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

BMC Psychiatry
Janine Diehl-SchmidRalf J Jox

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 stu...Continue Reading

References

Nov 28, 2001·Alzheimer Disease and Associated Disorders·L VolicerZ V Blasi
Mar 3, 2010·Fortschritte der Neurologie-Psychiatrie·H FörstlG D Borasio
May 2, 2013·Alzheimer Disease and Associated Disorders·Jenny T van der SteenBregje D Onwuteaka-Philipsen
Jul 6, 2013·Palliative Medicine·Jenny T van der SteenUNKNOWN European Association for Palliative Care (EAPC)
Aug 7, 2013·Journal of Pain and Symptom Management·Simone A HendriksJenny T van der Steen
Aug 14, 2013·BMC Palliative Care·Steve IliffeUNKNOWN IMPACT research team
Jul 28, 2015·Journal of Pain and Symptom Management·Jenny T van der SteenUNKNOWN EU-COST Action TD1005 Collaborators

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Citations

Feb 2, 2021·Journal of Alzheimer's Disease : JAD·Julia HartmannJanine Diehl-Schmid
Apr 13, 2021·Journal of Alzheimer's Disease : JAD·Carola RoβmeierJanine Diehl-Schmid
Aug 14, 2021·Frontiers in Neurology·Marion OrtnerJanine Diehl-Schmid

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Clinical Trials Mentioned

NCT03364179

Software Mentioned

EPYLOGE

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