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Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit

BACKGROUND: The UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved th...

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Autores principales: Florack, Janina, Abele, Christina, Baisch, Stefanie, Forstmeier, Simon, Garmann, Daniel, Grond, Martin, Hornke, Ingmar, Karakaya, Tarik, Karneboge, Jonas, Knopf, Boris, Lindl, Gregor, Müller, Tanja, Oswald, Frank, Pfeiffer, Nathalie, Prvulovic, David, Poth, Aoife, Reif, Andreas, Schmidtmann, Irene, Theile-Schürholz, Anna, Ullrich, Heiko, Haberstroh, Julia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10148477/
https://www.ncbi.nlm.nih.gov/pubmed/37118723
http://dx.doi.org/10.1186/s12910-023-00905-0
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author Florack, Janina
Abele, Christina
Baisch, Stefanie
Forstmeier, Simon
Garmann, Daniel
Grond, Martin
Hornke, Ingmar
Karakaya, Tarik
Karneboge, Jonas
Knopf, Boris
Lindl, Gregor
Müller, Tanja
Oswald, Frank
Pfeiffer, Nathalie
Prvulovic, David
Poth, Aoife
Reif, Andreas
Schmidtmann, Irene
Theile-Schürholz, Anna
Ullrich, Heiko
Haberstroh, Julia
author_facet Florack, Janina
Abele, Christina
Baisch, Stefanie
Forstmeier, Simon
Garmann, Daniel
Grond, Martin
Hornke, Ingmar
Karakaya, Tarik
Karneboge, Jonas
Knopf, Boris
Lindl, Gregor
Müller, Tanja
Oswald, Frank
Pfeiffer, Nathalie
Prvulovic, David
Poth, Aoife
Reif, Andreas
Schmidtmann, Irene
Theile-Schürholz, Anna
Ullrich, Heiko
Haberstroh, Julia
author_sort Florack, Janina
collection PubMed
description BACKGROUND: The UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the ‘spatial intervention study’ of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. METHODS: People with a suspected or confirmed diagnosis of dementia in Alzheimer’s disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed. DISCUSSION: The results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice. Trial registration: DRKS00030799. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-023-00905-0.
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spelling pubmed-101484772023-04-30 Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit Florack, Janina Abele, Christina Baisch, Stefanie Forstmeier, Simon Garmann, Daniel Grond, Martin Hornke, Ingmar Karakaya, Tarik Karneboge, Jonas Knopf, Boris Lindl, Gregor Müller, Tanja Oswald, Frank Pfeiffer, Nathalie Prvulovic, David Poth, Aoife Reif, Andreas Schmidtmann, Irene Theile-Schürholz, Anna Ullrich, Heiko Haberstroh, Julia BMC Med Ethics Study Protocol BACKGROUND: The UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the ‘spatial intervention study’ of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. METHODS: People with a suspected or confirmed diagnosis of dementia in Alzheimer’s disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed. DISCUSSION: The results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice. Trial registration: DRKS00030799. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-023-00905-0. BioMed Central 2023-04-28 /pmc/articles/PMC10148477/ /pubmed/37118723 http://dx.doi.org/10.1186/s12910-023-00905-0 Text en © The Author(s) 2023 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 Study Protocol
Florack, Janina
Abele, Christina
Baisch, Stefanie
Forstmeier, Simon
Garmann, Daniel
Grond, Martin
Hornke, Ingmar
Karakaya, Tarik
Karneboge, Jonas
Knopf, Boris
Lindl, Gregor
Müller, Tanja
Oswald, Frank
Pfeiffer, Nathalie
Prvulovic, David
Poth, Aoife
Reif, Andreas
Schmidtmann, Irene
Theile-Schürholz, Anna
Ullrich, Heiko
Haberstroh, Julia
Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit
title Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit
title_full Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit
title_fullStr Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit
title_full_unstemmed Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit
title_short Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fit
title_sort project decide, part ii: decision-making places for people with dementia in alzheimer’s disease: supporting advance decision-making by improving person-environment fit
topic Study Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10148477/
https://www.ncbi.nlm.nih.gov/pubmed/37118723
http://dx.doi.org/10.1186/s12910-023-00905-0
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