"A Raw Blessing" - Caregivers' Experiences Providing Care to Persons Living with Dementia in the COVID-19 Pandemic.

The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.

Family members' perspectives on learning cognitively unimpaired older adults' amyloid-ß PET scan results.

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-ß 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-ß 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.

Disclosing Genetic Risk of Alzheimer's Disease to Cognitively Unimpaired Older Adults: Findings from the Study of Knowledge and Reactions to APOE Testing (SOKRATES II).

BACKGROUND: Current practice guidelines recommend against Apolipoprotein E (APOE) testing. However, advances in Alzheimer's disease (AD) research and care 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.

Exploring Substance Use Tweets of Youth in the United States: Mixed Methods Study.

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.