Supporting people with dementia in making decisions

How and where do I want to spend the end of my life? How can my (nursing) care be successful? How should I make provisions? We tend to push questions like these to the back of our minds. However, it is important to address them at an early stage - especially for people suffering from dementia. The new "DECIDE-2" research project at the University of Siegen, led by Professor Dr. Julia Haberstroh and Professor Dr. Marc Hassenzahl, aims to provide optimal support for people with dementia and their relatives in making important decisions. The project is being funded by the Federal Ministry of Research, Technology and Space (BMFTR) with 1.3 million euros.

"We want to strengthen the autonomy of people with dementia and people with mild cognitive impairments. At the same time, we want to relieve the burden on relatives in supporting those affected," says Janina Florack, project team member at the Chair of Psychological Aging Research at the University of Siegen. The project is carried out in close cooperation with the regional practice partners of the Dementia Guides Network Siegen-Wittgenstein, including the Alzheimer Society Siegen-Wittgenstein, the Caritas Association Siegen-Wittgenstein, the Siegerland health region and Siegen Hospital.

The current study of the DECIDE-2 project is based on the concept of dementia care management, which has already established itself in Siegen-Wittgenstein in recent years as valuable support for people with dementia and their relatives. Specially trained dementia guides visit those affected at home. During these home visits, the individual support needs are determined together: What is the respective living situation and what medical, care and psychosocial issues need to be clarified? A personalized care plan is then developed on this basis. The dementia guides also support those affected and their relatives in implementing this plan.

The project's dementia guides come from the fields of nursing and occupational therapy and are employed by the network partners. They have many years of practical experience in dealing with people with dementia, are professionally trained and have excellent networks in the region. The service has met with great approval from families. "Every home visit is different - we talk about very personal issues, listen, clarify and develop an individual care plan together with the family members," reports Stefanie Kremer, Dementia Guide at the Alzheimer Gesellschaft Siegen-Wittgenstein. "It's always impressive to see how our advice helps to stabilize the situation at home and provide targeted support to those affected and their confidants."

The project team is currently looking for people interested in taking part in the study: People with mild to moderate dementia or incipient memory disorders and their relatives can take part free of charge. Several home visits by the dementia guides are planned over a period of around six months. In the background, the entire process will be monitored and evaluated by scientists from the University of Siegen and the DZNE Greifswald. The project team is investigating the impact of the support provided by the dementia guides on the quality of life of those affected and their relatives.

Anyone wishing to take part in the current study should come from the Siegen-Wittgenstein district or neighboring regions. People who are only suspected of having dementia can also take part in the study - a diagnosis would then be carried out as part of the study by the memory outpatient clinic at Siegen Hospital or cooperating specialists in private practice. Recruitment has already started and will run until the end of 2026. If you are interested or have any questions, you can contact the project team at any time - by email at info.netzwerk@decm.de or by phone on 0271 740-5253.