Ethical Considerations in Dementia Diagnosis and Care: AAN Position Statement

Winston Chiong; Amy Y Tsou; Zachary Simmons; Richard J Bonnie; James A Russell; Ethics, Law, and Humanities Committee (a joint committee of the American Academy of Neurology, American Neurological Association, and Child Neurology Society)

doi:10.1212/WNL.0000000000012079

Ethical Considerations in Dementia Diagnosis and Care: AAN Position Statement

Neurology. 2021 Jul 13;97(2):80-89. doi: 10.1212/WNL.0000000000012079.

Authors

Winston Chiong¹, Amy Y Tsou², Zachary Simmons², Richard J Bonnie², James A Russell²; Ethics, Law, and Humanities Committee (a joint committee of the American Academy of Neurology, American Neurological Association, and Child Neurology Society)

Collaborators

Ethics, Law, and Humanities Committee (a joint committee of the American Academy of Neurology, American Neurological Association, and Child Neurology Society):
Katharina M Busl, Robin A Conwit, Salvador Cruz-Flores, Leon G Epstein, William D Graf, Matthew Kirschen, Julie A Kurek, Daniel G Larriviere, Ariane Lewis, Justin A Sattin, Ericka P Simpson, Lynne P Taylor, Laura Vernon

Affiliations

¹ From the Department of Neurology (W.C.), University of California San Francisco; Evidence-Based Practice Center (A.Y.T.), ECRI, Plymouth Meeting, PA; Division of Neurology (A.Y.T.), Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia; Department of Neurology (Z.S.), The Pennsylvania State University, Hershey; School of Law (R.J.B.), University of Virginia, Charlottesville; and Department of Neurology (J.A.R.), Lahey Medical Center, Burlington, MA. winston.chiong@ucsf.edu.
² From the Department of Neurology (W.C.), University of California San Francisco; Evidence-Based Practice Center (A.Y.T.), ECRI, Plymouth Meeting, PA; Division of Neurology (A.Y.T.), Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia; Department of Neurology (Z.S.), The Pennsylvania State University, Hershey; School of Law (R.J.B.), University of Virginia, Charlottesville; and Department of Neurology (J.A.R.), Lahey Medical Center, Burlington, MA.

PMID: 34524968
DOI: 10.1212/WNL.0000000000012079

Abstract

Alzheimer disease and other dementias present unique practical challenges for patients, their families, clinicians, and health systems. These challenges reflect not only the growing public health effect of dementia in an aging global population, but also more specific ethical complexities including early loss of patients' capacity to make decisions regarding their own care, the stigma often associated with a dementia diagnosis, the difficulty of balancing concern for patients' welfare with respect for patients' remaining independence, and the effect on the physical, emotional, and financial well-being of family caregivers. Caring for patients with dementia requires respecting patient autonomy while acknowledging progressively diminishing decisional capacity and continuing to provide care in accordance with other core ethical principles (beneficence, justice, and nonmaleficence). Whereas these ethical principles remain unchanged, neurologists must reconsider how to apply them given changes across multiple domains including our understanding of disease, clinical and legal tools for addressing manifestations of illness, our expanding awareness of the crucial role of family caregivers in providing care and maintaining patient quality of life, and societal conceptions of dementia and individuals' personal expectations for aging. This revision to the American Academy of Neurology's 1996 position statement summarizes ethical considerations that often arise in caring for patients with dementia; although it addresses how such considerations influence patient management, it is not a clinical practice guideline.

MeSH terms

Dementia / diagnosis*
Dementia / therapy*
Humans
Neurology / ethics*
Neurology / methods*