Author: Romy Van Rickstal
Date: 10-05-2023
Supervisors:
Prof. Dr. Lieve Van den Block, End-of-Life Care Research Group, Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel
Co-supervisors:
- Prof. Dr. Aline De Vleminck, End-of-Life Care Research Group, Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel
- Prof. Dr. Sebastiaan Engelborghs, Department of Neurology, Universitair Ziekenhuis Brussel, Brussels, Belgium. Center for Neurosciences (C4N), Vrije Universiteit Brussel (VUB), Brussels, Belgium. Department of Biomedical Sciences, University of Antwerp, Antwerp, Belgium
SUMMARY OF THE DISSERTATION
Perspectives of People with Dementia, Family Caregivers and Physicians
Perspectives of People with Dementia, Family Caregivers and Physicians Advance care planning is a process of communication between patients, family caregivers and professionals to explore patients’ preferences for future care, including at the end of life. Nonetheless the potential significance of advance care planning in dementia is agreed upon, its uptake is specifically low in this population. Although up to 9 procent of people with dementia develop symptoms before the age of 65 years old and, as such, are diagnosed with young-onset dementia, there is a dearth of studies including these younger patients and their family caregivers.
This dissertation gives insight into their own perspectives on advance care planning, as well as into those of physicians, through several interview-studies with people with young-onset dementia and their family caregivers themselves and a focus group study with physicians. The results of this work show that especially the content of advance care planning might have nuances for these younger persons confronted with dementia. Moreover, several challenges for engaging in advance care planning were identified from the perspective of both patients and family caregivers, as well as physicians. This dissertation led to several recommendations for practice, policy and future research.
