PreBeDem: Prevention and treatment against dementia (Subproject 1)

Background

Most people with dementia live at home and are cared for by family members. Staying in one’s own home is a key goal – both for those affected and their families, as well as from a social and health policy perspective. While extensive data are available on the home situation of people in need of care in Germany, there is still limited knowledge about the specific care situation of people living with dementia. Against this background, the study “With prevention and treatment against dementia" (PreBeDem)” was conducted as part of the National Dementia Strategy. Subproject 1 – “Analysis of the situation of relatives of people with dementia in relation to the situation and stability of care arrangements” – is affiliated with the project line Stability of Care Arrangements (SoCA) at the DZNE site in Witten.

Project Aims

The aim of the project is to systematically assess the home-based care situation of people living with dementia and their informal carers in Germany through a nationwide survey. The collected data are used to describe care arrangements, identify factors that promote or challenge their stability, and to test the operationalization of stability as an outcome.

Method

The project was carried out in cooperation with the Working Group on Interventional Health Services Research at DZNE Greifswald, the Working Group on Care Structures at DZNE Witten, and the German Alzheimer’s Association. Based on the SoCA-Dem Theory, a survey instrument was developed to capture key concepts related to the stability of home-based care arrangements. The survey was conducted nationwide in both paper-based and online formats. In total, around 900 families with a person living with dementia participated. Data analyses are currently being carried out collaboratively by the DZNE sites in Greifswald and Witten.

Expected Outcomes

The results provide differentiated insights into the home-based care situation of people living with dementia and their families in Germany. Expected findings include information on sociodemographic characteristics, type and duration of dementia, support and care needs, use of care services, as well as caregiver burden, resources, and the perceived stability of care arrangements from the relatives’ perspective. In addition, the project lays the foundation for developing an instrument to measure stability as an outcome.

Publications

Köhler, K., Rademacher, A., Thyrian, J. R., Holle, B. (2025). Informelle Versorgungsarrangements bei Demenz – Perspektiven von Partner*innen und Kindern im Vergleich: Ergebnisse der Survey-Studie PreBeDem. Deutscher Kongress für Versorgungsforschung (DKVF). Hamburg.

Köhler, K., Rademacher, A., Thyrian, J. R., Holle, B. (2024). Häusliche Versorgungarrangements bei Demenz aus der Perspektive von Angehörigen – aktuelle Daten aus der Survey-Studie PreBeDem. Gemeinsames Jahreskongress DGGG & DGG: Altern ohne Grenzen. Kassel.