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INTRODUCTION: The Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study is a randomized clinical trial investigating the psychosocial, behavioral, and cognitive impacts of apolipoprotein E (APOE) genotype disclosure for late‐onset Alzheimer's disease (AD) among Latinos. METHODS: We used address‐based sampling to recruit English‐ and Spanish‐speaking Latinos aged 40–64 living in northern Manhattan for a community‐based Baseline Survey about their knowledge and opinions about AD. Participants eligible for the clinical trial were invited to complete an Introductory Session, including AD and genetics education and informed consent, before undergoing genotyping for APOE. Participants were then randomized to learn their risk of AD by age 85 (range: 21%–55%) based on either Latino ethnicity and family history alone, or the same factors and their APOE genotype. Risk information is provided in a semi‐structured genetic counseling session. Psychological impacts, health‐related behavioral changes, and cognitive performance are evaluated 6 weeks, 9 months, and 15 months later via surveys and qualitative interviews. To promote cultural competence, study materials were developed by a multidisciplinary team including bilingual and bicultural staff, Latinx content experts, and genetic counselors. RESULTS: We sent invitations to 91,433 households; 5542 (6.1%) responded, 2120 completed the Baseline Survey (78.5% online; 21.5% via computer‐assisted telephone interview), and 2087 were deemed eligible, yielding a response rate of 2.3%. Many participants expressed appreciation for the opportunity to contribute to AD research. We randomized 374 participants for the clinical trial. DISCUSSION: We describe the study design, recruitment and retention strategies, and interventions employed in the IDEAL Study. Our design provides a framework for future studies using rigorous mixed methods. Our findings may facilitate the development of culturally‐sensitive educational materials about AD and genetic testing, as well as genetic counseling protocols, to improve coping and adjustment in response to receiving risk information. Highlights: The Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study investigates apolipoprotein E (APOE) genotype disclosure among Latinos using mixed methods.We recruited adults 40–64 years of age without Alzheimer's disease (AD) for a community‐based survey and randomized trial.Trial participants receives AD risk estimates with or without APOE genotypes.Psychosocial, behavioral, and cognitive impacts are assessed over 15 months.Findings may inform AD educational materials and genetic counseling protocols. [ABSTRACT FROM AUTHOR]

Background: Alzheimer's disease (AD) risk is markedly increased among APOE ε4/ε4 homozygotes. Previous studies of APOE genotype disclosure impact have included few ethnic minorities. This study addresses this gap by investigating the immediate impact of disclosing an APOE ε4/ε4 genotype in the Información de la Enfermedad de Alzheimer para Latinos (IDEAL) study, a Latino community‐based study. Methods: IDEAL participants attended semi‐structured genetic counseling sessions conducted via Zoom in Spanish or English by certified genetic counselors. Sessions included a PowerPoint presentation covering genetics, genotype results, risk estimates, and AD prevention methods. Risk estimates were based on data from the Washington Heights‐Inwood Columbia Aging Project, a longitudinal study conducted in the same communities. The estimate of risk to age 85 among ε4 homozygotes was 55%. We transcribed session recordings and conducted content analysis. Results: Eleven ε4/ε4 participants aged 41‐64 attended risk evaluation sessions (English 8, Spanish 3). Six had a family history of AD (first‐degree 1, distant 5). Nine were women and two men. Overall, participants did not show strong emotional reactions. Many expressed surprise, accompanied by thoughtful reflections on the connection between their AD risk and perceived memory problems or emotional well‐being. Participants generally appreciated the information provided during the genetic counseling sessions because it offered insights into the importance of AD risk awareness and prevention strategies. Conclusion: Latinos at high AD genetic risk showed limited immediate emotional response to risk disclosure and appreciated the information that was shared. Longitudinal analyses may provide further insight into the impacts of this disclosure. This study is supported by the National Institute on Aging (R01 AG062528) and registered in ClinicalTrials.gov (NCT04471779). Keywords: Alzheimer's disease, APOE ε4ε4, genetic counseling, Latinos, qualitative research, risk disclosure [ABSTRACT FROM AUTHOR]

