bluuebunny/crossref_metadata_2025_split huggingface dataset:
Variation in Survival After Dementia Diagnosis by Sex, Race/Ethnicity, and Geography
Authors: Lopez Maria J. , Lin Haiqun , Zafar Anum , Kim Hyosin , Xia Weiyi , Montaner Olga F Jarrín 
Published: January 2025

AbstractBackgroundDramatically varying estimates of survival time following an initial diagnosis of Alzheimer’s disease and other dementias have been reported across different studies. The prevalence of dementia increases with age while survival time decreases with increasing age at diagnosis. This study aimed to investigate how survival time after a diagnosis of dementia varies by sex, race/ethnicity, and age at time of diagnosis.MethodA retrospective analysis of the Centers for Medicare & Medicaid Services Chronic Conditions Warehouse 100% Master Beneficiary Summary File was conducted for Medicare beneficiaries aged 50 and older who died in 2019 and had a dementia diagnosis date (n = 884,548). Survival time in years and associations with sex, race/ethnicity, age at diagnosis, clinical and sociodemographic factors, and state of residence were investigated. Descriptive statistics, generalized gamma regression survival‐time models, and Kitagawa‐Blinder‐Oaxaca decomposition of racial/ethnic differences were conducted.ResultAmong the 2019 Medicare decedents with dementia, the median survival time in years was shorter for American Indian/Alaska Native (AIAN) (2.7, IQR 0.8‐6.0) and White (2.9, IQR 0.8‐6.3) beneficiaries, and longer for Black (3.4, IQR 0.9‐7.4), Asian American/Pacific Islander (AAPI) (3.6, IQR 1.1‐7.8), and Hispanic (3.8, IQR 1.1‐8.5) older adults. Median survival time also varied by sex and age at dementia diagnosis. Hispanic and AAPI females diagnosed with dementia before age 80 had a median survival time exceeding 6 years after a dementia diagnosis. Median survival time also varied by geographical region and was notably longest for female Hispanic decedents in Puerto Rico (9.0, IQR 2.5‐14.7). Using the Kitagawa‐Blinder‐Oaxaca modeling decomposition approach, clinical and sociodemographic predictors fully explained the difference in survival time between White, Black, and AIAN individuals; however, more than half of the difference in longer survival time for Hispanic and AAPI individuals was unexplained.ConclusionHispanic and AAPI older adults live significantly longer after receiving a diagnosis of dementia compared to White, Black, and AIAN older adults. Unexplained differences may be associated with cultural factors, family and social support systems, healthcare access and utilization, environmental factors, and differences in diagnosis rates and timing of diagnosis.
Construction of the Cognitive Function Trajectory File
Authors: Zafar Anum , Lin Haiqun , Kim Hyosin , Xia Weiyi , Lopez Maria J. , Montaner Olga F Jarrín 
Published: January 2025

AbstractBackgroundCharacterizing changes in cognitive function during the last years of life is vital for providing appropriate care, supporting quality of life, and planning for future demands on our medical and social resources. The aim of this project was to construct a cognitive function trajectory file spanning the last five years of life to better understand common patterns of cognitive aging.MethodThe analytic cohort included 2019 Medicare decedents, aged 50 or older at death, with five years of continuous enrollment before death (n = 1,952,408). We extracted and harmonized cognitive function data elements from Medicare fee‐for‐service claims, encounter file, assessment, and Medicaid data during 2014‐2019. The data elements used for harmonization included ICD‐9 and ICD‐10 codes, the Brief Interview for Mental Status, and other cognitive function assessment items. We created a four‐category indicator for cognitive function: no impairment, memory loss, mild cognitive impairment (MCI), and dementia/severe cognitive impairment. Similar to our approach to creating the care trajectory file, the cognitive function trajectory file was expanded at day‐level and then collapsed quarterly (3‐month) basis for the last five years of life (20 quarters). We employed a thorough carry‐forward method to address gaps in information.ResultUsing the information from combined assessment and claims, at death 69% of individuals aged 90 and older had dementia and 13% had MCI, and among individuals age 80‐89, 56% had dementia and 14% had MCI. Females had greater cognitive impairment at death (56% dementia, 14.4% MCI) compared to males (44.5% dementia, 15% MCI). Cognitive function at the end of life was similar across racial and ethnic groups: White (50.4% dementia, 15.1% MCI); Black (52.3% dementia, 14.7% MCI); Hispanic (51.43% dementia, 12.1% MCI); Asian American/Pacific Islander (AAPI) (52.7% dementia, 13.1% MCI); American Indian/Alaska Native (43.6% dementia, 15.2% MCI).ConclusionThe successful construction of this analytic file allows for the exploration of varying patterns of cognitive functional decline and their multi‐level predictors including individual, community, societal, and environmental factors. This approach can also be applied in research for development of new dementia care strategies and risk‐ and protective factors associated with cognitive decline.
Health Services Use and End‐of‐Life Outcomes Among People with Dementia and Multiple Chronic Conditions
Authors: Kim Hyosin , Lin Haiqun , Zafar Anum , Lopez Maria J. , Xia Weiyi , Montaner Olga F Jarrín 
Published: January 2025

