The care and support of people with neurodegenerative diseases is a great challenge spread across several levels: Economies are confronted with steadily rising costs for a growing number of patients, while at the same time millions of people every day are faced with the task of providing nursing and care for their closest relatives at home. This is where the research of the DZNE comes in: Better care concepts are necessary to relieve the burden on health systems and to be able to offer people the best possible care - for the simple reason that there are still no effective therapies that can combat the underlying roots of the diseases.
In the field of health care research, the DZNE is working on new ways of training nursing and medical staff, of reviewing structures and providers in the health care system, and of networking them as effectively as possible. Efforts also include preserving the patients’ right to choose and ensuring their social integration as far as possible. All this is scientifically sound and based on findings from the everyday experience of dealing with people suffering from illnesses.
People with dementia sometimes show mood swings and behaviors that can be very distressing not only for themselves, but also for others. Such behaviors include aimless wandering, aggressiveness, yelling, and apathy. At the DZNE, we investigate such behavior and how relatives and caregivers can have a positive influence on it. In this context, we explore ways of nonverbal communication such as facial expressions and gestures, which can make it easier to communicate if a patient’s ability to speak is limited.
Since most people with dementia live at home, their situation is a particular concern of ours. These patients are mainly cared for by relatives, whose efforts also come with a great deal of physical and emotional strain. Qualified personnel and a suitable infrastructure are what is needed to provide the best possible quality of life for all concerned. The need is illustrated by the example of the federal state of Mecklenburg-West Pomerania, whose population is rapidly aging. This is why the DZNE has run a pilot project in this state involving the services of specially trained experts: These “dementia care managers” visit people with dementia at home and systematically record their needs, using this data as the basis for optimizing the care of these patients in close coordination with their primary care physicians. Scientific studies have shown that this concept of outpatient care improved the living situation of people with dementia and of their relatives. The DZNE used these findings as a foundation for developing a continuing education curriculum for health care professionals. This curriculum, which is currently being tested in a pilot project, is expected to pave the way for including “dementia care management” in standard care.
The overarching goal to be achieved is a satisfactory quality of life at all stages of this progressively worsening disease. Reaching this goal involves considering and examining not only direct patient-care measures and medical procedures, but also the structures and providers of the health care system itself, including their roles and networks. For example, the results of a DZNE study on dementia support networks have been incorporated into the design of the Second Care Strengthening Act (PSG II). As a result, regionally organized care structures can receive financial support – and people with dementia and their relatives benefit from this.
For an overview of our numerous current projects please click here.