bluuebunny/crossref_metadata_2025_split huggingface dataset:
CHOICE IN DIRECTLY-FUNDED HOME CARE
Authors: Dansereau Lisette , Kelly Christine 
Published: January 2025

Abstract
Directly funded (DF) home care, also referred to as direct payments or cash-for care, gives clients (self-managers) or unpaid caregivers (family-managers) a budget to choose their own home support services. DF research tends to be dominated by the assumption that choice is inherently beneficial, and rarely attends to the circumstances or experiences of family-managers. Using feminist care theory and Mol’s ‘logic of care’ as an analytical lens, this study aims to address this gap through a nuanced approach to the concept of choice in care services. The findings are based on focus group discussions held between June-July 2021 with 32 participants using DF home care in Manitoba, Canada. Qualitative thematic analysis was conducted to answer the question “how do DF users experience the tensions of choice, risk and responsibility?” The first theme demonstrates that choice in DF results in high quality care. The second theme illuminates some of the risks involved in exercising choice, particularly when an individual’s responsibility for coordinating formal services is unsupported. The final theme shows that family-managers tend to take on the responsibility of DF not as a first choice but as a last resort after experiencing other care options as substandard and to avoid institutional care for an older adult. We conclude that family-management in DF places new formal responsibilities on informal caregivers, often without support. We recommend reducing private responsibility in the context of DF, and identify four domains where there is potential to enhance choice in professionally-organized home care services.
INNOVATION CHARACTERISTICS AND STAKEHOLDER INCLUSION IN LTC HOMES DURING COVID-19
Authors: Santos Suzanne , Ginggeaw Sangduan , Melo Ruth , Rabello Gilciney Andrade , Zuniga Franziska , Cranley Lisa , Lepore Michael , Chu Charlene 
Published: January 2025

Abstract
The toll the COVID-19 pandemic has taken on the quality of life of those living and working in Long-Term Care (LTC) homes resulted in calls for innovation in the LTC sector. Results from the observational, experimental, qualitative and mixed-method studies (n=62) showed that 50% and 45.2% of the innovations were characterized as products and processes, respectively. Organizational innovations were reported in 4.8% of the studies. Regarding the settings, the majority (52.4%) of the studies were performed at the micro level, followed by meso (25.4%) and macro (20.6%) levels. The identified innovations were predominantly (35.5%) related to new tools for clinical care and staff education, such as online pain assessment training and the creation of virtual instruments for shared end-of-life care decisions, followed by telecommunications interventions (22.6%), generally aimed at improving connections between residents and their families. COVID-19 detection/prevention (11.3%) was the third most common innovation category in this scoping review. Participants of the studies included staff (71%), residents (56%), family members/caregivers (29%) and experts/researchers (11.3%). Only 9.7% of them included all stakeholders. The innovations implied active engagement (62.9%), where the interventions relied on stakeholder’s actions (e.g. video calls); passive engagement (22.6%), where no actions from stakeholders were needed (e.g. ambient monitoring systems) and co-designed interventions (14.5%), where participants contributed with all stages (planning, implementing, evaluating) of the innovation. Innovations in LTC homes during COVID-19 were mainly characterized as new products or processes aimed at the care of residents and staff training, which required the active involvement of stakeholders, mostly staff.
WAITING TO BENEFIT: AGE-BASED DISABILITY REGULATIONS AND PATHWAYS TO SUPPLEMENTAL SECURITY INCOME IN LATER LIFE
Authors: Freitag Callie 
Published: January 2025

