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

Abstract

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.