Dementia risk communication. A user manual for Brain Health Services-part 3 of 6

Leonie N C Visser, Carolina Minguillon, Gonzalo Sánchez-Benavides, Marc Abramowicz, Daniele Altomare, Karine Fauria, Giovanni B Frisoni, Jean Georges, Federica Ribaldi, Philip Scheltens, Jetske van der Schaar, Marissa Zwan, Wiesje M van der Flier, José Luis Molinuevo, Leonie N C Visser, Carolina Minguillon, Gonzalo Sánchez-Benavides, Marc Abramowicz, Daniele Altomare, Karine Fauria, Giovanni B Frisoni, Jean Georges, Federica Ribaldi, Philip Scheltens, Jetske van der Schaar, Marissa Zwan, Wiesje M van der Flier, José Luis Molinuevo

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.

Trial registration: ClinicalTrials.gov NCT03847038.

Keywords: Aging; Alzheimer’s disease; Brain Health Services; Dementia; Prevention; Risk communication.

Conflict of interest statement

GBF reports grants from Alzheimer Forum Suisse, Académie Suisse des Sciences Médicales, Avid Radiopharmaceuticals, Biogen, GE International, Guerbert, Association Suisse pour la Recherche sur l’Alzheimer, IXICO, Merz Pharma, Nestlé, Novartis, Piramal, Roche, Siemens, Teva Pharmaceutical Industries, Vifor Pharma, and Alzheimer’s Association; he has received personal fees from AstraZeneca, Avid Radiopharmaceuticals, Elan Pharmaceuticals, GE International, Lundbeck, Pfizer, and TauRx Therapeutics.

PS has received consultancy fees (paid to the institution) from AC Immune, Alkermes, Alnylam, Anavex, Biogen, Brainstorm Cell, Cortexyme, Denali, EIP, ImmunoBrain Checkpoint, GemVax, Genentech, Green Valley, Novartis, Novo Noridisk, PeopleBio, Renew LLC, Roche. He is PI of studies with AC Immune, CogRx, FUJI-film/Toyama, IONIS, UCB, Vivoryon. He serves on the board of the Brain Research Center.

WF has received consultancy fees (paid to the institution) from Oxford Health Policy Forum CIC, Roche BV. She has been an invited speaker at Boehringer Ingelheim, Biogen MA Inc, and WebMD Neurology (Medscape). She has performed contract research for Biogen MA Inc and Boehringer Ingelheim. All funding is paid to her institution. WF is associate editor at Alzheimer’s, Research & Therapy.

JLM is currently a full-time employee of Lundbeck and has previously served as a consultant or at advisory boards for the following for-profit companies, or has given lectures in symposia sponsored by the following for-profit companies: Roche Diagnostics, Genentech, Novartis, Lundbeck, Oryzon, Biogen, Lilly, Janssen, Green Valley, MSD, Eisai, Alector, BioCross, GE Healthcare, ProMIS Neurosciences.

The other co-authors declare that they have no competing interests.

© 2021. The Author(s).

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