Abstract
BackgroundScientific 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/designThe 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.DiscussionEPYLOGE 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 registrationThe study is registered in ClinicalTrials.gov (NCT03364179; Registered: 6. December 2017.
Highlights
Scientific research on palliative care in dementia is still underdeveloped
EPYLOGE is the first study in Germany that assesses palliative care and end-of-life issues in dementia
EPYLOGE serves as a basis for the improvement of palliative care in dementia
Summary
Abbreviations BDI II: Beck Depression Inventory II; BMBF: Bundesministerium für Bildung und Forschung, German Ministry for Education and Research; BSFC: Burden Scale for Family Caregivers; CAD-EOLD: Comfort Assessment of Dying with Dementia; CDR: Clinical Dementia Rating; CSI: Caregiver Strain Index; DEOLD: Dutch End of Life in Dementia; DS-DAT: Discomfort Scale in Dementia; EAPC: European Association for Palliative Care; EOLD-SM: End of Life in DementiaSymptom Management; EOLD-SWC: End of Life in Dementia-Satisfaction with Care; EPYLOGE: IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in Germany; FPCS: Family Perception of Care Scale of St. Michael’s Hospice North Hampshire; IMPACT: Implementation of quality indicators in palliative care study; LOD: Late onset dementia; LTC: Long term care; MMSE: Mini-Mental Status Examination; MSSE: Mini Suffering State Examination; NPI: Neuropsychiatric Inventory; PAINAD: Pain Assessment in Advanced Dementia; QUALID: Quality of Life in Late Stage Dementia; SAPV: Spezialisierte ambulante Palliativversorgung, specialized outpatient palliative care; WHO-5: WHO Five; YOD: Young onset dementia; ZULIDAD: Zürich Life and Death with Advanced Dementia
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