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IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol

BACKGROUND: Scientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have...

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Autores principales: Diehl-Schmid, Janine, Hartmann, Julia, Roßmeier, Carola, Riedl, Lina, Förstl, Hans, Egert-Schwender, Silvia, Kehl, Victoria, Schneider-Schelte, Helga, Jox, Ralf J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6119330/
https://www.ncbi.nlm.nih.gov/pubmed/30170575
http://dx.doi.org/10.1186/s12888-018-1846-0
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author Diehl-Schmid, Janine
Hartmann, Julia
Roßmeier, Carola
Riedl, Lina
Förstl, Hans
Egert-Schwender, Silvia
Kehl, Victoria
Schneider-Schelte, Helga
Jox, Ralf J.
author_facet Diehl-Schmid, Janine
Hartmann, Julia
Roßmeier, Carola
Riedl, Lina
Förstl, Hans
Egert-Schwender, Silvia
Kehl, Victoria
Schneider-Schelte, Helga
Jox, Ralf J.
author_sort Diehl-Schmid, Janine
collection PubMed
description BACKGROUND: Scientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have focused on persons with dementia in long term care (LTC) facilities but have neglected persons that are cared for at home. We hypothesize that unmet care needs exist in advanced and terminal stages of YOD and LOD and that they differ between YOD and LOD. METHODS/DESIGN: The EPYLOGE-study (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) aims to prospectively assess and survey 200 persons with YOD and LOD in advanced stages who are cared for in LTC facilities and at home. Furthermore, EPYLOGE aims to investigate the circumstances of death of 100 persons with YOD and LOD. This includes 1) describing symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers’ needs and satisfaction; 2) comparing YOD and LOD regarding these factors; 3) developing expert-consensus recommendations derived from the study results for the improvement and implementation of strategies and interventions for palliative care provision; 4) and communicating the recommendations nationally and internationally in order to improve and adapt guidelines, to change current practice and to give a basis and perspectives for future research projects. The results will also be communicated to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians. DISCUSSION: EPYLOGE is the first study in Germany that assesses palliative care and end-of-life issues in dementia. Furthermore, it is the first study internationally that focuses on the specific palliative care situation of persons with YOD and their families. EPYLOGE serves as a basis for the improvement of palliative care in dementia. TRIAL REGISTRATION: The study is registered in ClinicalTrials.gov (NCT03364179; Registered: 6. December 2017.
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spelling pubmed-61193302018-09-05 IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol Diehl-Schmid, Janine Hartmann, Julia Roßmeier, Carola Riedl, Lina Förstl, Hans Egert-Schwender, Silvia Kehl, Victoria Schneider-Schelte, Helga Jox, Ralf J. BMC Psychiatry Study Protocol BACKGROUND: Scientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have focused on persons with dementia in long term care (LTC) facilities but have neglected persons that are cared for at home. We hypothesize that unmet care needs exist in advanced and terminal stages of YOD and LOD and that they differ between YOD and LOD. METHODS/DESIGN: The EPYLOGE-study (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) aims to prospectively assess and survey 200 persons with YOD and LOD in advanced stages who are cared for in LTC facilities and at home. Furthermore, EPYLOGE aims to investigate the circumstances of death of 100 persons with YOD and LOD. This includes 1) describing symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers’ needs and satisfaction; 2) comparing YOD and LOD regarding these factors; 3) developing expert-consensus recommendations derived from the study results for the improvement and implementation of strategies and interventions for palliative care provision; 4) and communicating the recommendations nationally and internationally in order to improve and adapt guidelines, to change current practice and to give a basis and perspectives for future research projects. The results will also be communicated to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians. DISCUSSION: EPYLOGE is the first study in Germany that assesses palliative care and end-of-life issues in dementia. Furthermore, it is the first study internationally that focuses on the specific palliative care situation of persons with YOD and their families. EPYLOGE serves as a basis for the improvement of palliative care in dementia. TRIAL REGISTRATION: The study is registered in ClinicalTrials.gov (NCT03364179; Registered: 6. December 2017. BioMed Central 2018-08-31 /pmc/articles/PMC6119330/ /pubmed/30170575 http://dx.doi.org/10.1186/s12888-018-1846-0 Text en © The Author(s). 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Study Protocol
Diehl-Schmid, Janine
Hartmann, Julia
Roßmeier, Carola
Riedl, Lina
Förstl, Hans
Egert-Schwender, Silvia
Kehl, Victoria
Schneider-Schelte, Helga
Jox, Ralf J.
IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol
title IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol
title_full IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol
title_fullStr IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol
title_full_unstemmed IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol
title_short IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol
title_sort issues in palliative care for people in advanced and terminal stages of young-onset and late-onset dementia in germany (epyloge): the study protocol
topic Study Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6119330/
https://www.ncbi.nlm.nih.gov/pubmed/30170575
http://dx.doi.org/10.1186/s12888-018-1846-0
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