Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis

Abstract

Background Most persons with dementia live at home and want to stay there as long as possible. In most cases, informal carers such as spouses or children care for them. Together with other family members and professional carers, they form care arrangements to address the complex needs of persons with dementia. One major aim of informal carers is to keep the care arrangement stable. The middle-range theory of ‘stability of home-based care arrangements for people living with dementia’ (SoCA-Dem theory) offers a theory to understand what constitutes and influences the stability of home-based care arrangements. Based on this theory, the aim of this study was to (1) uncover the underlying structures of differences and commonalities of home-based care arrangements for persons living with dementia, (2) construct types of these care arrangements, and (3) compare these types with regard to their stability. Method This is a secondary analysis of data from a convenience sample of n = 320 care arrangements for persons with dementia obtained in the observational DemNet-D study. Data were analysed using multiple correspondence analysis and hierarchical cluster analysis. Sociodemographic data and variables related to the structure of the care arrangement (D-IVA), burden of the informal carer (BICS-D), dementia severity (FAST), and quality of life of the person with dementia (QOL-AD) were included. Results The multiple correspondence analysis identified 27 axes that explained the entire variance between all care arrangements. The two axes ‘dementia and care trajectory’ and ‘structure of the dyadic relationship’ best distinguished care arrangements from each other and together explained 27.10% of the variance. The subsequent cluster analysis identified four types of care arrangements. Two types included spouse-centred care arrangements, and two types included child-centred care arrangements at different phases of the dementia and care trajectory. The types differ with regard to their stability. Conclusion The results highlight the heterogeneity and commonality of care arrangements for persons living with dementia. They contribute to a better understanding of informal dementia home care. Furthermore, the results can guide the development of tailored support for persons living with dementia and their caring families.

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

“…Assuming the carer role was a matter of course for all spouses, whereas children tended to question their role quite often. The latest research illustrated that the kinship relation (carer from the same versus carer from a younger generation) is one of the most important dimensions in distinguishing between different types of home-based care arrangements [ 45 , 64 ], and critics have noted that there is an underrepresentation of research on dyads in addition to intimate relationships [ 65 ]. Indeed, numerous publications have not differentiated between the generational affiliation of informal carers [ 55 , 66 ] or have focused only on spousal relationships [ 3 , 63 ].…”

“…Following the theory-building meta-study, we now use the SoCA-Dem theory in empirical studies with a broad spectrum of methodologies. For example, a quantitative study that developed a typology of care arrangements has been recently published [ 45 ]. This study is the first qualitative study to utilise the SoCA-Dem theory as its theoretical basis.…”