Episode 7: Do Caregivers Value the New Antiamyloid Treatments for Alzheimer's Disease More Than Home-Based Care?

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Intro: From the National Institutes of Health Clinical Center, this is Discovering Hope and Science.

Janice Duran: My name is Janice from the Office of Communications and Media Relations, and I'll be your host. In today's episode, we're going to talk about the published article, Do Caregivers Value the New Anti-Amyloid Treatments for Alzheimer's Disease More Than Home-Based Care? And I'm very excited to have the author, Ms. Caroline Morehouse, with us today. Caroline Morehouse is a post-bacc fellow in the Department of Bioethics at the National Institutes of Health.

Duran:Hello and welcome, Caroline.

Caroline Morehouse: Hey, thanks for having me. I'm really excited to be here.

Duran: Right now, over 7 million Americans are living with Alzheimer's disease, and by 2050, this number is projected to rise to 13 million. For each person affected, there is a family member or friend acting as a caregiver. In 2024, unpaid caregivers provided an estimated 19 billion hours of care, valued at over 413 billion. Your study explored how caregivers perceived the value of the new Alzheimer's medication. What prompted you to ask this question, and how did you go about investigating it?

Morehouse: Okay, so I want to start by saying that as the first FDA-approved Alzheimer's disease medications in 20-some years, the new amyloid-targeting medications Lecanemab and Donanemab are a major advancement.

Morehouse: At the same time, these new medications have sparked some debate among clinicians and other commentators about their real-world value. For example, some have questioned whether their benefits outweigh their risks and potential burdens to patients. Given this uncertainty, we surveyed those intimately familiar with the disease, informal caregivers of persons with Alzheimer's, about their views on the new medications.

Morehouse: Specifically, we asked them to compare the value of amyloid-targeting medications to a widely used intervention in Alzheimer's disease, home-based care. By asking them to compare the new drugs to this sort of like a benchmark of a valuable intervention, we wanted to shed some light on the medication's real-world value, as well as where they fall within caregivers' care priorities. What were the main findings from your study about how caregivers perceived the value of new medications for Alzheimer's disease?

Morehouse: So, our top line finding was that when asked whether they would prefer to have their loved one's insurance cover the medication or home-based care when the time comes for either intervention, over half, about 57%, chose coverage for home-based care over the medication. And what was interesting was that this choice aligned well with respondents' attitudes toward the medication, but not home-based care.

Morehouse: Specifically, when asked to rate the importance of each intervention on its own, respondents in both coverage groups rated home-based care as highly important, like across the board. But those who ultimately favored the medication rated the medication as highly important as well, while those who favored home-based care tended to see the medication as less important for their loved ones.

Duran: Caregivers who preferred home-based care over coverage for medication were more likely to say that the medication's benefits don't outweigh the risk and burdens. Can you explain what those benefits, risk, and burdens are? How does this finding contribute to the ongoing debate about the clinical value of these medications?

Morehouse: Yeah, so this gets into what I see as the other important finding from our study. To answer the first part of your question, in an 18-month phase 3 clinical trial, Lecanemab and Donanemab seemed to slow the progression of early Alzheimer's disease by about 4 to 6 months.

Morehouse: At the same time, these new medications have sparked some debate among clinicians and other commentators about their real-world value. For example, some have questioned whether their benefits outweigh their risks and potential burdens to patients. Given this uncertainty, we surveyed those intimately familiar with the disease, informal caregivers of persons with Alzheimer's, about their views on the new medications.

Morehouse: Specifically, we asked them to compare the value of amyloid-targeting medications to a widely used intervention in Alzheimer's disease, home-based care. By asking them to compare the new drugs to this sort of like a benchmark of a valuable intervention, we wanted to shed some light on the medication's real-world value, as well as where they fall within caregivers' care priorities.

Duran: What were the main findings from your study about how caregivers perceived the value of new medications for Alzheimer's disease?

Morehouse: So, our top line finding was that when asked whether they would prefer to have their loved one's insurance cover the medication or home-based care when the time comes for either intervention, over half, about 57%, chose coverage for home-based care over the medication. And what was interesting was that this choice aligned well with respondents' attitudes toward the medication, but not home-based care.

Morehouse: Specifically, when asked to rate the importance of each intervention on its own, respondents in both coverage groups rated home-based care as highly important, like across the board. But those who ultimately favored the medication rated the medication as highly important as well, while those who favored home-based care tended to see the medication as less important for their loved ones.

Duran: Caregivers who preferred home-based care over coverage for medication were more likely to say that the medication's benefits don't outweigh the risk and burdens. Can you explain what those benefits, risk, and burdens are? How does this finding contribute to the ongoing debate about the clinical value of these medications?

Morehouse: Yeah, so this gets into what I see as the other important finding from our study. To answer the first part of your question, in an 18-month phase 3 clinical trial, Lecanemab and Donanemab seemed to slow the progression of early Alzheimer's disease by about 4 to 6 months.

Morehouse: At the same time, they carry risk of mild and severe symptoms from cerebral edema or hemorrhage associated with taking the drug, and those undergoing treatment undergo regular MRI monitoring for these symptoms, as well as monthly or bimonthly intravenous injections to receive the drug. So, after being presented with this information, what we found was that respondents' choice of medication versus home-based care tracked strongly with their specific attitudes towards these features of the drugs. For example, that substantial minority that ended up preferring medication over home-based care coverage were more likely to say that the medication offers a meaningful benefit and that those benefits outweigh the medication's risks and burdens.

Morehouse: Thus, another major takeaway was that decisions about these drugs and their perceived value may be highly preference sensitive. Thank you for sharing that. Your study suggests that caregivers who had a higher comprehension of the medication's benefits and risks were less likely to choose the medication over home-based coverage. Why might that be? So, we did find that respondents who indicated higher comprehension of the two interventions were less likely to favor medication over home-based care. While I can't really hypothesize as to why that would be because we didn't ask any further questions about that, what it does suggest for the clinical setting is that we need to have thorough informed consent discussions with patients and their caregivers about the specific features of these medications before moving forward with treatment.

Duran: If you could share one key takeaway from your research, what would it be?

Morehouse: So I think I'll just emphasize one more time that while more than half of our respondents perceived the drugs as having really modest value, their choice of medication versus home-based care aligned strongly with their attitudes toward the medication and its specific features. Thus, as these medications and presumably future disease-modifying drugs for Alzheimer's disease are rolled out in a clinical setting, our study calls for further investigation into what factors are important to patients themselves and how they will influence, you know, whether or not they decide to pursue treatment.

Duran: Thank you so much, Caroline, for joining us on our podcast. We really appreciate you coming here to talk more about your research. Thank you for having me. It was a joy to talk about our study. Thank you. Thanks for listening to Discovering Hope in Science. For more episodes, please visit cc.nih.gov slash research.