Cargando…
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...
Autores principales: | , , , , , , , , , , , , , , , , , , , , |
---|---|
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 |
_version_ | 1785034983347322880 |
---|---|
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. |
format | Online Article Text |
id | pubmed-10148477 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT florackjanina projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT abelechristina projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT baischstefanie projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT forstmeiersimon projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT garmanndaniel projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT grondmartin projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT hornkeingmar projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT karakayatarik projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT karnebogejonas projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT knopfboris projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT lindlgregor projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT mullertanja projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT oswaldfrank projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT pfeiffernathalie projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT prvulovicdavid projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT pothaoife projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT reifandreas projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT schmidtmannirene projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT theileschurholzanna projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT ullrichheiko projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit AT haberstrohjulia projectdecidepartiidecisionmakingplacesforpeoplewithdementiainalzheimersdiseasesupportingadvancedecisionmakingbyimprovingpersonenvironmentfit |