PreBeDem: Prevention and treatment against dementia (Subproject 1)

Most people with dementia live at home and are cared for by family members. Remaining in one's own home as long as possible is an important goal - on the one hand for the people affected by dementia, on the other hand from a health policy point of view. While there is a lot of data with regard to people in need of care in general, in Germany there is only little information on the specific care situation of people living with dementia and their families.

Under the umbrella of the project ‘With prevention and treatment against dementia’ (PreBeDem), four subprojects are being implemented as part of the national dementia strategy of Germany:

1. Analysis of the situation of informal carers of people living with dementia with regard to the situation and stability of care arrangements
2. Improving the transfer of research results into practice via an online study and research platform
3. Assessment of biomarkers to determine prognostic value for short clinical trials
4. Development of a concept for the implementation of participatory research strategies within the TaNDem network

Subproject 1 is done in cooperation with the research group Interventional Health Care Research at the DZNE Greifswald (René Thyrian), the research group Care Structures at the DZNE Witten (Bernhard Holle) and the German Alzheimer's Society (DAlzG). The aim is to use a standardised survey to collect data on the specific care situation of people with dementia and their families in Germany in order to comprehensively describe dementia care arrangements and to identify promoting and challenging factors with regard to stability. This creates a basis for a targeted future development of innovative care structures and care interventions for people with dementia and their families. In autumn 2022, the questionnaire was developed. Among other aspects, the central concepts of the SoCA-Dem theory were operationalized. The questionnaire was sent out in paper form by the Alzheimer's Society (DALzG); an online survey ran in parallel. Data collection is complete. Currently, data is analyzed in cooperation with the DZNE sites Greifswald and Witten.