AbstractBackgroundIndividuals with dementia often have one or more chronic conditions, and the disease burden and care experience may differ based on the plurality of chronic conditions. We aim to describe the individual characteristics, health care use, and place of death for individuals with dementia and multiple comorbidities.MethodA retrospective cohort of individuals who died in 2019 with dementia, and were continuously enrolled in Medicare for at least three years. We constructed a database summarizing health services utilization during the last three years of life and end‐of‐life outcomes by harmonizing inpatient and hospice claims, and assessment data from post‐acute and long‐term care settings. Individuals were categorized by number of comorbidities. Bivariate association analyses were performed to assess the statistical differences in the variables of interest by comorbidity levels.ResultBeneficiaries with dementia (n = 933,618) had a median of seven additional comorbidities [IQR 5‐8]. Fifteen percent had three or fewer comorbidities. Those with four or more comorbidities were significantly more likely to be hospitalized (85% vs. 67%), admitted to a nursing home (66% vs. 51%), and use home health care (56% vs. 49%) during the last three years of life compared to those with fewer comorbidities. Inpatient death without hospice (29% vs. 18%) was higher among those with four or more comorbidities compared to those with fewer comorbidities. A greater use of hospice was observed within beneficiaries with three or less comorbidities in addition to dementia (71% vs. 62%).ConclusionIndividuals with dementia and more than four additional chronic conditions used more health care services in both inpatient and home care settings, while they underutilized hospice services at the time of death compared to those with fewer chronic conditions. Policies aimed at enhancing access to home‐ and community‐based services for individuals with dementia and multiple comorbidities have the potential to enhance end‐of‐life care experiences and contribute to care quality for people living with dementia and support for their family caregivers.
Association between the social exposome and vascular brain injury in brain bank donors
Authors: Keller Sarah A. , Powell W. Ryan , Buckingham William R. , DeWitt Amanda , Bendlin Barbara B. , Kind Amy J.H. 
Published: January 2025

