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

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Version: Final published version
License: CC BY 4.0
Serval ID
serval:BIB_7C1DC06BF4BE
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
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.
Journal
BMC psychiatry
Author(s)
Diehl-Schmid J., Hartmann J., Roßmeier C., Riedl L., Förstl H., Egert-Schwender S., Kehl V., Schneider-Schelte H., Jox R.J.
ISSN
1471-244X (Electronic)
ISSN-L
1471-244X
Publication state
Published
Issued date
31/08/2018
Peer-reviewed
Oui
Volume
18
Number
1
Pages
271
Language
english
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov't
Publication Status: epublish
Abstract
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.
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.
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.
The study is registered in ClinicalTrials.gov ( NCT03364179 ; Registered: 6. December 2017.
Keywords
Adult, Age of Onset, Aged, Caregivers/psychology, Decision Making, Dementia/psychology, Dementia/therapy, Female, Germany, Health Care Surveys/methods, Humans, Male, Middle Aged, Palliative Care/methods, Palliative Care/psychology, Patient Acceptance of Health Care/psychology, Prospective Studies, Quality of Life, Research Design, Dementia, Dying, Early onset dementia, End-of-life, Palliative care, Quality of life, Young onset dementia
Pubmed
Web of science
Open Access
Yes
Create date
10/09/2018 16:45
Last modification date
20/08/2019 15:37
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