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’ become an important credo in the present-day policy context.
Home-based care arrangements for people living with dementia are mostly organised by an informal carer, who assumes the role of the key care provider. 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. Furthermore and if necessary, informal carers are asked to plan and arrange a smooth transition to an institution and to continue caring for their relative with dementia in the new setting.
The main result of the preceding DZNE study VerAH-Dem (2010-2013) is a phase model that illustrates informal care trajectories: Creating and maintaining stability is identified to be a basic principle of informal carers during the whole trajectory.
Undeniably, stable home-based care arrangements for people living with dementia are a favoured outcome for dementia care dyads, in the context of programmatic agendas and for health and social care policy. Against this background, the term ‘stability’ is used as a winged word in the literature, but so far, a profound scientific discourse and empirical research on the complex phenomenon of stability is lacking. The project line StiV will contribute to address this research gap in a couple of associated subprojects.
The StiV project line starts to build theory on the complex phenomenon of stability. The emerging theory will guide subsequent empirical research, and will be validated and further advanced within this empirical phase. Central needs of dyadic care arrangements during the dementia care trajectory will be described and gaps in the dementia care continuum will be identified. The future goal of StiV is to support care structures and to develop stability promoting interventions, that enable people living with dementia and their families to create and maintain stable care arrangements and to live and care at the place of their choice as long as possible.
This will be realised within a couple of consecutive and harmonised subprojects. Currently, the project line StiV includes seven subprojects that use diverse research methodologies:
- StiV – Development of a working definition
- StiV – Theorisation by a meta-study
- StiV – Experiences and acting of informal carers
- StiV – Typologies of home-based care arrangements
- StiV – Stability at the end of life
- StiV – Stability in guidelines for professionals in Germany
- StiV – Development and validation of a screening-instrument (SoCA-Index)
The project line StiV researches the complex phenomenon of stability of home-based care arrangements for people living with dementia from theory to intervention and with a broad spectrum of methodologies. In this process, the results of the single subprojects will be continuously integrated and merged to create a sound knowledge base to inform and guide the subsequent steps of the research process. By doing so, we expect to create a sound and comprehensive understanding of stability, and we expect to set the stage for a future development of stability promoting care structures and care interventions. Our final goal is to contribute to enable people living with dementia and their families to live and care as long as possible at the place of their choice.