A Qualitative Study of People with Alzheimer's Disease in a Memory Clinic Considering Lecanemab Treatment.

Background: 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: We aimed to understand how people with AD weigh the benefits and costs of anti-amyloid mAbs and incorporate these into decisions about treatment.

Methods: We conducted semi-structured interviews with people with biomarker- or imaging-confirmed AD and mild or moderate cognitive impairment who were seen at memory care clinics and discussed lecanemab with a clinician. Interviews were recorded, transcribed, and deidentified. Thematic analysis identified themes and subthemes.

Results: Among 22 participants (mean age 70, 8 [36%] women, 22 [100%] White), 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; 3) Individual traits, 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, but were motivated 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 and to hear more from patients who took the medication.

Conclusion: Results from this first qualitative study of people with AD considering treatment with anti-amyloid mAbs can inform clinician, health system and policy efforts to individualize decisions.