The American Academy of Neurology (AAN), the world’s largest association of neurologists with more than 36,000 members, issues ethical guidelines for neurologists and neuroscience professionals caring for people with Alzheimer’s disease and other dementias. The new position statement is published in the online issue of July 12, 2021 Neurology, the medical journal of the American Academy of Neurology. This update to the 1996 AAN position statement was developed by the Ethics, Law, and Humanities Committee, a joint committee of the American Academy of Neurology, the American Association of Neurology, and the Society of Child Neurology.
“Dementia care and scientific understanding have advanced considerably, including greater recognition of non-Alzheimer’s dementias and advances in genetics, brain imaging, and biomarker testing,” said position statement author Winston Chiong, MD, Ph.D., of the University of California, San Francisco and a member of the AAN Ethics, Law, and Humanities Committee. “This position statement from the American Academy of Neurology focuses on the everyday ethical issues facing physicians, patients, and families in the course of dementia that. “
The position statement was prepared prior to FDA approval of the new drug adducanumab and does not treat this drug.
The AAN position statement states that the communication of a diagnosis of dementia it can be an ethical challenge. Some families may request the arrest of their loved one, but this can deprive the person of important opportunities to plan for future needs. In most cases, the statement says family members ’fears about potential emotional harm can be allayed through compassionate disclosure and therefore recommends ways to communicate serious information.
“Caring for people with dementia requires respecting their autonomy and involving them in their care preferences as soon as possible so that their wishes can be known, while acknowledging their diminished ability to make decisions,” said Orly Avitzur, MD, MBA, FAAN, President of the American Academy of Neurology. “This position statement provides guidance in accordance with basic ethical principles, supporting the mission of the American Academy of Neurology to promote patient-centered neurological care of the highest quality.”
The position statement states that Alzheimer’s disease is just one form of dementia and that symptoms can vary depending on the form of dementia a person has. Some forms begin with behavioral disorders that can be misinterpreted as a psychiatric rather than a neurological disorder.
The statement distinguishes between genetic testing or biomarkers in people with symptoms of dementia and testing in people who have no symptoms but are believed to be at risk for future dementia. Genetic and biomarker testing is not recommended in people without symptoms of dementia, except in a research context. The statement recommends that everyone do it genetic testing they should receive genetic counseling before and after receiving results.
Ethnic and racial disparities are persistent in the treatment of dementia and dementia. The statement notes that Latino and black people are at higher risk of developing dementia compared to white and Asian people, probably due to pre-life social and economic differences, and often experience delays in receiving a diagnosis of dementia in due to poorer access and unequal care. by the medical establishment and the subsequent distrust generated by this unequal care. It is said that doctors should be aware that those with different ethnic or cultural backgrounds from their own may have different perceptions of the disease and care priorities than they have.
For decision making, planning in the early stages of dementia is crucial. The statement says people with dementia should be encouraged to discuss their overall goals with their families and doctors, create advanced health care guidelines, and participate in other legal and financial planning as a guide for when already. they cannot make decisions. In moderate phases, it is possible for people to participate in decision-making by conveying their values to guide care decisions. When a person can no longer make decisions, their representatives should prioritize the preferences expressed above.
To daily activities how to drive, cook and manage finances, the position statement recommends that doctors and family members be alert to ways to control a person’s activities to minimize risks, while preserving their independence and dignity when possible.
The AAN also recognizes the potential for abuse and says doctors should look for and document physical signs of abuse, isolation of the person from trusted family or friends, non-payment of care needs, and malnutrition.
The position statement acknowledges that for some patients in advanced stages, there are ways to keep a person’s care at home. But he also suggests that doctors recommend checking if home care remains feasible when caregivers experience exhaustion.
While some may claim the death hastened by the doctor, which is legal in some states, the statement notes that these laws generally do not apply to people with dementia. These laws require that someone have an estimated survival of six months or less, even if they can make decisions on their own. People with such advanced dementia usually cannot make these decisions.
Finally, the position statement notes that families often suffer from significant associated financial stress dementia and says new ways to provide and fund long-term care are needed.
American Academy of Neurology
Citation: AAN issues ethical guidelines for the diagnosis and care of dementia (2021, July 12) retrieved July 12, 2021 at https://medicalxpress.com/news/2021-07-aan-issues-ethical- guidance-dementia.html
This document is subject to copyright. Apart from any fair treatment for the purposes of private study or research, no part may be reproduced without written permission. Content is provided for informational purposes only.