Dementia Care Research and Psychosocial Factors

The predictive turn in Alzheimer's disease dementia (ADD) is marked by increasing research and use of biomarkers to determine individual ADD risk. It may even become available for the general population. Undergoing predictive testing and learning about the individual ADD risk is ethically relevant e.g., for (mental) well-being and self-perception and poses new challenges for clinical practice. The qualitative part of the PreTAD-project (Predictive Turn in Alzheimer's Disease: Ethical, Clinical, Linguistic, Legal Aspects) analyzes these ethical aspects to derive meaningful implications for handling ADD risk estimation in cognitively unimpaired individuals.

In our qualitative study, individuals a) who had no prior experience with ADD, b) with first-degree relatives with ADD, and c) with subjective cognitive decline created body maps alongside narrative interviews. Body mapping is a qualitative visual method by which we aimed to capture the embodied experience of hypothetically learning about (a, b) or a subjectively perceived (c) ADD risk. The body maps and interviews were systematically analyzed and triangulated.

In total, N = 28 participants created body maps (a, n = 8; b, n = 10; c, n = 10). The body maps provided deep, multifaceted insights into the embodiment of ADD risk. The focus on bodily sensations acted as a direct trigger for most participants to subjectively engage in a (hypothetical) scenario of being confronted with ADD risk. Participants experienced ADD risk as both a cognitive and bodily phenomenon, individually localized in different regions of their bodies (e.g., the heart). Common sensations were related to fear and anxiety or immediately perceived symptoms of cognitive decline, but also hope and urge to act, indicating a reflexive process of various sensations associated with ADD risk. Participants frequently used metaphors, e.g., describing heaviness ("a thousand tons"), to articulate their bodily sensations.

The body maps alongside the participants' narrations provided a multifaceted understanding of how bodily sensations, self-perception, and mental state are interwoven and can be influenced when individuals are confronted with ADD risk. The findings highlight the connection between bodily, cognitive and emotional experiences, which is relevant for person-sensitive risk communication. Body maps can inform ethical guidance for handling ADD risk estimation in clinical practice.