“I would constantly watch myself”: Individual Attitudes and Needs towards Dementia Risk Prediction and Risk Disclosure in Interviews (PreTAD)

Abstract

AbstractBackgroundResearch on medical risk profiles and early detection progresses rapidly. With the early knowledge of individual health risks comes, so the hope, the possibility of tailored prevention. Potential users and healthcare providers are facing new challenges in terms of decision‐making for risk prediction, education and counselling, as well as dealing with the risk information obtained. If, as in the case of Alzheimer’s disease, there are hardly any therapy and no healing options so far, risk prediction has an existential relevance and social impact, the extent of which has been little investigated yet. Therefore, supporting a self‐determined decision for or against dementia risk prediction, taking into account individual attitudes, needs and expectations, is of major importance. As part of the PreTAD‐project (The Predictive Turn in Alzheimer’s Disease: Ethical, Clinical, Linguistic and Legal Aspects), we aim to explore the attitudes, needs and expectations regarding early dementia prediction and risk disclosure in the general population, first‐degree relatives of persons with Alzheimer’s dementia or APOE4 allele carriers, and individuals with subjective cognitive decline (SCD).MethodIn the work package ethics, we (1) conduct an online‐survey within the general population and (2) carry out 40 narrative interviews with a) individuals from the general population, b) individuals with AD family history, and individuals diagnosed with SCD (either c) ≤ 4 weeks or d) > 4 weeks ago) to get an in‐depth view of individual attitudes and needs regarding early dementia prediction, the reasons for its approval or rejection, and to examine whether personal characteristics play a role in the decision‐making process. We analyze the interviews using type‐building qualitative content analysis (Kuckartz & Rädiker 2022).ResultPreliminary results of the first interviews (n = 5), accompanying the quantitative study, showed that participants tended to confuse the terms prediction and diagnosis in the context of Alzheimer’s. The driving reasons for or against prediction were 1) the anticipated impact on self‐determination and 2) self‐awareness, and 3) the anticipated psychological burden of risk knowledge.ConclusionHealthcare providers should carefully consider individual attitudes and expectations regarding dementia risk prediction as risk disclosure may have serious implications on individuals’ self‐determination, self‐awareness and mental health.