Alzheimer's Association workgroup suggests language for clinicians to talk to their patients about new treatments

Abstract

The availability of US Food and Drug Administration (FDA)-approved therapies for early Alzheimer's disease (AD) challenges clinicians and health-care providers with effectively communicating the risks, benefits, burdens, costs and available support associated with these treatments to patients, families, and other health-care providers. The task is essential but complex.

The Alzheimer's Association Clinical Meaningfulness Workgroup has developed recommendations and suggested language to help health-care providers explain newly approved AD treatments to patients and caregivers. “Benefits and Risks of FDA-Approved Amyloid-Targeting Antibodies for Treatment of Early Alzheimer's Disease: Navigating Clinician-Patient Engagement” was published online October 15.¹

The paper focuses on FDA-approved amyloid-targeting antibody therapies for early AD, which offer hope by slowing disease progression. However, these treatments are not cures, and thoughtful management—including ongoing, clear, factual communication—is required.

“The language and guidance in the article emphasizes the need for clear and empathetic communication between clinicians, patients, and caregivers regarding treatment eligibility, risks, benefits, and costs,” said Maria C. Carrillo, PhD, Alzheimer's Association chief science officer and medical affairs lead, and senior author on the article. “It also stresses the importance of genetic testing in advance, ongoing monitoring for side effects, and managing the logistical and financial issues associated with treatment.”

“This effort was catalyzed by Alzheimer's patients and families sharing their enthusiasm, but also their concerns—telling us what they want and need to know about these drugs, and the confusion and discord they have experienced because of the contentious public discussion about the FDA-approved treatments for early Alzheimer's,” Carrillo explained. “The issues are complex, but can be discussed in a way that everyone can understand. We do this for cancer treatment. We can do this for Alzheimer's.”

The Workgroup was formed in 2022 as part of the Alzheimer's Association's efforts to provide resources for clinicians about the benefits and risks of FDA-approved amyloid-targeting therapies for AD. It brought together experts in dementia care, academia, drug development, and the clinical community. The Workgroup received input from experienced clinicians outside the academic and industry communities and from the Alzheimer's Association Early-Stage Advisory Group, which includes individuals with early Alzheimer's dementia or mild cognitive impairment, to incorporate patient perspectives.

“As new Alzheimer's therapies are approved, there may be different risks and expectations,” said Dorene M. Rentz, PsyD, professor of neurology, Harvard Medical School, and lead author of the paper. “Our goal is to update this resource to facilitate those discussions, as needed.”

“The Alzheimer's Association is committed to providing dementia professionals with guidance to tackle challenges in the fight against Alzheimer's,” Carrillo said.