SoCA - Stability of care arrangements for people living with dementia

Background

Most people with dementia live at home, and it is their explicit wish to stay in their familiar environment for as long as possible. At the same time, enabling people to remain in their own homes is an important policy goal, as it helps to sustainably relieve social and healthcare systems. Informal carers – mostly family members – play a central role in home-based dementia care: they provide the largest share of actual care and are usually also responsible for organizing the overall care arrangement. In doing so, they interact continuously with the person living with dementia as well as with other informal helpers and professional care providers. Home-based care therefore emerges within dynamic networks that are jointly shaped by all of the actors involved.

Aims of the project line

The project line “Stability of Care Arrangements for People Living with Dementia” (SoCA) is a long-term research initiative of the research group Care Structures at the DZNE site in Witten. Through numerous sub-projects, SoCA investigates the complex phenomenon of stability in home-based care arrangements and continuously integrates the findings into a growing body of knowledge. The long-term goal is to identify care structures and develop interventions that support people living with dementia and their families in establishing and maintaining stable care arrangements over time.

Methods

The SoCA project line employs a broad range of methods to better understand stability of home-based care arrangements and to identify key influencing factors. Initial foundational studies provided a theoretical framework for the phenomenon. Key outcomes include a working definition and a middle-range theory known as the SoCA-Dem Theory. This theory has since served as the guiding framework for empirical studies using both qualitative and quantitative approaches, and it also functions as a reflective framework in process evaluations. In parallel, efforts are underway to operationalize stability as a measurable outcome and to develop interventions that specifically contribute to stabilizing home-based care arrangements.

Expected Outcomes

Within the SoCA project line, a well-founded body of knowledge is being developed on the complex phenomenon of stability of home-based care arrangements for people living with dementia. In the long term, our research helps strengthen home-based care and enables people with dementia and their families to continue living at home in ways that reflect their individual needs and preferences.