PreBeDem: Prevention and treatment against dementia (Subproject 1)

Background

Most people with dementia live at home and are cared for by family members. Remaining at home is often an important goal - for those affected and their informal carers as well as from a health policy perspective. While a great deal of data is available in Germany on the domestic situation of people in need of care in general, there is still little information on the specific care situation of people with dementia in the home care setting.

As part of the National Dementia Strategy, four individual sub-projects are being implemented under the umbrella of the study "With prevention and treatment against dementia" (PreBeDem), including sub-project 1 "Analysis of the situation of relatives of people with dementia in relation to the situation and stability of care arrangements". This sub-project is associated with the "Stability of Care Arrangements" (SoCA) project line at the DZNE Witten site.

Project Objective

A nationwide survey will collect data on the specific care situation of people with dementia and their informal carers in Germany in order to comprehensively describe care arrangements and identify factors that promote or hinder a stable care situation at home. This will create the basis for the needs-based further development of care structures and interventions for people with dementia and their families.

Approach/Methods

Sub-project 1 of the PreBeDem study is being implemented in collaboration with the Interventional Health Care Research working group at the DZNE Greifswald (René Thyrian), the Care Structures working group at the DZNE Witten (Bernhard Holle) and the German Alzheimer's Society. In autumn 2022, a survey instrument was developed in which, among other things, the central concepts of the SoCA-Dem theory on the stability of home-based care arrangements were operationalized. The questionnaire was sent out in paper form by the Alzheimer Society; an online survey ran in parallel. The data collection has been completed; data analysis is currently underway in cooperation with the DZNE sites in Greifswald and Witten.

Expected Results

The expected results will provide insights into the specific care situation of people living with dementia and their families in Germany. It will be possible to describe the socio-demographic data of people living with dementia and their informal carers, the type of dementia, the duration of care, the need for support and the use of services, as well as the relatives' perception regarding their burden, their resources and the stability of the care arrangements. The identification of factors that promote and inhibit a stable care situation can form the basis for recommendations for the further development of need-driven care structures and care interventions.