Background: Little research has been conducted regarding the relationship between sleep disorders and different pain types in Parkinson's disease (PD). Objective: To explore the influence of the various pain subtypes experienced by PD patients on sleep. Methods: Three hundred consecutive PD patients were assessed with the PD Sleep Scale‐Version 2 (PDSS‐2), King's PD Pain Scale (KPPS), King's PD Pain Questionnaire (KPPQ), Visual Analog Scales for Pain (VAS‐Pain), and Hospital Anxiety and Depression Scale. Results: According to the PDSS‐2, 99.3% of our sample suffered from at least one sleep issue. Those who reported experiencing any modality of pain suffered significantly more from sleep disorders than those who did not (all, P < 0.003). The PDSS‐2 showed moderate‐to‐high correlations with the KPPS (rS = 0.57), KPPQ (0.57), and VAS‐Pain (0.35). When PDSS‐2 items 10 to 12 (pain‐related) were excluded, the correlation values decreased to 0.50, 0.51, and 0.28, respectively, while these items showed moderate‐to‐high correlations with KPPS (0.56), KPPQ (0.54), and VAS‐Pain (0.42). Among the variables analyzed, multiple linear regression models suggested that KPPS and KPPQ were the most relevant predictors of sleep disorders (as per the PDSS‐2), although following exclusion of PDSS‐2 pain items, depression was the relevant predictor. Depression and anxiety were the most relevant predictors in the analysis involving the VAS‐Pain. Regression analysis, considering only the KPPS domains, showed that nocturnal and musculoskeletal pains were the best predictors of overall nocturnal sleep disorder. Conclusions: Pain showed a moderate association with nocturnal sleep dysfunction in PD. Some pain subtypes had a greater effect on sleep than others. [ABSTRACT FROM AUTHOR]

Introduction: The Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study is a randomized clinical trial investigating the psychosocial, behavioral, and cognitive impacts of apolipoprotein E ( APOE ) genotype disclosure for late-onset Alzheimer's disease (AD) among Latinos., Methods: We used address-based sampling to recruit English- and Spanish-speaking Latinos aged 40-64 living in northern Manhattan for a community-based Baseline Survey about their knowledge and opinions about AD. Participants eligible for the clinical trial were invited to complete an Introductory Session, including AD and genetics education and informed consent, before undergoing genotyping for APOE . Participants were then randomized to learn their risk of AD by age 85 (range: 21%-55%) based on either Latino ethnicity and family history alone, or the same factors and their APOE genotype. Risk information is provided in a semi-structured genetic counseling session. Psychological impacts, health-related behavioral changes, and cognitive performance are evaluated 6 weeks, 9 months, and 15 months later via surveys and qualitative interviews. To promote cultural competence, study materials were developed by a multidisciplinary team including bilingual and bicultural staff, Latinx content experts, and genetic counselors., Results: We sent invitations to 91,433 households; 5542 (6.1%) responded, 2120 completed the Baseline Survey (78.5% online; 21.5% via computer-assisted telephone interview), and 2087 were deemed eligible, yielding a response rate of 2.3%. Many participants expressed appreciation for the opportunity to contribute to AD research. We randomized 374 participants for the clinical trial., Discussion: We describe the study design, recruitment and retention strategies, and interventions employed in the IDEAL Study. Our design provides a framework for future studies using rigorous mixed methods. Our findings may facilitate the development of culturally-sensitive educational materials about AD and genetic testing, as well as genetic counseling protocols, to improve coping and adjustment in response to receiving risk information., Highlights: The Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study investigates apolipoprotein E ( APOE ) genotype disclosure among Latinos using mixed methods.We recruited adults 40-64 years of age without Alzheimer's disease (AD) for a community-based survey and randomized trial.Trial participants receives AD risk estimates with or without APOE genotypes.Psychosocial, behavioral, and cognitive impacts are assessed over 15 months.Findings may inform AD educational materials and genetic counseling protocols., Competing Interests: Neither the study's principal investigators (R.O. and K.S.) nor any of the other coauthors has any conflict of interest to disclose. Author disclosures are available in the supporting information., (© 2024 The Author(s). Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)