Caregivers’ attitudes toward blood‐based biomarker testing for Alzheimer's disease

Abstract

Abstract INTRODUCTION We aimed to evaluate informal caregivers’ attitudes toward undergoing and future implementation of blood‐based biomarkers (BBBM) testing for Alzheimer's disease (AD). METHODS We explored caregivers’ perspectives, by combining an online survey (n = 107) with a subsequent focus group (n = 7). We used descriptive statistics and thematic content analysis to identify common themes in answers to open‐ended survey questions and focus group data. RESULTS Most caregivers (72.0%) favored BBBM for AD diagnosis. Provided with hypothetical scenarios, confidence in a normal result decreased significantly if experienced symptoms were more severe (mild: 78.5% vs. severe: 48.6%). Caregivers’ attitudes toward BBBM for screening purposes significantly improved with prospect of treatment (53.3% vs. 92.5%). Concerns toward BBBM testing included treatment unavailability, increased/prolonged distress, and AD‐related stigma. Potential benefits were actionability, explanation for symptoms, and opportunities for better care and future treatment. DISCUSSION Emerging AD treatment and reduction of AD‐related stigma could profoundly increase public interest in BBBM testing for AD. Highlights Most informal caregivers would want blood‐based biomarker (BBBM) testing for Alzheimer's disease (AD) diagnosis. Perceived (dis)advantages were related to diagnosing AD early. With severe symptoms, there was less confidence in normal BBBM results. Treatment availability would significantly increase interest in BBBM testing for AD. Informal caregivers showed uncertainty regarding the meaning of the term “AD.”

Keywords

• Alzheimer's disease
• blood‐based biomarkers
• caregivers
• dementia
• public patient involvement
• public perspective