Abstract
Supplemental Security Income (SSI) is an important resource for low-income older adults and people with disabilities, but it is notoriously difficult to be deemed eligible. Older SSI applicants may have an easier time getting approved. Starting at age 45, the Social Security Administration (SSA) relaxes the disability requirements for certain groups every five years until they are eliminated at age 65. If the age-based rules prevent otherwise-eligible people from receiving SSI benefits, then the consequences for this economically vulnerable group could be particularly dire. This paper has two aims. First, I estimate the SSI take-up rate by age and test whether discontinuities in SSI take-up exist when SSA disability determination rules are relaxed (at ages 45, 50, 55, and 60) and eliminated (at age 65). Second, I identify patterns of employment, homelessness, and public assistance use among SSI recipients in the five years prior to SSI take-up and examine how these patterns vary by age. I conduct these analyses with administrative microdata from multiple agencies in Washington state spanning from 2010 through 2017. I find strong evidence of discontinuous increases in SSI take-up when the disability rules are relaxed at age 55 and eliminated at age 65, suggesting the program rules may act as gatekeepers for otherwise eligible applicants. Adults face significant financial hardship in the five years prior to receiving SSI. People who took up SSI between the ages of 40 and 59 were more likely to have been homeless than employed prior to receiving SSI.
UNCOVERING THE DIMENSIONS OF WELL-BEING AMONG CAREGIVERS FOR OLDER AMERICANS IN THE NATIONAL STUDY OF CAREGIVING
Authors: Yang Frances , Roche-Dean Maria , Williams Kristine 
Published: January 2025

Abstract
Evaluating caregiver well-being is vital for healthcare providers, researchers and policymakers. There are various valid and reliable instruments for caregiver well-being with as many as 45 items in Tebb’s Caregiver Well-Being Scale. When conducting survey research it is imperative to avoid participant burden and fatigue by limiting the number of questions. The National Study of Caregiving (NSOC) is a survey about caregivers’ responsibilities, health, and well-being while caring for their older care recipients. This study focuses on identifying and reducing the complex dimensions of the 17 well-being questions to yield a streamlined, valid, and reliable caregiver well-being measure in 2022. Exploratory factor analysis (χ2=1332, df=43, p&lt;.001; RMSEA=0.1; CFI=0.96) and confirmatory factor analysis (χ2=1027, df=51, p&lt;.001; RMSEA=0.09; CFI=0.97) were conducted with 2,376 caregivers’ responses in Round 12. Twelve questions were identified with high reliability (Cronbach’s alpha (α)=0.97) to best fit a three dimensional model for caregiver well-being: 1) Positive affect (cheerful mood, calm and peaceful, full of life; α=0.94), 2) Isolation (bored, lonely, life has meaning, life is lonely because I have few close friends; α=0.93), and 3) Psychological distress (upset, felt little interest, felt down depressed, felt nervous, felt unable to stop or control worrying; α=0.93). Reducing the number of valid caregiver well-being questions by 29% has the potential to decrease survey fatigue for caregivers. The dimensions or themes identified for caregivers’ responses about their well-being allows for appropriate development of targeted interventions and policy recommendations to improve informal caregiver well-being who are caring for those aging in the US.
METHODS TO CONSTRUCT AND ANALYZE COGNITIVE FUNCTION TRAJECTORIES USING CLAIMS AND ASSESSMENT DATA
Authors: Jarrín Olga , Lin Haiqun 
Published: January 2025

Abstract
This symposium presents the methodology for construction and analysis of the cognitive function change over time during the last five years of life among Medicare beneficiaries. Understanding the changes in cognition is important in maintaining functional independence in last years of life. The first presentation explains the methodology to harmonize data from healthcare claims and clinical assessments across various post-acute and long-term care settings for Medicare beneficiaries who died in 2019, age 50 or older at death, with at least five years of continuous Medicare enrollment. Cognitive function data were harmonized to create a four-category variable: no impairment, memory loss, mild cognitive impairment (MCI), and dementia/severe cognitive impairment. The second presentation examines change in cognitive function over the last five years using the group-based trajectory model for ordered categorical outcomes, revealing ten cognitive function trajectory groups. Sociodemographic and clinical factors were assessed for their association with the trajectories and used to predict trajectory class clusters with machine learning algorithms. The third presentation presents a novel application of the three-step Bolck-Croon-Hagenaars (BCH) method with mixed-effects group-based trajectory model to account for the individual heterogeneous effects, and assess the association between the group membership and risk factors. The fourth presentation leverages the strengths of real-world data for nearly two million Medicare beneficiaries to unpack within-group racial/ethnic and sex differences in cognitive function trajectories and their predictors with discussion from a life-course perspective. Collectively, these methods and findings advance our understanding of differential late-life cognitive decline patterns, informing future etiological and intervention studies.
TESTING THE EFFECTS OF COGNITIVE TRAINING ON ALZHEIMER’S DISEASE AND RELATED DEMENTIAS: THE MODERATING ROLE OF SDOH
Authors: Rebok George , Clay Olivio , Wallace Gail , Ball Karlene , Thorpe, Jr. Roland , Marsiske Michael , Felix Cynthia , Willis Sherry 
Published: January 2025

