Milena von Kutzleben1, Kerstin Köhler2,3, Jan Dreyer2,3, Bernhard Holle2,3, Martina Roes2,3. 1. Arbeitsgruppe Versorgungsstrukturen, Deutsches Zentrum für Neurodegenerative Erkrankungen e. V. (DZNE), Stockumer Str. 12, 58453, Witten, Deutschland. Milena.vonKutzleben@dzne.de. 2. Arbeitsgruppe Versorgungsstrukturen, Deutsches Zentrum für Neurodegenerative Erkrankungen e. V. (DZNE), Stockumer Str. 12, 58453, Witten, Deutschland. 3. Fakultät für Gesundheit, Department für Pflegewissenschaft, Universität Witten-Herdecke, Witten, Deutschland.
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.
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.
Entities:
Keywords:
Adaptation; Care trajectory; Concept formation; Family caregivers; Institutionalization
Authors: JoAnn T Tschanz; Kathleen Piercy; Chris D Corcoran; Elizabeth Fauth; Maria C Norton; Peter V Rabins; Brian T Tschanz; M Scott Deberard; Christine Snyder; Courtney Smith; Lester Lee; Constantine G Lyketsos Journal: Am J Geriatr Psychiatry Date: 2013-01-02 Impact factor: 4.105
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