Background/Objectives: Disclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, however, is known about how families will react to this information. Design and Setting: Semi-structured telephonic interviews.Participants: Seventy study partners (mean age = 68 [±11]; 50% female; 70% spouses/significant others; 18% children, siblings; 12% friends) of cognitively unimpaired adults who learned a personalized AD dementia risk estimate and an amyloid-β PET scan result through their participation in preclinical AD research. Measurement:Interviewees were asked about their desire for information regarding their family member's AD dementia risk, baseline expectations of risk, understanding of amyloid-β PET scan results, and the impact of AD dementia risk information on emotions, health behaviors, and future plans, as well as on perceptions of their family member's or friend's memory.Results: Interviewees generally understood the AD dementia risk information (83%) and considered it valuable (75%). Risk information perceived as favorable elicited feelings of happiness and relief; unfavorable information elicited disappointment, as well as increased awareness of the participants' memory and monitoring for incipient changes in cognition. While noting that AD dementia risk information was not medically actionable at this time due to the lack of disease-modifying therapies, some interviewees described changes to their family members' and their own health behaviors and future plans. Conclusion:Guidelines for the disclosure of AD dementia risk estimates and biomarker results to cognitively unimpaired adults should account for the needs and interests of individuals and their family members, who may step into a pre-caregiver role.

Background: Current practice guidelines recommend against Apolipoprotein E (APOE) testing. However, advances in Alzheimer’s disease (AD) research may soon change this. Objective: To examine longitudinally the experience of learning an APOE result and, if an ɛ4 carrier, taking a disease-specific treatment to reduce one’s risk of AD. Methods: Fifty ɛ4 carriers and 20 non-carriers completed semi-structured interviews 3 months and 15 months after APOE disclosure. Results: Individuals generally understand their APOE results. While non-carriers felt relief, ɛ4 carriers often described themselves as disappointed by their result but nevertheless glad to know. Carriers expressed concerns about stigma and discrimination, including in the workplace. Carriers adopted new health behaviors at higher rates than non-carriers and revised their future plans to account for their increased risk of AD. Individuals participating in research were hopeful that their participation would help them or others; individuals who learned they were at increased risk for AD but who could not participate in research were disappointed. Conclusion: Providers disclosing APOE results should be sensitive to how APOE results shape emotions, self-perceptions, and attitudes about memory; raise concerns about stigma and discrimination in personal and professional relationships; influence health behaviors and decision-making; and can have follow-on effects on family members.

Background Substance use by youth remains a significant public health concern. Social media provides the opportunity to discuss and display substance use–related beliefs and behaviors, suggesting that the act of posting drug-related content, or viewing posted content, may influence substance use in youth. This aligns with empirically supported theories, which posit that behavior is influenced by perceptions of normative behavior. Nevertheless, few studies have explored the content of posts by youth related to substance use. Objective This study aimed to identify the beliefs and behaviors of youth related to substance use by characterizing the content of youths’ drug-related tweets. Using a sequential explanatory mixed methods approach, we sampled drug-relevant tweets and qualitatively examined their content. Methods We used natural language processing to determine the frequency of drug-related words in public tweets (from 2011 to 2015) among youth Twitter users geolocated to Pennsylvania. We limited our sample by age (13-24 years), yielding approximately 23 million tweets from 20,112 users. We developed a list of drug-related keywords and phrases and selected a random sample of tweets with the most commonly used keywords to identify themes (n=249). Results We identified two broad classes of emergent themes: functional themes and relational themes. Functional themes included posts that explicated a function of drugs in one’s life, with subthemes indicative of pride, longing, coping, and reminiscing as they relate to drug use and effects. Relational themes emphasized a relational nature of substance use, capturing substance use as a part of social relationships, with subthemes indicative of drug-related identity and companionship. We also identified topical areas in tweets related to drug use, including reference to polysubstance use, pop culture, and antidrug content. Across the tweets, the themes of pride (63/249, 25.3%) and longing (39/249, 15.7%) were the most popular. Most tweets that expressed pride (46/63, 73%) were explicitly related to marijuana. Nearly half of the tweets on coping (17/36, 47%) were related to prescription drugs. Very few of the tweets contained antidrug content (9/249, 3.6%). Conclusions Data integration indicates that drugs are typically discussed in a positive manner, with content largely reflective of functional and relational patterns of use. The dissemination of this information, coupled with the relative absence of antidrug content, may influence youth such that they perceive drug use as normative and justified. Strategies to address the underlying causes of drug use (eg, coping with stressors) and engage antidrug messaging on social media may reduce normative perceptions and associated behaviors among youth. The findings of this study warrant research to further examine the effects of this content on beliefs and behaviors and to identify ways to leverage social media to decrease substance use in this population.

