Neurodegenerative disease management · 2025
Experiences of patient and care partner dyads in early Alzheimer's disease: a mixed-method study in the United States.
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Lv Lei, Fazio-Eynullayeva Elnara, Mystkowski Paul, McKay Caroline, Al-Zubeidi Tamara, Miller Jordan, McKee Stephanie, Bottomley Catherine, Floegel Catherine, Hyde Richard, Aly Abdalla
Аннотация
AIMS: 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.
PATIENTS & METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
PATIENTS & METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.