Leiden University Scholarly Publications

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Xu, J. (2026)

Cross‒cultural acceptability of interventions that may increase control at the end of life in people with dementia

Doctoral Thesis

The studies in this dissertation investigated acceptability of interventions that may increase the sense of control when applied in dementia care. The following research questions were addressed: 1) Are advance care planning (ACP), the use of monitoring technology, and euthanasia acceptable in end‒of‒life care for people with dementia? 2) Are there cross‒cultural differences in acceptability of these interventions? 


Within the CONT-END program, people with dementia, family caregivers, and physicians from 6 countries were interviewed. ACP was generally acceptable to physicians yet ethically complex. Euthanasia was more controversial and acceptability varied substantially between physicians within and across countries. Monitoring technologies may support symptom recognition, but require further development, stronger evidence and careful implementation. End‒of‒life dementia care should therefore not aim to maximize control in a uniform way. Offering tailored control in...

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The studies in this dissertation investigated acceptability of interventions that may increase the sense of control when applied in dementia care. The following research questions were addressed: 1) Are advance care planning (ACP), the use of monitoring technology, and euthanasia acceptable in end‒of‒life care for people with dementia? 2) Are there cross‒cultural differences in acceptability of these interventions? 


Within the CONT-END program, people with dementia, family caregivers, and physicians from 6 countries were interviewed. ACP was generally acceptable to physicians yet ethically complex. Euthanasia was more controversial and acceptability varied substantially between physicians within and across countries. Monitoring technologies may support symptom recognition, but require further development, stronger evidence and careful implementation. End‒of‒life dementia care should therefore not aim to maximize control in a uniform way. Offering tailored control in an uncertain situation can be helpful, but foremost, we should strive to align care with the person’s values, current needs, legal context and professional responsibilities.

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Dementia
End-of-life care
Palliative care
Advance care planning
Technology
Discomfort
Ethics
Euthanasia
Control
All authors
Xu, J.
Supervisor
Steen, J.T. van der; Achterberg, W.P.; Smaling, H.J.A.
Committee
Vos, H.M.M.; Linden, Y.M. van der; IJsselsteijn, W.A.; Delden, J.J.M. van; Janssen, D.J.A.
Qualification
Doctor (dr.)
Awarding Institution
Faculty of Medicine, Leiden University Medical Center (LUMC), Leiden University
Date
2026-09-24
ISBN (print)
9789493539624

Funding

Sponsorship
The research presented in thesis was supported by the European Research Council (Consolidator Grant agreement ID 771483). Financial support for printing of this thesis was provided by the department of Public Health and Primary Care of the Leiden University Medical Center.