Most people with dementia live at home and are cared for by family members. It is their express wish to stay in their familiar environment; and the majority of informal carers also wish to keep the person with dementia at home 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. In efforts to align the priorities of people living with dementia, their informal carers, health care providers and policymakers, programmatic agendas like ‘ageing in place’ became an important credo in the present-day policy context.
Home-based care arrangements for people living with dementia are mostly organised by informal carers, who assume the role of the key care providers, and who strive to create and maintain a stable care situation at home. Informal carers shoulder a vast amount of hands-on care, serve as gatekeepers at the interface between informal and formal care, and manage the different support services. In most cases, informal carers adapt the care mix to the ever-changing needs throughout the dementia care trajectory to keep the system running.
Using a broad spectrum of methodologies, the project line SoCA researches the complex phenomenon of stability of home-based care arrangements for people living with dementia from theory, to empirical research, to intervention. Initially, a middle-range theory was developed which is now used as the theoretical frame for current empirical studies. These studies deepen the understanding of the concepts and influencing factors that are central for the creation and maintenance of stability; the theory will be validated and further developed. In addition, the researchers strive to operationalise the phenomenon of stability and to make it measurable as a meaningful outcome. Results of the single subprojects will be continuously integrated to create a sound understanding of stability. 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 that enable people with dementia and their families to live and care at the place of their choice as long as possible.
- SoCA – Development of a working definition
- SoCA – Theory building meta-study
- SoCA – Experiences and acting of informal carers
- SoCA – Typologies of home-based care arrangements
- SoCA – End-of-life care
- SoCA – Analysis of guidelines