Abstract
The Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) study is the largest randomized clinical trial of the efficacy of cognitive training (memory, reasoning, processing speed) in improving both cognitive abilities and everyday functioning in normal older adults (N = 2,802; age M = 73.6, range 65-94 years; 76% female; 26% African American), with follow-ups extending through 10 years, and additional follow-ups on claims-based dementia diagnosis through 20 years post-intervention. This presentation considers not only training focus (cognition, exercise) but also a) subjects’ individual differences in social context variables like social determinants of health (SDoH) and b) Alzheimer’s Disease and Related Dementias (ADRD) as training outcome. Overall, we found fewer significant effects of SDoH as moderators of cognitive training effects on diagnosed dementia than we expected, indicating cognitive training was beneficial for individuals across the continuum for most domains of SDoH (e.g., education access, economic stability, neighborhood and built environment, health care access, social and community context). Participants obtained a greater degree of protection from ADRD through cognitive training when they had higher scores for domains associated with health care access (HRs.68 to.75) and more education (HRs.75 to.76). Higher scores on neighborhood and built environment were also associated with lower ADRD risk (HRs.69 to.70). Future work should continue to explore culturally tailored training interventions alone and in combination with physical exercise and environmental modifications such as improved healthcare access to reduce ADRD risk associated with SDoH that disproportionately affects racially diverse aging populations.
BEYOND THE MARGINS: INTIMATE PARTNER VIOLENCE AND TRANSGENDER OLDER ADULTS’ HEALTH AND WELL-BEING
Authors: Hoy-Ellis Charles , Jung Hailey , Cook-Daniels Loree , Kim Hyun-Jun , Fredriksen-Goldsen Karen 
Published: January 2025

Abstract
Transgender older adults experience disproportionate violence and abuse, increasing their risk for deteriorating physical health, disability, depressive symptoms, and elevated stress levels when compared with their non-transgender age-peers. Studies have shown that barriers like fear of seeking healthcare, insufficient physical activity, internalized stigma, experiences of victimization, and a lack of social support play indirect roles in negatively impacting the health of this group, which has historically faced marginalization and neglect. According to the Health Equity Promotion Model, stigma and victimization significantly impact the mental health of older transgender adults. This study seeks to explore the connections between intimate partner violence (IPV), victimization, social resources, and mental health outcomes within this population. By analyzing cross-sectional data from a national survey involving lesbian, gay, bisexual, and transgender adults aged 50 to 95 years (N = 2,560), we found that transgender respondents (n = 167) experienced IPV at over double the rate of their non-transgender lesbian, gay, and bisexual counterparts (16% vs. 7%). Among transgender individuals, IPV strongly correlates with increased victimization and internalized stigma. IPV significantly predicted mental health quality of life and depressive symptomatology, independent of lifetime discrimination and victimization. Additional significant predictors of mental health outcomes were social network and support. Given the recent and continuing policy shifts nationwide affecting the transgender community, initiatives aimed at stigma reduction, victimization prevention, and bolstering social support are crucial for improving the health and overall well-being of transgender older adults. Insights from this research can guide stakeholders in countering regressive policies and legislation.
PREDICTORS AND IMPLICATIONS OF GENERATIVITY AMONG LGBTQ+ OLDER ADULTS
Authors: Jung Hailey , Kim Hyun-Jun , Emlet Charles , Fredriksen-Goldsen Karen 
Published: January 2025

