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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.

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Information & Authors

Information

Published In

Neurology®
Volume 97Number 2July 13, 2021
Pages: 80-89
PubMed: 34524968

Publication History

Received: May 1, 2020
Accepted: March 8, 2021
Published online: July 12, 2021
Published in issue: July 13, 2021

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Disclosure

The authors report no discloses. Go to Neurology.org/N for full disclosures.

Study Funding

This is not a funded research study but a position statement of the Ethics, Law, and Humanities Committee (a joint committee of the AAN, ANA, and CNS).

Authors

Affiliations & Disclosures

Winston Chiong, MD, PhD
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
(1) NIH, R01AG058817, principal investigator, 2018-2023 (2) NIH, R01MH114860, principal investigator, 2017-2021 (3) NIH, R01AG022983, principal investigator, 2017-2022 (4) NIH, R01AG056715, co-investigator, 2017-2022 (5) NIH, RF1AG029577, co-investigator, 2019-2024 (6) NIH, U01NS098971, co-investigator, 2016-2019
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Amy Y. Tsou, MD
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
(1) NIH, 1R03HS025859-01, PI, 2018-2019 (2) AHRQ, 75Q80120D00002, Site Co-Director, 2019-2025 (3) AHRQ, Task Order 75Q80120F32004, Co-PI, 2020-2021 (4) ARHQ, Task Order 75Q80120F32001, Senior Methodologist, 2020 (5) AHRQ, Task Order 75Q80120F32002, Senior Methodologist, 2020-2021 (6) AHRQ, Contract No 290-2015-00005-I, Senior Methodologist, 2019
Research Support, Academic Entities:
1.
(1) PCORI, PI, 2019-2021
Research Support, Foundations and Societies:
1.
(1) Global Down Syndrome Foundation (2) John Templeton Foundation
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Zachary Simmons, MD
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.
Disclosure
Scientific Advisory Boards:
1.
Biogen - data safety monitoring board Alexion - data safety monitoring board
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Muscle & Nerve, Editor-in-Chief, 2017 to current
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
Amylyx, Cytokinetics - consultant
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
(1) Biogen, (2) Cytokinetics, (3) Biohaven, (4) Genzyme, (5) MT Phrma,
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
(1)Massachusetts General Hospital, (2) University of Kansas
Research Support, Foundations and Societies:
1.
ALS Association, ALS Association Greater Philadelphia Chapter
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Richard J. Bonnie, LLB
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
James A. Russell, DO
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.
Disclosure
Scientific Advisory Boards:
1.
1) Cytokinetics - Member - Data Monitoring Board PROTOCOL CY 5022 A PHASE 2, MULTI-CENTER, DOUBLE-BLIND, RANDOMIZED, DOSE- RANGING, PLACEBO-CONTROLLED STUDY TO EVALUATE THE EFFICACY, SAFETY, AND TOLERABILITY OF CK-2127107 IN PATIENTS WITH AMYOTROPHIC LATERAL SCLEROSIS (ALS)
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
(1) Non-profit - Mexican Academy of Neurology - Funded travel and lodging to speak at Annual Meeting Nov 2018 and 2019 - no honorarium - travel, lodging, meals only (2) Non-profit - ALS Association - funded travel and lodging to do site visit for ALSA certification of UVA ALS Clinic (3) Non-profit Honorarium (donated), travel, lodging for speaking AAN Fall meeting 2019 (Las Vegas)
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
(1) Neuromuscular Disorders, McGraw-Hill, 2nd edition published 2015, with subsequent royalities
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
Compensation for record review in two medical legal cases
on behalf of the Ethics, Law, and Humanities Committee (a joint committee of the American Academy of Neurology, American Neurological Association, and Child Neurology Society)*
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.

Notes

Correspondence Dr. Chiong [email protected]
Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
*
Ethics, Law, and Humanities Committee (a joint committee of the American Academy of Neurology, American Neurological Association, and Child Neurology Society) coinvestigators are listed in appendix 2 at the end of the article.

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