Dementia risk communication. A user manual for Brain Health Services—part 3 of 6
-
Published:2021-10-11
Issue:1
Volume:13
Page:
-
ISSN:1758-9193
-
Container-title:Alzheimer's Research & Therapy
-
language:en
-
Short-container-title:Alz Res Therapy
Author:
Visser Leonie N. C., Minguillon Carolina, Sánchez-Benavides Gonzalo, Abramowicz Marc, Altomare DanieleORCID, Fauria Karine, Frisoni Giovanni B., Georges Jean, Ribaldi Federica, Scheltens Philip, van der Schaar Jetske, Zwan Marissa, van der Flier Wiesje M., Molinuevo José Luis
Abstract
AbstractGrowing 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.
Funder
Swiss National Science Foundation
Publisher
Springer Science and Business Media LLC
Subject
Cognitive Neuroscience,Clinical Neurology,Neurology
Reference80 articles.
1. Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet. 2020;396(10248):413–46. 2. Frisoni GB, Molinuevo JL, Altomare D, Carrera E, Barkhof F, Berkhof J, et al. Precision prevention of Alzheimer's and other dementias: Anticipating future needs in the control of risk factors and implementation of disease-modifying therapies. Alzheimers Dementia. 2020;16(10):1457–68. 3. Altomare D, Molinuevo JL, Ritchie C, Ribaldi F, Carrera E, Dubois B, Jessen F, McWhirter L, Scheltens P, van der Flier WM, Vellas B, Démonet JF, Frisoni GB. Brain Health Services: Organization, structure and challenges for implementation. A user manual for Brain Health Services – Part 1 of 6. Alzheimer's Research & Therapy. 2021. https://doi.org/10.1186/s13195-021-00827-2. 4. Ranson JM, Rittman T, Hayat S, Brayne C, Jessen F, Blennow K, van Duijn C, Barkhof F, Tang E, Mummery CJ, Stephan BCM, Altomare D, Frisoni GB, Ribaldi F, Molinuevo JL, Scheltens P, Llewellyn, DJ. Modifiable risk factors for dementia and dementia risk profiling. A user manual for Brain Health Services – Part 2 of 6. Alzheimer's Research & Therapy. 2021. https://doi.org/10.1186/s13195-021-00895-4. 5. Solomon A, Stephen R, Altomare D, Carrera E, Frisoni GB, Kulmala J, Molinuevo JL, Nilsson P, Ngandu T, Ribaldi F, Vellas B, Scheltens P, Kivipelto M. Multidomain interventions: state-of-the-art and future directions for protocols to implement precision dementia risk reduction. A user manual for Brain Health Services – Part 4 of 6. Alzheimer's Research & Therapy. 2021. https://doi.org/10.1186/s13195-021-00875-8.
Cited by
20 articles.
订阅此论文施引文献
订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献
|
|