SoCA - Stability of care arrangements for people living with dementia

Background

Most people with dementia live at home; and it is their express wish to stay in their familiar environment for as long as possible. Likewise, the maintenance of sustainable home-based care arrangements is an imperative for social security and health care systems in need to deal diligent with limited financial resources. Informal carers are central players in the context of home-based dementia care. They usually assume the role of the key care providers and strive to create and maintain a stable care situation. Family carers shoulder a vast amount of hands-on care, serve as gatekeepers at the interface between informal and formal care, and organize different support services. As a rule, it is they, who negotiate a need-driven care mix over the entire care trajectory in order to maintain home-based care for as long as possible. For informal carers, the creation of a stable care situation is a motive on which they base their caring actions.

Project Aims

“Stability of home-based care arrangements for people living with dementia” (SoCA) is a long-term project line of the Care Structures working group at the DZNE Witten site. The project line researches the complex phenomenon of stability in numerous sub-projects and continuously integrates the research results into a growing body of knowledge. The long-term goal of the project line SoCA is to set the stage for a future development of stability promoting care structures and care interventions.

Methods

The SoCA project line uses a broad range of methods aiming at a better understanding of the complex phenomenon of stability and aiming at an identification of factors that influence stability. First, the phenomenon of stability has been defined theoretically in several basic studies: a working definition and a middle-range theory (SoCA-Dem theory) are key results of this first phase of the project line. Since then, the SoCA-Dem theory has been used to guide research in empirical studies - with both qualitative and quantitative methodological approaches - and serves as a reflection framework in process evaluations. We also strive to operationalize the phenomenon of stability in order to make it measurable as an outcome.

Expected Results

The SoCA project line develops a well-founded body of knowledge on the complex phenomenon of stability. In the long term, the research will help to identify care structures and develop care interventions that promote the stability of home-based care and thus enable people with dementia and their families to live and care at the place of their choice as long as possible.