Scientific project leaders:
Dr. Milena von Kutzleben
Prof. Dr. Mark Schweda

Operative project leader (please contact if you have questions about the project):
Dr. Milena von Kutzleben

Duration:
since 01.09.2020

Funding institution:
Own resources

Project description:
The majority of people with dementia in Germany lives in private households cared for by informal caregivers. However, the scope of benefits provided by the statutory long-term care insurance is hardly sufficient to cover the comprehensive care needs of people with dementia. The resulting gap in the long-term care system is compensated by informal caregivers. One answer to relief families from this burden and to avoid institutionalization are migrant live-in carers, mostly from Eastern European countries.

Home-based care arrangements that rely on migrant live-in care have become an important pillar of the German long-term care system. However, most of these arrangements are located in a legal grey area and legal frameworks and regulations are hard to comprehend for families in the need for support. Families are basically left alone to find a live-in carer and to organize an arrangement that fulfills their personal needs and expectations. These circumstances lead to several practical problems and moral conflicts for all parties involved. The COVID-19 pandemic has made this situation even worse.

Online forums and groups in social networks are a virtual space in which family carers use the opportunity to exchange information and experiences with other people who employ a live-in carer. The joint project of the divisions for Organizational Health Services Research and Ethics in Medicine focuses on perspectives and argumentation patterns of families of a person with dementia who have engaged a live-in help or who are considering this as an option. With an approach that combines health services research with an ethical perspective and analysis, the project examines topics, problem areas and moral conflicts in migrant live-in care for people with dementia by analyzing the statements of family carers.

The research project chooses an exploratory-qualitative approach. In the first step, content from online forums and groups in social networks, in which the topic of live-in care is discussed, is analyzed. In the second step, online group discussions on live-in care in the context of dementia are conducted with family carers.

The project serves as a pre-study for a longitudinal research project, which examines care arrangements in their constellation and dynamics as a triad in the microsetting domesticity.

Publications and presentations:

Gerhards, S. (2020): Moralische Probleme des Einsatzes osteuropäischer live-in-Hilfen in der häuslichen Versorgung von Menschen mit Demenz – Qualitative Inhaltsanalyse und ethische Untersuchung von Angehörigenperspektiven in Onlineforen. Große Forschungsarbeit im Rahmen des Longitudinalen Forschungscurriculums im Modellstudiengang Medizin der Carl von Ossietzky Universität Oldenburg

von Kutzleben, M.; Weßel, M.; Stange, L.; Schweda, M.; Ansmann, L. (2020): Osteuropäische live-in Hilfen in der häuslichen Versorgung bei Demenz. Eine Untersuchung der Triade Person mit Demenz – live-in Hilfe – Angehörige (TriaDe). 20. Deutscher Kongress für Versorgungsforschung. Online-Kongress am 01.10.2020.

Gerhards, S.; von Kutzleben, M.; Schweda, M. (2020): Moralische Probleme des Einsatzes osteuropäischer live-in-Hilfen in der häuslichen Versorgung von Menschen mit Demenz - Qualitative Inhaltsanalyse und ethische Untersuchung von Angehörigenperspektiven in Onlineforen. 20. Deutscher Kongress für Versorgungsforschung. Online-Kongress am 01.10.2020.

von Kutzleben, M.; Weßel, M.; Gerhards, S. M.;  Ansmann, L.; Schweda, M. (2021): Entangled Vulnerabilities – a Triadic Perspective on People with Dementia, Eastern European Live-in Carers and Family Carers. Vortrag auf der internationalen Konferenz‚ Decent Care Work? Transnational Home Care Arrangements’.  Online-Kongress, 07.04.2021

von Kutzleben, M.; Weßel, M.; Schweda, M.; Ansmann, L. (2021): Problemfelder und moralische Konflikte in der häuslichen Versorgung von Menschen mit Demenz durch osteuropäische Live-in Hilfen – eine Analyse von Onlineinhalten und Online-Gruppendiskussionen. 20. Deutscher Kongress für Versorgungsforschung. Deutsches Netzwerk Versorgungsforschung e.V.. Online-Kongress, 06-08.10.2021

Gerhards, S.; von Kutzleben, M., Schweda, M. (2021): Moralische Probleme der live-in Versorgung im Spiegel der enttäuschten Erwartungen von Angehörigen: ein ethische Analyse von Beiträgen aus Onlineforen. Jahrestagung der Akademie für Ethik in der Medizin. Akademie für Ethik in der Medizin 2021. Online-Kongress, 22.-25.09.2021