Development and replication of a typology of informal dementia care dyads to guide the design of tailored support for informal caregivers. An exploratory study based on cross-sectional analyses of dementia care network users in Germany and the Netherlands and international evidence

Abstract

The number of people living with dementia continues to increase, and many of them wish to live at home for as long as possible. Informal caregivers are at the centre of the home-based care arrangements. However, they're usually under a lot of pressure, and it has been proven that this impacts their health negatively. Many studies highlight the importance of providing psychosocial support services to caregivers in dementia care dyads. However, it is widely agreed that current support structures are still not sufficiently tailored to the different needs of informal carers in various dyadic constellations. To improve the effectiveness of support for informal caregivers, it is crucial to better tailor them to specific dyadic constellations in home-based dementia care. The overall aim is the identification of typical dyadic relationship constellations in home-based dementia care settings. A further goal is the analysis of similarities and differences regarding relevant health-care related psychosocial outcomes, with a special focus on informal caregivers as individuals in dementia care dyads. Therefore, three single papers were published, that 1. synthesises both effectiveness and subgroup-orientation of psychosocial interventions promoting mental health of informal caregivers, 2. presents a subgroup-typology and related health care outcomes of informal caregivers within dementia care dyads, using a latent class analysis (LCA) based on data from the German DemNet-D study, and 3. tests and controls this subgroup-typology within a LCA replication study, using data from the Dutch COMPAS study. Furthermore, the results are reflected against the underlying concepts of psychosocial health, dyadic perspective and subgroup-orientation. The results indicate that there is still a shortage of studies concentrating on targeting interventions for specific subgroups of informal caregivers in home-based dementia care dyads. The situation is even more evident when searching for multidimensional approaches to identify subgroups. This could be a reason why previous interventions have only been modestly effective. Furthermore, the analyses were able to show that a model-based multidimensional identification of typical dyadic subgroups in home-based dementia care is feasible and provides entry points for providing tailored health support. Nevertheless, replication of those initial results was limited in some aspects and only partially successful. However, future research projects should address this issue and take further steps towards the harmonisation of core indicator sets across studies and countries. Overall, this thesis contributes to the understanding of how to identify relevant subgroups of dementia care dyads in home-based setting, using quantitative data in a model-based and multidimensional approach. It also identifies challenges for quantitative projects, such as the difficulty of replicating initial findings with structurally similar but different populations. This thesis might be a valuable input for further debates on how to improve the effectiveness of psychosocial interventions for informal dementia caregivers through tailored support.