gms | German Medical Science

Current research about the assessment of decision-making capacity (DMC) of persons with dementia (PwD) shows that DMC is situation specific. Moreover PwD could not be assumed as incompetent solely on the basis of their diagnosis. Even if two of four components of DMC are impaired, namely understanding and reasoning, PwD could express a choice. This evidence raises questions about the underlying assumption of rational choices as the basis of decision-making and demonstrates the need to take non-cognitive aspects of decision-making into consideration.

The present study aims at investigating non-cognitive aspects which enable PwD to decide whether or not they want to participate in clinical research. Via an explorative approach non-cognitive dimension should be identified. Data will be collected through Problem-Centered-Interviews (PCI) with PwD and their relatives, who participate in enhanced consent procedures for research-participation. The PCI combines different communication strategies and is therefore an appropriate method to be adapted to the cognitive and verbal competences and needs of PwD.

The discussion of preliminary results should lead to a critical analysis of the emphasis of cognition in the scientific debate about decision-making in dementia, especially in the assessment of DMC. In the light of a disease, which leads to increasing cognitive decline, the discussion should result in a consideration of values, emotions, biography, motivation and context factors as influencers of decision-making.

The involvement of the perspective of PwD allows to derive non-cognitive aspects of decision-making and could contribute to a holistic view on decision-making-processes and a broader perspective on competence assessments.