Older Adults Aware of Alzheimer’s, But Know Little About Aduhelm

Marisa Wexler MS avatar

by Marisa Wexler MS |

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Although the vast majority of older Americans are concerned about Alzheimer’s disease, most are unaware of Aduhelm (aducanumab), the recently approved treatment for the disease, according to a survey study.

“The contrast between older Americans who were very concerned about developing Alzheimer’s disease and those that actually knew anything about the drug was surprising,” Julie Zissimopoulos, PhD, a professor at University of Southern California (USC) and the study’s lead author, said in a press release.

The study, “Knowledge and Attitudes Concerning Aducanumab Among Older Americans After FDA Approval for Treatment of Alzheimer Disease,” was published as a research letter in JAMA Network Open.

Aduhelm, by Biogen and Eisai, received accelerated approval from the U.S. Food and Drug Administration (FDA) in June 2021 — becoming the first Alzheimer’s medicine in decades to be approved by the agency.

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The FDA’s decision was highly contentious, prompting a congressional inquiry and sparking members of an FDA advisory committee to resign in protest. Since its approval, concerns have risen around its pricing and accessibility. Most recently, a proposal that Medicare, which insures older people in the U.S., only cover Aduhelm for patients in clinical trials has drawn widespread criticism.

“Those of us who were closely following the news about the aducanumab approval process saw headline after headline,” said Mireille Jacobson, an economist, associate professor at USC, and study co-author.

To gauge how well the general public understood the approval, researchers surveyed 1,035 adults between July 15 and Aug. 11, 2021, who were participating in an online survey platform at USC.

Respondents had an average age of 67, just over half (54.8%) were women, and 83.6% were non-Hispanic whites.

The vast majority — 84.8% — expressed concern at the possibility of developing Alzheimer’s disease. However, only about 1 in 4 (26.8%) said they had some or fair knowledge of Aduhelm.

Survey participants were asked six true-or-false questions about Aduhelm, covering topics like efficacy, how it’s administered, and side effect profiles. The majority answered none of the questions correctly. Among the top 10% of respondents, the median number of questions with correct answers was three out of six.

These results “suggest a need for information sharing and processes for guiding decision-making of potential patients and their prescribing partners,” the researchers wrote.

Just under half of respondents (43.8%) thought that Aduhelm would provide a societal benefit. A slightly higher proportion expressed concerns about its costs to individuals (48.9%) or to Medicare (45%).

Less than 1 in every 4 respondents (23.2%) said that they would want to be treated with Aduhelm should they have Alzheimer’s.

“Health care professionals will need to educate patients about potential costs and benefits and to support patients’ decision making,” the researchers wrote.

Most of the respondents (60.4%) were unsure whether the availability of Aduhelm would make them more likely to be screened for cognitive problems indicative of Alzheimer’s. Notably, non-white respondents were generally more likely to express a willingness to undergo screening compared with whites.

“I take this higher willingness to be screened for cognitive impairment as a good signal, given that Black and Latino Americans are at higher risk of Alzheimer’s disease,” Zissimopoulos said. “As other new treatments come through the pipeline, it will be important for those most at risk to have the information they need to make informed decisions about treatment options.”