DECIDE-2

Cooperating partners

Prof. Dr. Julia Haberstroh, Prof. Dr. Marc Hassenzahl, Prof. Dr. Simon Forstmeier, Dr. Kristian Kleinke, Prof. Dr. Jochen René Thyrian (Deutsches Zentrum für Neurodegenerative Erkrankungen), Stefanie Kremer (Alzheimer Gesellschaft Siegen-Wittgenstein e.V.), Charlotte Boes (Caritasverband in Südwestfalen), Anja Herder-Peyrounette (Gesundheitsregion Siegerland eG), PD. Dr. Ullrich (Klinikum Siegen)

Project description

Dementia is a terminal illness. It poses a high burden on proxies facing uncertainty with regard to end-of-life decisions for people who lose decision-making capacity. People with dementia are often no longer able to make autonomous end-of-life decisions. In addition, important issues such as treatment, care, and end-of-life preferences are frequently not discussed adequately with those involved beforehand. As a result, proxies often face uncertainty when making surrogate treatment decisions. The DECIDE-2 project therefore aims to provide supported decision-making for advance care planning for people with dementia and their proxies. The goal is to increase autonomy of people with dementia in making advance care and end-of-life decisions and to reduce proxy burden.

Supported advance care decision-making is integrated into the evidence-based Dementia Care Management (DeCM). DeCM is implemented by the project partners of the Dementia Care Network Siegen-Wittgenstein. The effectiveness of the intervention is evaluated in a controlled study. To ensure that the perspectives of people with dementia as well as their proxies are continuously taken into account, regular meetings are held with the local advisory board for people with dementia and the local advisory board for informal caregivers of people with dementia.

In addition, a complementary advance care decision support through a computer-based, personalized, conversational agent (i.e. chatbot) is being developed and evaluated by the Experience & Interaction Design research group at Faculty III. 

Both interventions, individually and in combination, are intended to enhance the autonomy of people with dementia in end-of-life decision-making and thereby help reduce the burden on proxies.

People with advanced dementia are often no longer capable of making self-determined decisions in the last phase of their lives, and issues such as treatment, care and death are not adequately discussed with those involved beforehand. This often leads to uncertainty for proxies when making proxy treatment decisions at the end of life. The DECIDE-2 project therefore aims to provide decision support for advance care planning for people with dementia and their proxies in order to strengthen the autonomy of those affected when making end-of-life decisions and to reduce the burden on proxies. This decision-making support is integrated into the concept of dementia care management (DeCM). The focus here is on empowering people to make self-determined decisions. The effectiveness of the decision support will also be tested in a controlled study. Furthermore, a supplementary decision support system using a technical dialog system (so-called chatbot) is being developed and also tested. Both measures, alone and integrated, should contribute to the autonomy of people with dementia when making decisions for the last phase of life and thus relieve the burden on proxies.

Among other purposes, a social media channel was established to disseminate the findings of DECIDE-2 and other projects within the PAR. The channel accompanies the work of the dementia care managers and publishes current research findings.

Instagram-account 

Facebook-account

Project participation

Study enrollment is open until the end of 2026. You can find the flyer with details about participation here.

Current progress of DECIDE-2

Both studies are currently collecting data, and study enrollment remains open until the end of 2026.