Inside China’s Lecanemab Experiment: What Families Really Think of the New Alzheimer’s Drug

For decades, families facing Alzheimer’s disease have had little to hope for beyond drugs that temporarily ease symptoms while the underlying neurodegeneration marches on. That changed with the arrival of lecanemab, an antibody therapy that clears amyloid-beta plaques from the brain and has been shown in clinical trials to slow cognitive decline in early-stage disease. But clinical trials capture only a narrow slice of reality. A new qualitative study from West China Hospital of Sichuan University, published in BMC Geriatrics, offers one of the first detailed looks at how families in China are actually living with this treatment — and the picture is far more complicated than the trial data suggest.

The research team, led by Yuhui Wang and colleagues in the Department of Neurology, conducted semi-structured in-depth interviews with family caregivers of patients with early Alzheimer’s disease who are currently receiving lecanemab. Using an exploratory qualitative design and reporting their work according to the COREQ guideline for qualitative research, the investigators set out to capture something that randomized controlled trials rarely measure: the lived experience of treatment, the practical burdens families shoulder, and the expectations that patients’ relatives bring to a therapy that represents a genuine but imperfect advance.

Three major themes emerged from the interviews. The first concerned families’ experiences and attitudes toward lecanemab treatment itself. The second revealed the multiple practical challenges surrounding treatment costs, informed decision-making, and the assessment of whether the drug is actually working. The third gathered families’ own proposals for how the system could be improved. Together, these themes sketch a portrait of a medical technology that has arrived in the real world before the support structures needed to use it well have caught up.

The most striking finding is the persistence of hope. Despite the considerable obstacles families described, the researchers found that families of Alzheimer’s patients in China still hold high expectations for lecanemab. This optimism is understandable in context: until recently, no approved therapy could alter the course of the disease at all. Lecanemab belongs to a new class of disease-modifying treatments — antibodies that bind to soluble and insoluble forms of amyloid-beta and recruit immune mechanisms to clear the plaques that accumulate in the brains of people with Alzheimer’s. In pivotal trials, the drug slowed clinical decline by roughly a quarter over 18 months, a modest but historically unprecedented effect.

Yet the interviews revealed that some families report something subtler than dramatic improvement: a perceived slowing in the rate of cognitive decline. This distinction matters enormously for how families judge the therapy’s worth. A treatment that does not restore lost function but delays further deterioration requires a fundamentally different kind of expectation-setting than the cures many families initially imagine. The gap between what families hope for and what the biology can deliver emerged as a central source of what the researchers call unmet expectations — a tension that shapes every stage of the treatment journey, from the decision to start therapy to the ongoing evaluation of its benefits.

Cost loomed large among the practical challenges. Lecanemab is administered by intravenous infusion, typically every two weeks, and requires regular monitoring with amyloid-targeting PET imaging or MRI to watch for a known and potentially serious side effect: amyloid-related imaging abnormalities, or ARIA. These abnormalities, which include edema and microhemorrhages in the brain, are usually asymptomatic but can in rare cases become severe. The combination of recurring infusion visits, repeated imaging, and specialist oversight makes the total cost of treatment substantial, and the study found that financial burden weighs heavily on families making treatment decisions. In a healthcare system where out-of-pocket spending remains significant, the economics of a disease-modifying therapy are not an afterthought — they are a central determinant of who gets treated and whether families can sustain the regimen.

The second cluster of challenges concerned informed decision-making itself. Families described difficulty obtaining and understanding the information needed to weigh the therapy’s potential benefits against its risks, costs, and demands. Informed consent for a disease-modifying therapy is technically demanding: it requires grasping probabilistic benefits, the mechanics of ARIA surveillance, the uncertainty about long-term outcomes, and the commitment to an indefinite treatment schedule. The study suggests that families often navigate this complexity without adequate support, relying on incomplete information and their own interpretations of what the therapy can achieve. This finding has direct clinical relevance, because decisions made under such conditions may lead either to premature discontinuation or to continued treatment driven by unrealistic expectations rather than realistic appraisal.

Efficacy assessment posed its own puzzle. Unlike a blood-pressure drug, whose effect can be verified with a cuff, lecanemab’s benefit is a slowing of decline that is difficult for families to perceive directly. Caregivers in the study grappled with how to judge whether the treatment was working, a problem compounded by the natural fluctuation of day-to-day symptoms in early Alzheimer’s. Without clear, family-accessible benchmarks for evaluating progress, caregivers are left to infer benefit from subtle changes in daily function — an unreliable signal that can fuel both unwarranted disappointment and misplaced confidence.

From these difficulties, the third theme distilled families’ own strategies for future improvement. The study’s authors argue that their findings provide valuable real-world insights into the use of lecanemab in Chinese patients with Alzheimer’s disease, and that these insights should inform the design of future clinical studies. The implication extends beyond China: as disease-modifying therapies for Alzheimer’s roll out globally, health systems everywhere face the same triad of affordability, informed consent, and benefit communication. The caregiver experience documented in Chengdu is a preview of challenges that clinics in every country will confront as amyloid-targeting antibodies move from trial populations to routine care.

The study also carries a methodological significance. Real-world qualitative evidence of this kind complements trial data by revealing the friction points that determine whether a therapy succeeds outside controlled conditions — adherence, persistence, satisfaction, and the psychological economy of hope. The authors received ethical approval from the Ethics Committee of West China Hospital of Sichuan University, followed the Declaration of Helsinki’s principles for informed consent and confidentiality, and report no competing interests. As the first generation of Alzheimer’s patients and their families live with lecanemab, their voices — captured here in careful detail — may prove as important to the therapy’s ultimate success as the antibody molecules themselves. The era of disease-modifying Alzheimer’s treatment has begun, and it is being navigated, infusion by infusion, by families whose expectations, finances, and emotional reserves are being tested in real time.

Subject of Research: Real-world experiences and treatment preferences of family caregivers of Alzheimer's patients receiving lecanemab in China

Article Title: Navigating a new era of disease-modifying therapy: experiences, treatment preferences, and unmet expectations of family caregivers of Alzheimer’s patients receiving lecanemab in China

Article References: Wang, Y., Liang, Y., Yi, X., Zhang, Y., Huang, J., Lu, X., li, C., & Chen, D. (2026). Navigating a new era of disease-modifying therapy: experiences, treatment preferences, and unmet expectations of family caregivers of Alzheimer’s patients receiving lecanemab in China. BMC Geriatrics. https://doi.org/10.1186/s12877-026-08524-1

Image Credits: AI Generated

DOI: 10.1186/s12877-026-08524-1

Keywords: Alzheimer's disease, lecanemab, disease-modifying therapy, family caregivers, qualitative research, amyloid-beta, treatment experience, China, dementia, healthcare costs, informed decision-making, BMC Geriatrics