Home Care of People With Advanced Late-Onset and Young-Onset Dementia Living in Germany

Purpose: The focus of this study was people with advanced dementia with young- and late-onset who were cared for at home, as well as their family caregivers. It was aimed to gain insight into symptoms, quality of life, treatment, health care utilization, well-being of the family caregiver, and differences between young-onset and late-onset dementia (YOD and LOD). Methods and Patients: The monocentric, prospective EPYLOGE study (IssuEs in Palliative Care for People in Advanced and Terminal Stages of Young-Onset and Late-Onset Dementia in Germany; ClinicalTrials.gov: NCT03364179) included 191 people with advanced dementia. For the current analyses data on symptoms, suffering, care, (palliative) therapy, and the burden on relatives from a subset of 88 people with advanced YOD and LOD who were cared for or at home and their caregivers were analyzed. Results: Key findings were that in an advanced dementia stage, the overall levels of suffering, discomfort, and symptom burden are low, matching with an only slight to moderate impairment of quality of life. Further, the study showed that differences between LOD and YOD are only minor, with the exception of the caring constellation and health care utilization. Caregiver strain was higher in caregivers of persons with advanced YOD than LOD. Conclusion: Since family constellations and living situations differ for people with advanced dementia, particular emphasis on counseling and support must be placed on ensuring that the support offered is tailored to the individual case. At the same time, an improved information policy and efforts to reduce hesitations about utilizing services are necessary for optimal service use.