Dementia Risk Estimation: Individual Needs and Preferences– Preliminary Data of the PreTAD‐Study

Abstract

AbstractBackgroundDue to new, more reliable and accessible technologies, a paradigm shift from curative to predictive and preventive medicine is emerging. Despite progress in the field of Alzheimer’s dementia risk estimation, little is known about the individual perspectives in this regard. The tri‐national PreTAD (The Predictive Turn in Alzheimer’s Disease: Ethical, Clinical, Linguistic and Legal Aspects) project aims to study the perspectives of individuals from the general population, first‐degree relatives of persons with Alzheimer’s dementia, APOE4 allele carriers, and of individuals with subjective cognitive decline (SCD) on individual risk factor assessment and dementia risk estimation. In a quantitative and qualitative longitudinal study, needs, preferences and decision‐making parameters will be conducted.MethodFor the quantitative study, hypothetical scenarios on predictive AD diagnosis for an individual person were developed. Based on these scenarios, instruments to measure psychological distress, subjective well‐being, quality of life, willingness to make lifestyle changes, and to take preventive measures were applied. The qualitative approach uses individual interviews to obtain complementary in‐depth information on personal preferences. Results of the pilot study with 10 cognitively unimpaired healthy participants and 10 participants with SCD are reported.ResultThe participants of the pilot study wanted to know their estimated personal risk of developing Alzheimer’s dementia. Higher test accuracy was more important than low invasiveness. In the pilot data, age and the possibility of influencing the risk by lifestyle changes, but also the attitude of relatives, influenced the decision for risk estimation. Willingness to assess dementia risk seems to be independent of the absence of causal treatment options.ConclusionThe PreTAD project will provide a deeper comprehension of needs and preferences regarding the individual dementia risk estimation. From an individual point of view, there seems to be an interest in risk assessment and prediction, which is influenced by a variety of factors. The findings of the PreTAD project will help to incorporate the perspectives of potential users risk estimation in the development of guidance for counseling and clinical management in predictive and preventive approaches in the field of dementia.