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Hearing the Voice of People with Dementia

Scientists from the DZNE Witten start a model study to foster the self-determination of people with dementia

A model study with the title "Selbstwahrnehmung und Intervention (SEIN)" (self-perception and intervention), led by Associate Professor Dr. Birgit Panke-Kochinke and Prof. Dr. Sabine Bartholomeyczik, is being launched at the German Center for Neurodegenerative Diseases (DZNE). A central goal of the study is to discover how the self-determination of people with dementia in the early stages of their illness can be fostered in an individual, precisely tailored, and thus resource-oriented manner. To address this issue, the study compares people with early-stage dementia who are living at home and are engaged in support groups with non-demented people suffering from multiple sclerosis in similar settings. The objective is to investigate how their dealing with obstacles in everyday life has changed through the disease and how important their engagement in support groups is. Choosing people with multiple sclerosis as a reference group offers the opportunity to investigate what distinguishes the health care needs of dementia patients from those of people with other chronic diseases.

"To address the desires and needs of people with dementia, we find it is important to speak to them directly, listen to them, and try to capture from an individual perspective what resources and possibilities of support and guidance are appropriate in different phases of their lives," explains Panke-Kochinke. In the study, people with early dementia and people with multiple sclerosis are therefore asked in open, narrative interviews during group discussions how they deal with their disease. Panke-Kochinke generally assumes that the interviewees can talk about themselves and their experiences and are able to define their situations in the research process in a self-determined manner. In both groups, however, it is possible that in some cases the disease manifests itself in language problems. It is so far unclear how to deal with these problems in a research setting. It is thus another key objective of the research project to develop ideal methodological standards.

Following the model study, a longitudinal study of people with dementia is planned to gain a better understanding of how the requirements and needs change during the course of the disease.

PD Dr. Birgit Panke-Kochinke German Center for Neurodegenerative Diseases (DZNE) Site Witten Postfach 6250 Stockumer Straße 12 58453 Witten Germany Tel +049 2302 926-227 Email birgit.panke-kochinke@dzne.de

Dr. Katrin Weigmann German Center for Neurodegenerative Diseases (DZNE) Press- and Public Relations Holbeinstr. 13-15 53175 Bonn Germany Tel: +49 228 43302 /263 Mobil: +49 173 - 5471350 Email: katrin.weigmann@dzne.de

idw :: 22.07.2011