[Self-determination despite dementia! Participant protection instead of incapacitation in research : Report on the 5th Ethics Conference of the German Center for Neurodegenerative Diseases]. / Selbstbestimmung trotz Demenz! Probandenschutz statt Entmündigung in der Forschung : Tagungsbericht zur 5. Ethiktagung des Deutschen Zentrums für Neurodegenerative Erkrankungen (DZNE) Rostock/Greifswald.

ABSTRACT

In March 2019 the Ethics Conference of the German Center for Neurodegenerative Diseases (DZNE) was held for the fifth time. It was organized by the DZNE Rostock/Greifswald site and chaired by Prof. Wolfgang Hoffmann. The conference provided scientists, physicians, representatives of the German Alzheimer Society, (informal) caregivers of people with dementia (PwD), and other interested people with the opportunity to talk about the opportunities and limitations of research on and for PwD.Nationally and internationally recognized experts on healthcare services research, clinical research, nursing research, (geriatric) psychiatry, interdisciplinary ageing research, economic law, and psychotherapy discussed the pros and cons of a multitude of topics like self-determination, research participant decree, informed consent, and participation of PwD in research. The aim of the event was to reconcile the view of practice pleading for an ethically correct, human treatment of PwD and respecting their autonomy with participation in (clinical) studies. Experts controversially discussed and consolidated different points of view of practice and research.