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

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• dc.contributor.author Visser Leonie N.C.
• dc.contributor.author Minguillón, Carolina
• dc.contributor.author Sánchez Benavides, Gonzalo
• dc.contributor.author Abramowicz, Marc
• dc.contributor.author Altomare, Daniele
• dc.contributor.author Fauria, Karine
• dc.contributor.author Frisoni, Giovanni B.
• dc.contributor.author Georges, Jean
• dc.contributor.author Ribaldi, Federica
• dc.contributor.author Scheltens, Philip
• dc.contributor.author Jetsk van der Schaar, Philip
• dc.contributor.author Zwan, Marissa
• dc.contributor.author van der Flier, Wiesje M.
• dc.contributor.author Molinuevo, José Luis
• dc.date.accessioned 2022-05-06T06:46:03Z
• dc.date.available 2022-05-06T06:46:03Z
• dc.date.issued 2021
• dc.description.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.
• dc.description.sponsorship 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).
• dc.format.mimetype application/pdf
• dc.identifier.citation Visser LNC, Minguillon C, Sánchez-Benavides G, Abramowicz M, Altomare D, Fauria K, et al. Dementia risk communication. A user manual for brain health Services-part 3 of 6. Alzheimers Res Ther. 2021 Oct 11;13(1):170. DOI: 10.1186/s13195-021-00840-5
• dc.identifier.doi http://dx.doi.org/10.1186/s13195-021-00840-5
• dc.identifier.issn 1758-9193
• dc.identifier.uri http://hdl.handle.net/10230/53008
• dc.language.iso eng
• dc.publisher BioMed Central
• dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/115952
• dc.rights Copyright © The Author(s) 2021 . Open Access. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
• dc.rights.accessRights info:eu-repo/semantics/openAccess
• dc.rights.uri http://creativecommons.org/licenses/by/4.0/
• dc.subject.keyword Aging
• dc.subject.keyword Alzheimer’s disease
• dc.subject.keyword Brain Health Services
• dc.subject.keyword Dementia
• dc.subject.keyword Prevention
• dc.subject.keyword Risk communication
• dc.title Dementia risk communication. A user manual for brain health Services-part 3 of 6
• dc.type info:eu-repo/semantics/article
• dc.type.version info:eu-repo/semantics/publishedVersion