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. 2017 Apr;50(3):210-218.
doi: 10.1007/s00391-015-0990-0. Epub 2015 Dec 22.

[Stability of home based care arrangements for people with dementia : Development of a consensus definition of stability using expert focus groups]

[Article in German]
Milena von Kutzleben  1 , Kerstin Köhler  2   3 , Jan Dreyer  2   3 , Bernhard Holle  2   3 , Martina Roes  2   3
Affiliations

[Stability of home based care arrangements for people with dementia : Development of a consensus definition of stability using expert focus groups]

[Article in German]
Milena von Kutzleben et al. Z Gerontol Geriatr. 2017 Apr.

Abstract

Background: The majority of people with dementia in Germany live at home. These informal care arrangements, which are mostly coordinated by informal carers, are the backbone of home-based dementia care. Creating and maintaining stability is an underlying theme in informal care; however, a definition of the complex phenomenon of 'stability' in this context is still lacking.

Aim: The aim was to develop a working definition of stability of home-based care arrangements for people with dementia, which can be applied in current and future research projects at the German Center for Neurodegenerative Diseases in Witten (DZNE Witten) and others.

Material and methods: Ensuing from prior research a preliminary version of the definition was formulated. This definition was discussed in a focus group of scientific experts with expertise in dementia research and care (n = 8). After data analysis using content analysis, the definition was revised during a scientific colloquium (n = 18) and a consensus was finally reached.

Results: There were four major themes which were considered by the experts as being relevant for the definition of stability: (1) creating and maintaining stability as a continuous adaptation process, (2) a qualitative component of stability, (3) persons with dementia and informal carers as pivotal players and (4) transitions to residential care.

Conclusion: The working definition introduced in this article reflects the authors' understanding of the phenomenon of stability of home-based care arrangements for people with dementia. In times of increasing need for evidence-based interventions it is necessary to develop elaborated definitions of complex phenomena in order to be able to systematically evaluate the efficacy of interventions on the basis of a common understanding.

Keywords: Adaptation; Care trajectory; Concept formation; Family caregivers; Institutionalization.

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