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Regional dementia care networks in Germany: changes in caregiver burden at one-year follow-up and associated factors

  • Franziska Laporte Uribe (a1), Johannes Gräske (a2) (a3), Susann Grill (a4), Steffen Heinrich (a1), Susanne Schäfer-Walkmann (a5), Jochen René Thyrian (a6) and Bernhard Holle (a1)...



Recently, regional dementia care networks (DCNs) have been established in Germany to provide timely support for persons with dementia (PwDs) and their families. There is a lack of research in this setting. This study was conducted to describe the burden experienced by informal caregivers over the course of one year when utilizing a DCN and the factors affecting potential changes in caregiver burden during that time.


The study was part of the DemNet-D project, a multi-center observational study of DCNs in Germany. Standardized questionnaires were administered during face-to-face interviews at baseline and at a one-year follow-up with PwDs and their informal caregivers who used a DCN. Based on qualitative data, four DCN governance types were identified and used in a multivariate analysis of burden categories.


A total of 389 PwD-informal caregiver dyads completed the follow-up assessment. At follow-up, the dyads reported significantly lower scores for burden in relation to practical care tasks, conflicts of need, and role conflicts. This change was associated with the PwD–caregiver relationship, the caregiver's gender and health status, and the PwD's socio-economic status. The governance structure of the DCNs was associated with change in one of the four burden categories.


Our data provide the first indications that different governance structures of DCNs seem to be similarly well suited to support network users and might contribute to reducing caregiver burden. However, further studies set in DCNs examining factors that mediate changes in burden are needed to draw strong conclusions regarding the effectiveness of DCNs. Gender differences and the PwD–caregiver relationship should be considered by DCN stakeholders when developing support structures.


Corresponding author

Correspondence should be addressed to: Franziska Laporte Uribe, German Center for Neurodegenerative Diseases e. V. (DZNE) site Witten, Postfach 62 50, Stockumer Str. 12, 58453 Witten, Germany. Phone: +49 23 02-926 226; Fax: +49 23 02-926 239. Email:


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