I am worth saving- A Qualitative Study of People with Alzheimers Disease Considering Lecanemab Treatment

Importance People with Alzheimer’s disease (AD) now have access to disease-modifying treatment with anti-amyloid monoclonal antibodies (mAbs). Their perception of risks and benefits and approach to treatment decisions remain unknown. Objective To understand how people with early AD consider benefits and costs of anti-amyloid mAbs and make decisions about treatment. Design Qualitative semi-structured interviews Setting Memory care clinics at two academic medical centers Participants People with biomarker or imaging-confirmed early AD referred for evaluation for treatment with anti-amyloid mAbs Main Outcomes and Measures Themes identified through content analysis Results Among 22 participants, mean age was 70 years, 8 (36%) were women, 22 (100%) were White, 8 (36%) had less than a college degree, 11 (50%) had annual income less than $100,000, and 6 (27%) lived in a rural area. The analysis revealed 3 major themes and associated subthemes: 1) People with AD sought and obtained information from different sources—advocacy organizations, the Internet, and clinicians; 2) hopes, expected benefits, and the existential threat of dementia drove willingness and readiness to start lecanemab—hopes included more time feeling like themselves and doing enjoyable activities; expected benefits included stalling progression, reversing cognitive decline or cure; 3) individual traits and preferences, family factors, and degree of trust in expertise influenced how people balanced risks and benefits— some would accept treatment at any cost; others carefully weighed risks and burdens carefully, but were motivated to pursue treatment by supportive families, insurance coverage, and trust in expertise; for a few, costs decidedly outweighed their personal benefits. People with AD desired more individualized information on risks and benefits and wanted to hear more from patients who took the medication. Conclusions and Relevance Results from this qualitative analysis inform clinician, health system and policy efforts to promote individualized treatment decisions for anti-amyloid mAb treatment through multimodal education and outreach, evidence-based communication skills, and adaptation of similar care models. Key Points Question How do people with Alzheimer’s disease (AD) decide on treatment with newly available anti-amyloid monoclonal antibodies? Findings In this qualitative analysis, people with AD considering treatment relied on multiple information sources; were motivated by hope to delay cognitive decline and preserve independence; and worried side effects would impair quality of life. Personality traits, family support, and trust in expertise determined how they balanced these tradeoffs. People with AD wanted more personalized information and to hear from others who had taken the medications. Meaning As access to treatment expands, these findings inform how clinicians can help people with AD make individualized treatment decisions.