Background Alzheimer’s disease (AD) clinical trials, even trials recruiting cognitively normal populations, require participants to enroll with a “study partner” (SP). SPs serve as knowledgeable informants, reporting on participants’ cognitive and functional performance. The SP requirement can be a barrier to research participation, especially if an older adult doesn’t have someone able or willing to enroll with them. Method Participants in this qualitative study are adults aged 60‐85 who previously signed up to participate in either the University of California, Irvine Consent to Contact Registry (C2C) or the University of Pennsylvania Brain Health Research Registry. Respondents participate in semi‐structured interviews covering: (1) social supports; (2) willingness to ask someone to be their SP; (3) whom they would ask; and (4) ways of increasing SP participation. Individuals identified as likely to be asked to be a SP are subsequently recruited to participate in semi‐structured interviews covering similar domains. Sixty potential AD trial participants and 30 potential SPs are being interviewed. All interviews are recorded, transcribed, and coded. Coding is managed with NVivo 12.0. The University of Pennsylvania IRB approved this study. Results Most respondents identify at least one person—typically a family member or close friend—who could be their SP. When identifying a potential SP, respondents consider their relationship with and personal traits of the SP, as well as the logistics of research participation. Willingness to ask that individual to fill the SP role varies. The SP role is seen as burdensome, with the relative level of burden dependent on non‐research demands on the SP’s time and attention (e.g., family and work). Respondents believe that the SP role has numerous benefits for the participant (e.g., emotional/logistical support), the SP (e.g., positive feelings), and the researchers (e.g., additional source of data). Offers of payment to the SP and flexible study visits (e.g., nights/weekends or virtual appointments) would increase willingness to ask a SP. Conclusion Our results indicate that identifying someone able and willing to serve as a SP can be challenging for older adults interested in AD clinical trials, but modifications of study design may help overcome this barrier.

Background Alzheimer’s disease (AD) secondary prevention trials typically require cognitively unimpaired individuals to learn the results of an amyloid PET scan. Additionally, they are required to enroll with a study partner who serves as a knowledgeable informant and often learns the participant’s amyloid PET scan result. The purpose of this study is to understand how study partners understand and experience the disclosure of another person’s amyloid PET scan result. Method Participants in this qualitative study are study partners of cognitively unimpaired adults aged 60–75 years who learned their amyloid PET scan result as part of Risk Evaluation and Education of Alzheimer’s Disease: The Study of Communicating Amyloid Neuroimaging (REVEAL‐SCAN; NCT02959489). The sample was recruited to be balanced on the REVEAL‐SCAN participants’ amyloid PET scan results (i.e, “elevated” or “not elevated”) and the nature of participant‐study partner relationships (i.e., spousal or non‐spousal). We have interviewed 80 study partners. All interviews were recorded, transcribed, and coded in NVivo 12.0. The University of Pennsylvania IRB approved this study. Result Most study partners knew their REVEAL‐SCAN participant’s amyloid PET scan result and were able to explain what the result meant. For example, they generally understood that an “elevated” result indicates an increased but uncertain risk of developing dementia caused by AD. Study partners most often described feeling relief after learning a “not elevated” result, while emotions after learning an “elevated” result included sadness, concern, and resignation. Study partners felt the amyloid PET scan result gave them additional insight into the REVEAL‐SCAN participant’s memory. Nearly all study partners denied that learning the amyloid PET scan result changed their relationship with the REVEAL‐SCAN participant, but they reported changing future plans (e.g., about leisure, caregiving) in light of the result. Conclusion Study partners’ understanding of and reactions to another person’s amyloid PET scan result mirror those of the person. This suggests that disclosure of AD biomarkers in clinical practice will have implications not only for patients but also for their families. Looking forward, clinicians will need guidelines for how best to disclose biomarker results, including engaging and supporting patients’ family members.

Background: In the United States, family caregivers are the cornerstone of the support system for persons living with dementia (PLWD). This study examined how the coronavirus disease 2019 (COVID-19) pandemic challenged caregivers' capacity to deliver long term care services and supports to PLWD.

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