Dyadic relationship, carer role, and resources: a theory-driven thematic analysis of interviews with informal carers focusing on the stability of home-based care arrangements for people living with dementia

Abstract

Abstract Background Most people with dementia live at home and are supported by informal carers. During the care trajectory, the creation of a stable care situation is a guiding principle of informal carers, who often manage complex care arrangements. A recently developed theory – ‘Stability of home-based care arrangements for people living with dementia' (SoCA-Dem) – conceptualises how such care arrangements develop over time, and it highlights the relevance of the dyadic relationship, carer role, and resources with regard to the continuation of home-based care throughout the course of dementia. To further explore these three concepts, and to provide feedback for a further refinement of SoCA-Dem theory, this study aims to gain a deeper understanding of (1) how informal carers perceive their dyadic relationship, their carer role, and the resources of the care arrangement, and (2) how these concepts are interrelated. Methods This study was a secondary data analysis of n = 11 problem-centred interviews. Data were interpreted by a thematic qualitative text analysis. Results The findings distinguished subthemes within the concepts and uncovered their interrelations. The kinship relation, living situation and character of the dyadic relationship shaped informal carers’ self-conception of the carer role. This influenced the integration of resources into the care arrangement. Conversely, the quantity and quality of informal and formal support resulted in a feeling of relief or overload in the carer role, that shaped the informal carers’ way of living their dyadic relationship. The respective forming of the concepts had a significant impact with regard to the perceived stability or instability of the care situation in the examined care arrangements. Conclusions This study provided valuable evidence for future research alignment and targeted refinement of the SoCA-Dem theory. Scholars should further explore the specifics of spousal versus parent–child-dyads to better understand the dyads' diverse strategies in the creation of stable home-based care arrangements. Furthermore, future research should focus on the complex dynamics of dyads, family networks, and service providers, and all actors’ perspectives should be integrated in SoCA-Dem theory. Based on this growing knowledge base, innovative care interventions and structures should be developed to support people with dementia and their informal carers in better living and caring in the place of their choice.