Exploring Narrative Identity via Linguistic Positioning in the Context of Alzheimer’s Dementia Risk Prediction – an Ethical and Linguistic Analysis

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AbstractBackgroundIn the field of Alzheimer’s disease (AD), possibilities of prediction are advancing due to the ever‐widening spectrum of technical and biomedical development. Such procedures become available to healthy persons, revealing risk probabilities to develop Alzheimer’s dementia in the course of one’s lifespan. The disclosure of and confrontation with such information can influence the individual’s self‐understanding, identity and life planning which raises various (bio‐)ethical issues on an individual and societal level. In this qualitative part of the PreTAD project, we aim to reveal information on the participants’ identity, through the analysis of their narrations ( = narrative identity), by focusing on language patterns participants use to express their positioning concerning risk prediction.MethodIn this qualitative‐explorative approach, we conduct N = 40 interviews with the following groups of participants: (a) general population, (b) first‐degree relatives of persons with Alzheimer’s dementia, (c) patients diagnosed with subjective cognitive decline (SCD). The interview design is guided by three themes relating to risk prediction of Alzheimer’s dementia: (1) individual experiences, (2) points of access and needs, (3) contextualization and associations. With this approach we seek to enable a ‘conversational’ interview in which linguistic patterns, (self‐)positioning and stance towards risk, health and disease reveal attitudes, individual values and therefore narrative identity. The basis of the multifaceted qualitative and linguistic analysis are Interpretative Phenomenological Analysis (IPA) and Conversation Analysis (CA).ResultPreliminary results show that the deliberate approach of thematically segmented but rather unstructured interaction and the focus on patients’ narrations proved fruitful in identifying findings concerning the participants’ identity and sense of self in the context of risk‐prediction of dementia. By focusing analytically on linguistic stance (attitude) and direct/indirect (self‐)positioning of the participants, we can gain in‐depth insights into individual values and attitudes towards risk, risk prediction of Alzheimer’s dementia and health.ConclusionAccording to initial findings, the focus on narrative identity leads to important insights into self‐understanding of persons confronted with a potential risk and can help to refine ethical questions concerning risk prediction. To ensure good clinical practice regarding predictive interventions those should be acknowledged in counselling and risk disclosure communication.