Abstract
Generativity is a concern, commitment, and action for others including the next generation, and has been shown positively associated with the health and well-being of older adults. Since LGBTQ+ older adults have experienced overt marginalization and often have limited contact with younger generations, generativity may resonate with unique implications in LGBTQ+ communities. Yet, to date research on generativity with this community is lacking. In this paper, we integrate Generativity Theory and Health Equity Promotional Model (HEPM) to examine the predictors of generativity among LGBTQ+ older adults and explore key psychological and social factors that moderate the relationship between stigma experiences and generativity. Using the 2016 data from Aging with Pride: National Health, Aging, and Sexuality/Gender Study (N = 2,233), we regressed generativity in three blocks; first, social location and stigma variables, next, psychological resources, and lastly, social resources. The predictive power of the model significantly improved in each step. Psychological resources (i.e., mastery, resilience, and critical awareness) and social resources, (i.e., social participation, network size, social support, and LGBTQ+ community engagement) were all positively associated with generativity. In terms of moderating effects, day-to-day discrimination no longer had negative effects on generativity when experienced by older adults with higher levels of critical awareness. Interestingly, lifetime discrimination had positive effects on generativity for individuals with higher mastery levels. Findings suggest psychological and social mechanisms that may foster fortitude and stress-related growth among LGBTQ+ older adults. This research provides valuable insights to foster intergenerational relationships and cultivate strengths in the LGBTQ+ community.
BRIDGING ACCESS GAPS: EXAMINING USE OF DIGITAL HEALTH TECHNOLOGIES AMONG SEXUAL AND GENDER MINORITY OLDER ADULTS
Authors: Romanelli Meghan , Kim Hyun-Jun , Fredriksen-Goldsen Karen 
Published: January 2025

Abstract
LGBTQ older adults face distinct challenges accessing healthcare. Digital health solutions offer responsive approaches that broaden availability of health information and care, especially for those experiencing isolation, discrimination, and barriers to care. While some LGBTQ older adults prefer digital health technologies, others face difficulties with electronic literacy that prevent use. The current study examined the association of sexual and gender identity and health access factors (barriers to care; health literacy; help-seeking beliefs; healthcare discrimination) with past 12-month use of digital health technologies for communication, insurance matters, and health-information seeking. Data were analyzed from the 2015 healthcare access module of Aging with Pride: National Health, Aging, and Sexuality/Gender Study (NHAS) (N=2,322). Results indicated digital health use varied across LGBTQ older adult subgroups and access factors. Transgender older adults, compared to cisgender, were more likely to use each digital resource to manage their health and healthcare. Participants with experiences of healthcare discrimination more likely communicated with their providers online, while those with lower health literacy turned to the internet to find health information. Older cohorts (65-79; 80+), poverty-impacted, and Black and Hispanic participants were less likely to use digital resources. Digital health technologies may enhance healthcare access for LGBTQ older adults, potentially bridging gaps in service availability and acceptability. This is particularly evident for certain LGBTQ subpopulations such as transgender older adults and those facing greater barriers to care and discrimination. It remains imperative to create digital access and address literacy needs among older cohorts and LGBTQ communities with multiple marginalized identities.
A NOVEL TIME USE APPROACH ON SUCCESSFUL AGING: RACIAL AND GENDER DISPARITIES IN DAILY PRODUCTIVE ENGAGEMENT
Authors: Wong Jason , Lu Siyao , Lou Yifan , Zang Emma , Carr Deborah 
Published: January 2025

Abstract

Background and Objectives
Productive engagement (PE) represents a potential pathway toward successful aging (SA). Using time diary data, this study explored how U.S. older adults structure their daily lives in different productive roles, the impacts of these roles on one specific dimension of SA (self-rated health), and the extent to which these patterns differ by race and gender.

Research Design and Methods
We use data from the American Time Use Survey (n = 17,990) and sequence and cluster analyses to identify distinctive daily PE time-use patterns. Multivariable linear regression models were used to evaluate associations between these patterns and self-rated health, and the moderating roles of race and gender.

