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Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis

BACKGROUND: Most persons with dementia live at home and want to stay there as long as possible. In most cases, informal carers such as spouses or children care for them. Together with other family members and professional carers, they form care arrangements to address the complex needs of persons wi...

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Autores principales: Dreyer, Jan, Bergmann, Johannes Michael, Köhler, Kerstin, Hochgraeber, Iris, Pinkert, Christiane, Roes, Martina, Thyrian, Jochen René, Wiegelmann, Henrik, Holle, Bernhard
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9438141/
https://www.ncbi.nlm.nih.gov/pubmed/36050645
http://dx.doi.org/10.1186/s12877-022-03310-1
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author Dreyer, Jan
Bergmann, Johannes Michael
Köhler, Kerstin
Hochgraeber, Iris
Pinkert, Christiane
Roes, Martina
Thyrian, Jochen René
Wiegelmann, Henrik
Holle, Bernhard
author_facet Dreyer, Jan
Bergmann, Johannes Michael
Köhler, Kerstin
Hochgraeber, Iris
Pinkert, Christiane
Roes, Martina
Thyrian, Jochen René
Wiegelmann, Henrik
Holle, Bernhard
author_sort Dreyer, Jan
collection PubMed
description BACKGROUND: Most persons with dementia live at home and want to stay there as long as possible. In most cases, informal carers such as spouses or children care for them. Together with other family members and professional carers, they form care arrangements to address the complex needs of persons with dementia. One major aim of informal carers is to keep the care arrangement stable. The middle-range theory of ‘stability of home-based care arrangements for people living with dementia’ (SoCA-Dem theory) offers a theory to understand what constitutes and influences the stability of home-based care arrangements. Based on this theory, the aim of this study was to (1) uncover the underlying structures of differences and commonalities of home-based care arrangements for persons living with dementia, (2) construct types of these care arrangements, and (3) compare these types with regard to their stability. METHOD: This is a secondary analysis of data from a convenience sample of n = 320 care arrangements for persons with dementia obtained in the observational DemNet-D study. Data were analysed using multiple correspondence analysis and hierarchical cluster analysis. Sociodemographic data and variables related to the structure of the care arrangement (D-IVA), burden of the informal carer (BICS-D), dementia severity (FAST), and quality of life of the person with dementia (QOL-AD) were included. RESULTS: The multiple correspondence analysis identified 27 axes that explained the entire variance between all care arrangements. The two axes ‘dementia and care trajectory’ and ‘structure of the dyadic relationship’ best distinguished care arrangements from each other and together explained 27.10% of the variance. The subsequent cluster analysis identified four types of care arrangements. Two types included spouse-centred care arrangements, and two types included child-centred care arrangements at different phases of the dementia and care trajectory. The types differ with regard to their stability. CONCLUSION: The results highlight the heterogeneity and commonality of care arrangements for persons living with dementia. They contribute to a better understanding of informal dementia home care. Furthermore, the results can guide the development of tailored support for persons living with dementia and their caring families. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-022-03310-1.
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spelling pubmed-94381412022-09-03 Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis Dreyer, Jan Bergmann, Johannes Michael Köhler, Kerstin Hochgraeber, Iris Pinkert, Christiane Roes, Martina Thyrian, Jochen René Wiegelmann, Henrik Holle, Bernhard BMC Geriatr Research BACKGROUND: Most persons with dementia live at home and want to stay there as long as possible. In most cases, informal carers such as spouses or children care for them. Together with other family members and professional carers, they form care arrangements to address the complex needs of persons with dementia. One major aim of informal carers is to keep the care arrangement stable. The middle-range theory of ‘stability of home-based care arrangements for people living with dementia’ (SoCA-Dem theory) offers a theory to understand what constitutes and influences the stability of home-based care arrangements. Based on this theory, the aim of this study was to (1) uncover the underlying structures of differences and commonalities of home-based care arrangements for persons living with dementia, (2) construct types of these care arrangements, and (3) compare these types with regard to their stability. METHOD: This is a secondary analysis of data from a convenience sample of n = 320 care arrangements for persons with dementia obtained in the observational DemNet-D study. Data were analysed using multiple correspondence analysis and hierarchical cluster analysis. Sociodemographic data and variables related to the structure of the care arrangement (D-IVA), burden of the informal carer (BICS-D), dementia severity (FAST), and quality of life of the person with dementia (QOL-AD) were included. RESULTS: The multiple correspondence analysis identified 27 axes that explained the entire variance between all care arrangements. The two axes ‘dementia and care trajectory’ and ‘structure of the dyadic relationship’ best distinguished care arrangements from each other and together explained 27.10% of the variance. The subsequent cluster analysis identified four types of care arrangements. Two types included spouse-centred care arrangements, and two types included child-centred care arrangements at different phases of the dementia and care trajectory. The types differ with regard to their stability. CONCLUSION: The results highlight the heterogeneity and commonality of care arrangements for persons living with dementia. They contribute to a better understanding of informal dementia home care. Furthermore, the results can guide the development of tailored support for persons living with dementia and their caring families. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-022-03310-1. BioMed Central 2022-09-01 /pmc/articles/PMC9438141/ /pubmed/36050645 http://dx.doi.org/10.1186/s12877-022-03310-1 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Dreyer, Jan
Bergmann, Johannes Michael
Köhler, Kerstin
Hochgraeber, Iris
Pinkert, Christiane
Roes, Martina
Thyrian, Jochen René
Wiegelmann, Henrik
Holle, Bernhard
Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis
title Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis
title_full Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis
title_fullStr Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis
title_full_unstemmed Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis
title_short Differences and commonalities of home-based care arrangements for persons living with dementia in Germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis
title_sort differences and commonalities of home-based care arrangements for persons living with dementia in germany – a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9438141/
https://www.ncbi.nlm.nih.gov/pubmed/36050645
http://dx.doi.org/10.1186/s12877-022-03310-1
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