death grief. The thesis also inspires the development of a new concept called compassion capital for future research.