Re-aligning scientific and lay narratives of Alzheimer's disease
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This deep difference in use and understanding of the term can adversely affect the therapeutic alliance.
“This deep difference in use and understanding of the term can adversely affect the therapeutic alliance.12”
From Clinical diagnosis of Alzheimer’s disease: Recommendations of the International Working Group (2021) · cites this paper as [12]
For physicians, Alzheimer's disease equates with Alzheimer's disease neuropathological changes, whereas for patients, Alzheimer's disease equates with dementia, dependency, and death.
“For physicians, Alzheimer’s disease equates with Alzheimer’s disease neuropathological changes, whereas for patients, Alzheimer’s disease equates with dementia, dependency, and death.”
From Clinical diagnosis of Alzheimer’s disease: Recommendations of the International Working Group (2021) · cites this paper as [12]
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Dubois, B., Villain, N., Frisoni, G. B., Rabinovici, G. D., Sabbagh, M., Cappa, S., Bejanin, A., Bombois, S., Epelbaum, S., Teichmann, M., et al. (2021) · The Lancet Neurology · doi:10.1016/s1474-4422(21)00066-1 · Cited by 1,051 · see citing works
“These 2016 consensus meeting and 2018 criteria 1,7 have engendered significant debate about applying a biomarker-based disease diagnosis, with clinical symptoms and phenotype being used only for staging 9,10 .”
BackgroundSelf-citationThe probabilistic model of Alzheimer disease: the amyloid hypothesis revised
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Self-citationAlzheimer Disease as a Clinical-Biological Construct—An International Working Group Recommendation
Dubois, B., Villain, N., Schneider, L., Fox, N., Campbell, N., Galasko, D., Kivipelto, M., Jessen, F., Hanseeuw, B., Boada, M., et al. (2024) · JAMA Neurology · doi:10.1001/jamaneurol.2024.3770 · Cited by 426 · see citing works
Self-citationAlzheimer's disease outlook: controversies and future directions
Frisoni, G. B., Aho, E., Brayne, C., Ciccarelli, O., Dubois, B., Fox, N. C., Frederiksen, K. S., Gabay, C., Garibotto, V., Hofmarcher, T., et al. (2025) · The Lancet · doi:10.1016/s0140-6736(25)01389-3 · Cited by 112 · see citing works
Self-citationFrisoni, G. B., Molinuevo, J. L., Altomare, D., Carrera, E., Barkhof, F., Berkhof, J., Delrieu, J., Dubois, B., Kivipelto, M., Nordberg, A., et al. (2020) · Alzheimer's & Dementia · doi:10.1002/alz.12132 · Cited by 78 · see citing works
Self-citationDementia risk communication. A user manual for Brain Health Services—part 3 of 6
Visser, L. N. C., Minguillón, C., Sánchez‐Benavides, G., Abramowicz, M. J., Altomare, D., Fauria, K., Frisoni, G. B., Georges, J., Ribaldi, F., Scheltens, P., et al. (2021) · Alzheimer s Research & Therapy · doi:10.1186/s13195-021-00840-5 · Cited by 59 · see citing works
Self-citationMenardi, A., Dotti, L., Ambrosini, E., & Vallesi, A. (2022) · Journal of Neurology · doi:10.1007/s00415-022-11236-2 · Cited by 39 · see citing works
“Despite abnormal amyloid markers being recognized as an early indicator or risk factor of AD, it has been suggested to refrain from giving an AD diagnosis to patients with abnormal protein builds-up but normal cognitive functioning [7].”
BackgroundPreclinical Alzheimer's disease: a valid concept
Jack, C. R. (2019) · The Lancet Neurology · doi:10.1016/s1474-4422(19)30440-5 · Cited by 22 · see citing works
Preclinical Alzheimer’s dementia: a useful concept or another dead end?
Mark, R. E., & Brehmer, Y. (2022) · European Journal of Ageing · doi:10.1007/s10433-022-00735-w · Cited by 20 · see citing works
Dolci, G., Ellis, C. A., Cruciani, F., Brusini, L., Abrol, A., Galazzo, I. B., Menegaz, G., Calhoun, V. D., & Initiative, A. D. N. (2024) · Network Neuroscience · doi:10.1162/netn_a_00423 · Cited by 11 · see citing works
“In contrast, CN and SMC individuals with amyloid accumulation are subjects of ongoing debate, with no clear consensus on whether they represent a prodromal stage of AD or individuals at higher risk of developing the disease but still may never develop the disease ([27, 28]).”
BackgroundEspay, A. J., & Stecher, B. (2020) · Cambridge University Press eBooks · doi:10.1017/9781108888202 · Cited by 9 · see citing works
Fluid Markers of Alzheimer Disease
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Alzheimer Syndrome or Age-Related Dementia—History, Therapy and Prevention
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“This gap fosters public skepticism, which itself hinders progress in this field [272].”
Les phases prodromique et préclinique de la maladie d’Alzheimer
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Impact of the New Conceptual Framework of Alzheimer’s Disease in Imaging Studies
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Self-citationLalive, H. M., Griffa, A., Pini, L., Rouaud, O., & Allali, G. (2025) · Journal of Alzheimer s Disease · doi:10.1177/13872877251328953 · Cited by 1 · see citing works
Cerebrospinal fluid biomarkers and cognition in older adults
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The Hypothesis That Refuses to Die
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Espay, A. J., & Stecher, B. (2020) · Cambridge University Press eBooks · doi:10.1017/9781108888202.020
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Disease “Redefinition”: A Tough Pill to Swallow
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The Shaky Six and the “Second Reality”
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Predictions for the 2020s and Beyond
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The Scientific and Lay Narratives
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Note Added at Press Time – Reviving LOF
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Biomarkers: The Promise and the Fallacy
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Espay, A. J., & Stecher, B. (2020) · Cambridge University Press eBooks · doi:10.1017/9781108888202.021
- Authors
- Frisoni, G. B., Ritchie, C., Carrera, E., Nilsson, P., Ousset, P.-J., Molinuevo, J. L., Dubois, B., Scheltens, P., & Minoshima, S.
- ORCID
- Venue
- The Lancet Neurology
- Publisher
- Elsevier BV
- Published
- 2019-10
- Volume
- 18
- Issue
- 10
- Pages
- 918-919
- ISSN
- 1474-4422 (ISSN-L)
- OpenAlex
- W2972662099
- Cited by
- 39
- References
- 0
- Citations by year
- 2026: 1 · 2025: 4 · 2024: 3 · 2022: 2 · 2021: 4 · 2020: 24 · 2019: 1
- FWCI
- 6.19
- Type
- journal article
- Language
- en
- Open access
- Locations
- The Lancet Neurology (publishedVersion)
- PubMed (publishedVersion)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion)
- Archive ouverte UNIGE (University of Geneva) (submittedVersion, cc-by)
- Pure Amsterdam UMC (submittedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Physiology › Alzheimer's disease research and treatments
- Life Sciences › Pharmacology, Toxicology and Pharmaceutics › Pharmacology › Pharmaceutical industry and healthcare
- Keywords
- Alzheimer's disease, scientific narratives, misinformation, amyloid PET tracers, drug market, public perception of science
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