Risk knowledge and risk perception of MCI patients and their caregivers in predictive diagnosis of AD: Findings from the PreDADQoL study

Abstract

AbstractBackgroundIndividuals with mild cognitive impairment (MCI) and their caregivers face complex probabilistic information when seeking diagnostic work‐up of early detection of Alzheimer’s disease (AD). When counseling about biomarker‐based AD detection and communicating dementia risk, clinicians need to consider the magnitude of cognitive impairment and the numeracy skills of their patients, in order to enable an informed decision‐making. The transnational PreDADQoL project used a mixed‐methods approach to provide data on this topic and was conducted in Germany and Spain.MethodA total of 76 MCI patients and caregivers were recruited and followed‐up over 3 months after a standardized counseling session about predictive AD diagnosis and cerebrospinal fluid (CSF)‐biomarker‐based dementia risk prediction. MCI patients consenting to biomarker testing were scheduled for a disclosure session together with their caregiver, where the individual biomarker profile together with the dementia risk was communicated. Risk communication was facilitated by graphical displays and take‐home material. Questionnaires on numeracy skills such expectations towards the predictive testing were applied. Moreover, a questionnaire and an open question on the risk perception regarding the MCI patient’s risk to develop Alzheimer’s dementia within 5 years were assessed.ResultOn average MCI patients answered 58% of items testing numeracy scale correctly, and caregivers 66%. After counseling on biomarker‐based AD detection and dementia risk prediction a substantial number of patients (25%) and caregivers (40%) expected a precise detection of a disease from the biomarker testing and not a risk prediction. MCI patients perceived their risk of developing Alzheimer’s dementia to be equal or lower as compared to a healthy person. The caregivers‘ risk perception correlated significantly with the communicated risk, however, in MCI patients no correlation between communicated risk and risk perception was detected.ConclusionThe disclosure of dementia risk did not have a major impact on the MCI patients‘ risk perception, whereas the caregivers‘ risk perception correlated significantly with the communicated risk. This study depicts that clinicians should be aware that not all the contents of the counseling and disclosure information may be understood by patients. Furthermore, competing preexisting attitudes, expectations and knowledge of the individuals need to be acknowledged by clinicians when communicating dementia risk.