Results
Five PE clusters were identified: Low Degree of PE (29%), Moderate Unpaid Work & Light Social Participation (42%), Persistent Unpaid Work (12%), Persistent Paid Work (9%), and Persistent Social Participation (7%). White women were the most likely, while Black men were the least likely to have any PE. All PE clusters were positively associated with self-rated health, compared to “Low Degree of PE”. The strongest positive association was observed for “Persistent Paid Work,” especially for women. Racial differences were more prominent among women than men. The health benefits of PE were less pronounced among Black women than White women.

Discussion and Implications
The positive association between PE and self-rated health varies across race-gender groups. Future research should consider the persistent structural barriers that may prevent older adults with disadvantaged backgrounds, particularly Black women, from benefiting from PE and experiencing SA.
EXPLORING SERIOUS ILLNESS CARE EXPERIENCES AMONG BLACK CHICAGOANS’ CAREGIVERS: A QUALITATIVE INQUIRY
Authors: Wilder Jocelyn , Draw Kandis , Downing Kimberly 
Published: January 2025

Abstract
Palliative and hospice services have shown tangible evidence of enhancing the quality of life, decreasing the likelihood of depression, and extending survival for those receiving palliative care. Black individuals receive referrals later and are less likely to utilize palliative and hospice care; national data estimated that only 7.6% of hospice patients were Black. This qualitative study investigates the nuanced perspectives on serious illness care among Black Chicagoans through focus groups and in-depth interviews. Employing an inductive thematic approach, we explored the knowledge, attitudes, and beliefs to understand the intricate cultural, familial, and healthcare dynamics that influence serious illness care experiences among caregivers. Our findings reveal diverse and complex narratives surrounding end-of-life care, reflecting the intersection of race, familial expectations, and healthcare systems. Participants shared moving experiences with family and health care providers, shaping their attitudes towards hospice and palliative care. Discussions highlighted limited knowledge of available services regarding access to and utilization of end-of-life care resources. Thematic analysis identified several key domains, including quality of care, decision-making related to death and dying, and the role of race, highlighting the importance of culturally competent care. These findings underscore the need for healthcare providers to adopt culturally sensitive approaches. This research illuminates the diverse perspectives and experiences within Black communities and informs the development of culturally responsive end-of-life care strategies. Our study contributes to a deeper understanding of the unique challenges and opportunities in providing quality end-of-life care for Black individuals and families.
BEING BOLD: USING PUBLIC HEALTH AWARDS TO CHANGE STATE DEMENTIA POLICY
Authors: Rhodes Annie , Staton Ashley , Bluestein Daniel , Ivey Kimberly , Coney Rachel , Price Andrea , Sargent Lana , Miller Melicent 
Published: January 2025

Abstract
The BOLD Act (Building Our Largest Dementia Infrastructure) was passed by the United States Congress on December 31st, 2018, to support state health departments with dementia-friendly and healthy brain activities. In Virginia, the Virginia Department of Health (VDH) awarded the Virginia Center on Aging a BOLD sub-award to create an epidemiologic registry to catalog dementia, neurodegenerative disorders, and caregiving cases. Registries are a valuable but underused strategy for an equitable public health response to brain health promotion and to monitor trends in dementia and neurodegenerative disorders. The Virginia registry, known as the “Virginia Memory Project” (VMP), is only the 4th statewide dementia registry in the United States. In 2024, the Virginia State legislature unanimously voted to pass HB 1455, establishing the VMP into state law and codifying a dementia and caregiving registry in Virginia. A key outcome and sustainability strategy of launching the VMP was creating a framework to influence policy at the state level to infuse public policy with evidence-based resources, education, and impact for dementia, caregiving, and neurodegenerative disorders. The VMP is unique among epidemiologic dementia registries because it is a responsive registry that offers patients, caregivers, and persons with undiagnosed memory concerns linkage to information, services, and support. In this session, we will discuss the framework we used as an academic-public partnership to launch the VMP and how researchers can use grant funding as an advocacy mechanism to influence policy, ultimately supporting brain health and caregivers.