Experiences of patient and care partner dyads in early Alzheimer’s disease: a mixed-method study in the United States

Understanding the holistic experience of patients with early Alzheimer's disease (AD) and their care partners is important to identify unmet needs. This study aimed to describe and compare patient-care partner dyad experiences and perspectives in early AD. Experiences of patients and their care partners (dyads) were explored using a survey, qualitative interviews, and social media listening. Each dyad completed a 25-minute quantitative online survey exploring their perceptions of symptoms, comorbidity impact, financial burden, and preferred treatment characteristics. Data were analyzed descriptively and comparatively. 150 patient-care partner dyads completed the survey. Patients and care partners frequently reported memory-related issues and cognitive challenges (68% and 77%, respectively); approximately 19% of responses were discordant, with patients often under-reporting symptoms. Managing comorbidities worsened overall well-being of patients (41%) and care partners (40%). Treatments slowing AD progression (patients: 99%; care partners: 96%) and improving symptoms (patients: 95%; care partners: 93%) were important. Approximately 26% of respondents experienced significant negative financial impacts. Patients and care partners perceived early AD impacts similarly whereas some symptoms were perceived differently. There was a shared desire for disease-modifying treatments. Limited financial impact may reflect preserved functionality and limited use of disease-modifying treatments.