Scientific project leader:
Dr Milena von Kutzleben
Prof Dr Jo Reichertz
Prof Dr Mark Schweda

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

Scientific collaboration:
Nadine Giesbrecht, M.A.
Matthias Hauer, M.A.
Dr Anna-Eva Nebowsky

Funding period:
2023-2026

Project funding:
German Research Foundation (DFG) - project number 509885213 (https://gepris.dfg.de/gepris/projekt/509885213)

Project description:
The majority of people living with dementia in Germany live in private households. The relatives who care for them quickly reach the limits of their capacity and are often overwhelmed by the sheer volume of tasks. Carers who live in the household of the person requiring care for a limited period of time, so-called live-in helpers, who usually come from Eastern European countries, therefore help with the care. There has been little empirical research into how those involved organise their everyday life together and whether the model is a good form of care for people with dementia.

The DFG project launched in April 2023, in which care researchers, sociologists and ethicists from the University of Oldenburg are working together with communication scientists from the Institute of Cultural Studies in Essen, aims to shed light on this.

The aim of the study is to gain knowledge about the different negotiation processes for the organisation of the arrangement and the care responsibilities in the triad of person with dementia - live-in help - relatives. We are also interested in how the negotiated and everyday practised form of co-operation fits in with the participants' ideas of what good care should look like in their opinion. The aim is to reconstruct the patterns of interpretation, concepts of care, ideas about dementia and moral perspectives on which these care arrangements are based, as well as how any conflicts in this regard are dealt with.

To this end, we will work in an ethnographic design with participatory, language-based and visual methods.

Call for participation in the studye:

To conduct the study, we are looking for families in which a person with dementia is cared for by a live-in carer, i.e. a person living in the household. We would like to accompany this care arrangement as part of a participant observation over the course of a year on individual days in everyday life. We would like to participate in your everyday life in close consultation with all those involved in the care. Together with you, we will develop and implement procedures that are appropriate to you and your situation. These may include, for example, conversations, photos or notes. The data collected will only be used for research purposes in accordance with data protection regulations, treated confidentially and anonymised before publication. You have the option of cancelling your participation in the study at any time without giving reasons. If you withdraw your consent, all data already collected will be deleted.

If you are interested in participating in the study and have any questions, please contact Dr Milena von Kutzleben by email: