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Peer-reviewedCC BY-NCEuropean journal of neurology

Navigating the Challenges of Shared Decision-Making in Amyloid Immunotherapy for Alzheimer's Disease.

  • Grâce François1,2
  • Robin Michalon2
  • Thomas Tannou3
  • Philippe Damier4
  • Sonia Desmoulin5
  • Thibaud Lebouvier1
5 affiliations
  1. 1Lille Neuroscience & Cognition, UMR-S 1172, LabEx DISTALZ, Université de Lille, Inserm, CHU Lille, Lille, France.
  2. 2Recherches en éthique et épistémologie, U1018, Espace de Réflexion Éthique de la Région Île-de-France, Université Paris-Saclay, CESP, INSERM, Gustave Roussy, Villejuif, France.
  3. 3Faculté de médecine, Université de Montréal, Centre de Recherche, Institut de Gériatrie de Montréal, Québec, Canada.
  4. 4Nantes Université, INSERM, CHU Nantes, F-44093 Nantes, Hôpital Fondation Rothschild, Paris, France.
  5. 5Laboratoire Droit et Changement Social, UMR 6297, Nantes Université, CNRS, Nantes, France.
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Abstract

Background

Anti-amyloid therapies (AATs), such as lecanemab and donanemab, represent a major therapeutic development for early Alzheimer's disease (AD). However, safety risks and uncertainties regarding long-term effects make treatment decisions complex. These decisions arise when patients remain legally capable of providing informed consent but may experience cognitive vulnerabilities affecting their ability to engage in complex decisions. Shared decision-making (SDM) is therefore particularly relevant, yet its implementation raises ethical and practical challenges.Methods

This position paper draws on a multidisciplinary reflection on decision-making, informed consent, and cognitive vulnerability in early AD and AATs. The authors, with expertise in neurology, geriatrics, law, and history, examined challenges to patient participation and developed a relational framework integrating SDM and supported decision-making.Results

Impairments in memory, insight, and executive function, together with cognitive biases, stigma, and the complexity of AAT-related information, may compromise patient participation despite preserved legal capacity. Formal capacity assessments and improved information delivery may address some difficulties but are unlikely to provide comprehensive support. We propose a relational framework involving assessment of patients' cognitive vulnerabilities, values, preferences, and informational needs; tailored information; and involvement of a patient-designated care partner to support information exchange, deliberation, and expression of preferences. Consent should be iterative, with safeguards to preserve autonomy and confidentiality, prevent coercion, and avoid excluding socially isolated individuals.Conclusion

Combining SDM with supported decision-making may provide an ethical and practical framework for autonomous treatment decisions regarding AATs in early AD.

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Cite

BibTeXRIS
BibTeX
@article{francois2026navigating,
  title = {{Navigating the Challenges of Shared Decision-Making in Amyloid Immunotherapy for Alzheimer's Disease.}},
  author = {Grâce François and Robin Michalon and Thomas Tannou and Philippe Damier and Sonia Desmoulin and Thibaud Lebouvier},
  journal = {European journal of neurology},
  year = {2026},
  month = nov,
  doi = {10.1111/ene.70800},
  url = {https://europepmc.org/article/MED/42969459},
  note = {CC BY-NC},
}
RIS
TY  - JOUR
TI  - Navigating the Challenges of Shared Decision-Making in Amyloid Immunotherapy for Alzheimer's Disease.
AU  - Grâce François
AU  - Robin Michalon
AU  - Thomas Tannou
AU  - Philippe Damier
AU  - Sonia Desmoulin
AU  - Thibaud Lebouvier
PY  - 2026
DA  - 2026/11/01
JO  - European journal of neurology
DO  - 10.1111/ene.70800
UR  - https://europepmc.org/article/MED/42969459
AB  - Background  Anti-amyloid therapies (AATs), such as lecanemab and donanemab, represent a major therapeutic development for early Alzheimer's disease (AD). However, safety risks and uncertainties regarding long-term effects make treatment decisions complex. These decisions arise when patients remain legally capable of providing informed consent but may experience cognitive vulnerabilities affecting their ability to engage in complex decisions. Shared decision-making (SDM) is therefore particularly relevant, yet its implementation raises ethical and practical challenges.Methods  This position paper draws on a multidisciplinary reflection on decision-making, informed consent, and cognitive vulnerability in early AD and AATs. The authors, with expertise in neurology, geriatrics, law, and history, examined challenges to patient participation and developed a relational framework integrating SDM and supported decision-making.Results  Impairments in memory, insight, and executive function, together with cognitive biases, stigma, and the complexity of AAT-related information, may compromise patient participation despite preserved legal capacity. Formal capacity assessments and improved information delivery may address some difficulties but are unlikely to provide comprehensive support. We propose a relational framework involving assessment of patients' cognitive vulnerabilities, values, preferences, and informational needs; tailored information; and involvement of a patient-designated care partner to support information exchange, deliberation, and expression of preferences. Consent should be iterative, with safeguards to preserve autonomy and confidentiality, prevent coercion, and avoid excluding socially isolated individuals.Conclusion  Combining SDM with supported decision-making may provide an ethical and practical framework for autonomous treatment decisions regarding AATs in early AD.
SN  - 1351-5101
SN  - 1468-1331
ER  -