Risk prediction of Alzheimer’s dementia in mild cognitive impairment – Impact of AD biomarker disclosure on quality of life, mental health and risk knowledge: The PreDADQoL study

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AbstractBackgroundExpanded technologies in early AD detection have led to an increasing number of individuals with mild cognitive impairment (MCI) asking for biomarker‐based risk prediction of Alzheimer’s dementia. However, standardized approaches for counseling and disclosure of individuals with MCI are lacking in clinical practice. First studies on cognitively healthy individuals and MCI patients have reported no major impact on psychological wellbeing after AD biomarker disclosure, but data on quality of life, health behavior changes and risk knowledge of individuals with MCI before and after AD biomarker disclosure is sparse.MethodThe transnational (Germany and Spain) project PreDADQoL recruited a total of 76 MCI patients and caregivers. Dyads received a standardized counseling on predictive biomarker‐based diagnosis of AD. MCI patients consenting to cerebrospinal fluid (CSF)‐biomarker testing received a standardized disclosure of their biomarker status and consecutive dementia risk. Following a mixed‐methods approach the empirical part of the project conducted follow‐up visits over 3 months to assess the effects of predictive AD diagnosis on various outcomes.ResultCounseling on biomarker‐based AD detection and disclosure of dementia risk has no major impact on mental health and quality of life on MCI patients and their caregivers on short term follow‐up. Although the counseling included recommendations on lifestyle modification, individuals with MCI and caregivers reported a significantly less beneficial lifestyle 3 months after risk disclosure as compared to baseline. Despite adequate numeracy skills, the dementia risk perception in individuals with MCI did not correlate with the communicated risk, whereas caregivers’ risk perception correlated significantly with the communicated risk.ConclusionOur findings confirm that predictive AD diagnosis causes no major harm with regard to mental health and quality of life. However, despite the psychoeducational approach during the counseling and disclosure sessions with facilitating supplies, such as visual aids and take‐home material, the anticipated fostering effects on health behavior and risk knowledge remain modest. Our study contributes to the extended understanding of individuals with MCI and their caregivers when facing early AD detection. The PreDADQoL study will synergize empirical data with ethical and legal considerations for a guidance of good clinical practice in the field of predictive AD diagnosis.