Dementia risk communication. A user manual for brain health Services-part 3 of 6

Abstract

Growing evidence suggests dementia incidence can be reduced through prevention programs targeting risk factors. To accelerate the implementation of such prevention programs, a new generation of brain health services (BHS) is envisioned, involving risk profiling, risk communication, risk reduction, and cognitive enhancement. The purpose of risk communication is to enable individuals at risk to make informed decisions and take action to protect themselves and is thus a crucial step in tailored prevention strategies of the dementia incidence. However, communicating about dementia risk is complex and challenging.In this paper, we provide an overview of (i) perspectives on communicating dementia risk from an ethical, clinical, and societal viewpoint; (ii) insights gained from memory clinical practice; (iii) available evidence on the impact of disclosing APOE and Alzheimer's disease biomarker test results gathered from clinical trials and observational studies; (iv) the value of established registries in light of BHS; and (v) practical recommendations regarding effective strategies for communicating about dementia risk.In addition, we identify challenges, i.e., the current lack of evidence on what to tell on an individual level-the actual risk-and on how to optimally communicate about dementia risk, especially concerning worried yet cognitively unimpaired individuals. Ideally, dementia risk communication strategies should maximize the desired impact of risk information on individuals' understanding of their health/disease status and risk perception and minimize potential harms. More research is thus warranted on the impact of dementia risk communication, to (1) evaluate the merits of different approaches to risk communication on outcomes in the cognitive, affective and behavioral domains, (2) develop an evidence-based, harmonized dementia risk communication protocol, and (3) develop e-tools to support and promote adherence to this protocol in BHSs.Based on the research reviewed, we recommend that dementia risk communication should be precise; include the use of absolute risks, visual displays, and time frames; based on a process of shared decision-making; and address the inherent uncertainty that comes with any probability. ; This paper was the product of a workshop funded by the Swiss National Science Foundation entitled "Dementia Prevention Services" (grant number: IZSEZ0_193593). Additional funding was obtained from EURO-FINGERS, an EU Joint Programme - Neurodegenerative Disease Research (JPND) project. The EURO-FINGERS project is supported through the following funding organizations under the aegis of JPND - www.jpnd.eu: Finland, Academy of Finland; Germany, Federal Ministry of Education and Research; Spain, National Institute of Health Carlos III; Luxembourg, National Research Fund; Hungary, National Research, Development and Innovation Office; The Netherlands, Netherlands Organisation for Health Research and Development (ZonMW-Memorabel #733051102); Sweden, Swedish Research Council. LNCV is funded by an Alzheimer Nederland fellowship (WE.15-2019-05). The Barcelonaβeta Dementia Prevention Study and its registry have received funding from the Barcelona City Council (20190454), the Health Department of the Catalan Government, the Catalan Agency for Health Quality and Evaluation, and Biogen. Hersenonderzoek.nl is supported by ZonMw-Memorabel (#73305095003), Gieskes-Strijbis Foundation, Alzheimer Nederland and Hersenstichting. GBF received funding by the EU-EFPIA Innovative Medicines Initiatives 2 Joint Undertaking (IMI 2 JU) "European Prevention of Alzheimer's Dementia consortium" (EPAD, grant agreement number: 115736) and "Amyloid Imaging to Prevent Alzheimer's Disease" (AMYPAD, grant agreement number: 115952); the Swiss National Science Foundation: "Brain connectivity and metacognition in persons with subjective cognitive decline (COSCODE): correlation with clinical features and in vivo neuropathology" (grant number: 320030_182772). WF, LNCV, and PS are recipients of ABOARD, which is a public-private partnership receiving funding from ZonMW (#73305095007) and Health~Holland, Topsector Life Sciences & Health (PPP-allowance; #LSHM20106).