P531: Family members' knowledge and perspectives on Alzheimer's disease in people with Down syndrome

Introduction:The increased life expectancy of individuals with Down syndrome (DS) has led to a growing awareness of their higher risk for Alzheimer's disease (AD).Despite this known association, limited research exists on family members' knowledge of this association (DS-AD) and their perspectives on acquiring this critical information.This study aimed to assess family members' knowledge of DS-AD, explore their information-seeking behaviors, and evaluate their attitudes toward research participation.Methods: The study recruited family members of individuals with Down syndrome through (1) collaborations with more than twenty Down syndrome associations and support groups across the United States, (2) direct outreach at DS clinics, and (3) participation in the National Down Syndrome Congress Annual Convention held in July 2024.Participants were required to be adults residing in the United States who could read English or Spanish.This approach yielded 153 valid survey completions.The survey incorporated three instruments: the validated Alzheimer's Disease Knowledge Scale (ADKS), a newly developed Down Syndrome and Alzheimer's Disease Knowledge Scale (DSADKS), and the validated Research Attitudes Questionnaire (RAQ).Additionally, we collected data on participants' preferences regarding the timing and methods of learning about DS-AD.Statistical analyses included t-tests and ANOVA for group comparisons and correlational analyses for examining relationships between knowledge levels and various demographic factors.Results: Analysis revealed varying levels of AD knowledge, with ADKS scores ranging widely and specific gaps in knowledge about DS-AD.Educational level and ethnicity emerged as significant factors influencing DS-AD knowledge levels, with graduate degree holders scoring significantly higher than those with high school or lower education (p<0.001) and non-Hispanic participants demonstrating higher scores than Hispanic participants (p<0.0001).The timing of DS-AD awareness varied considerably, with 36% of participants learning about it before their loved one reached age 10, 25% learned during ages 11-30, 18% learned during ages 31-50, and 9% learned after age 50, while 12% were unaware of this connection.Notably, 31% of participants preferred not to share DS-AD information with their loved ones with DS.Reading educational materials about DS-AD significantly increased concern levels, particularly among those with lower initial knowledge scores (p<0.05) and family members of younger (<35 years) individuals with DS (p<0.01).Self-learning (39%) and DS support organizations (36%) were the preferred information sources, while healthcare providers account for a surprisingly limited portion (9%) of preferred information sources.Support group utilization showed no significant relationship to knowledge levels despite high participation rates.The analysis of research attitudes revealed consistent positive views across demographic groups, with RAQ total scores showing no significant variations by age, gender, ethnicity, race or education level.Conclusion: These findings highlight the need for targeted educational interventions and culturally sensitive approaches to DS-AD information delivery.The disassociation between support group participation and knowledge levels suggests that support groups might fill a role for families that is distinct from providing education.The strong preference for self-learning indicates a need for developing reliable, accessible educational resources.While research attitudes were consistently positive across demographic groups, the research participation rate (55%) has room for improvement through providing more opportunities, reducing participation barriers and enhancing recruitment approaches.These insights can guide the development of more effective educational strategies and research recruitment approaches for families with DS.