A qualitative study of people with Alzheimer's disease in a memory clinic considering lecanemab treatment

BackgroundPeople 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.ObjectiveWe aimed to understand how people with AD weigh the benefits and costs of anti amyloid mAbs and incorporate these into decisions about treatment.MethodsWe 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.ResultsAmong 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.ConclusionsResults 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.