AbstractBackgroundThe social exposome, all social‐environmental exposures accumulated over the life course, could partially explain Alzheimer’s disease and other dementias (ADRD) disparities. Measurement and linkage of life course social exposome metrics to biological samples may inform opportunities for intervention. While there is increasing emphasis on the life course social exposome in ADRD research, there is little consensus on its measurement. Vascular brain injury (VBI) is a measure of changes in the cerebral blood vessels associated with increased risk of ADRD, but the extent to which social exposures are associated with VBI is unknown.MethodWe evaluated the association between life course social exposome measures and the VBI burden acrosstwo Alzheimer’s Disease Research Center (ADRC) brain banks. Geocoded life course donor addresses were linked to time‐concordant national Area Deprivation Index (ADI) rankings, with greater ADI denoting greater county‐level disadvantage. Life course social exposome was examined separately as 1, a cumulative measure of the number of years spent above the population median life course ADI, and 2, the change in ADI from youth to adulthood. The outcome was the presence of any of four VBI indicators: infarcts, microinfarcts, hemorrhages, and white matter rarefaction. The association of life course social exposome to VBI burden was evaluated via logistic regression adjusting for sex and age at death.ResultThis sample contained 740 donors from two brain banks. The population median ADI was 7.08 (IQR, 5.5) and the mean number of years spent above this threshold was 19.95 (SD, 20.89). More years living in a county above the population median was associated with increased VBI burden (OR, 1.04, 95% CI, 1.03‐1.05). A median ADI which increased (OR, 3.67, 95% CI, 3.65‐3.70) or remained stably high between youth and adulthood (OR, 3.08, 95% CI, 3.01‐3.14) resulted in increased odds of VBI burden.ConclusionThis study shows promise for clarifying the relationship between the social exposome and ADRD brain pathology post‐mortem. We found associations between higher life course ADI (greater disadvantage) and VBI burden. Identifying dosages and timing of life course exposures critical for development of VBI allows for future intervention to reduce disparities in ADRD.
Public data tracing: A novel method for retrospectively collecting occupational data for brain bank research donors
Authors: Otte Rachel C. , Etter Lauren , Surovell Elliot I. , Lim Sarah , Pfaff Aly , DeWitt Amanda , Sharrow Jessica , Salamat Shahriar , Zuelsdorff Megan L. , Rissman Robert A. , Bendlin Barbara B. , Kind Amy J.H. , Powell W. Ryan 
Published: January 2025

AbstractBackgroundWorking conditions and contexts may influence the development of Alzheimer’s Disease and related dementias (ADRD), exposing individuals to modifiable risk factors across their life. Measurement of ADRD pathology at autopsy provides a gold standard outcome for evaluating the effects of lifetime exposures, but approaches to quantify ante‐mortem work exposures are limited. Here we describe a new method to retrospectively capture occupational histories by systematically extracting occupational information using archival public records— i.e., public data tracing—and provide preliminary feasibility for ongoing data collection for two ADRC brain bank cohorts.MethodsOur sample includes individuals donating to two ADRC brain banks between 1986‐2018 who had residential histories previously constructed and are part of ongoing efforts to build occupational histories (n = 651 of a planned 1154). They had a mean age at death of 81.7 (SD = 10.3) years, were 51.9% (n = 338) female, and had a median year of birth = 1926 and median year of death = 2012. Quantifying occupational exposure entails systematic searches of archival collections available in‐person and online (e.g., Ancestry.com) to locate records (Figure 1). Two researchers independently verified the identity and content of public records using the Genealogical Proof Standard. Data collection occurred from June‐December 2023.ResultsWe identified an average of 10.7 (SE = 0.28) records with occupational information per donor with an average 1.29 (SE = 0.02) hours spent extracting and validating each donor’s occupational history. The most common public record types included: federal censuses (≥1 record for 70.5% of donors), city directories (70.2%), obituaries (62.6%), newspapers (58.3%), yearbooks (40.1%), military records (27.7%), marriage records (6.9%), and voter registrations (6.2%), which varied by time (Figure 2). In addition, we found the number of public records varied by sex, with more records containing occupational information identified for males (14.2 average records) compared to females (7.2).ConclusionsPreliminary findings suggest that applying public data tracing methods to collect occupational information is feasible. There are both limitations and opportunities, particularly as public record availability seems to vary by time (both calendar and lifecourse) and donor sex. This new method quantifies occupational exposures over the lifecourse, creating new opportunities to study the relationship between work and ADRD brain health.
Neighborhood racial income inequality and ADRD risk
Authors: Zahodne Laura B. , Sol Ketlyne , Scambray Kiana A. , Lee Ji Hyun , Palms Jordan D , Morris Emily P. , Taylor Lauren , Ku Vivian , Lesniak Mary , Melendez Robert , Elliott Michael R , Clarke Philippa 
Published: January 2025

AbstractBackgroundNeighborhood conditions and their racial patterning represent under‐studied factors that could contribute to racial disparities in dementia risk. Neighborhood socioeconomic status (SES) has been linked to dementia, but the racial distribution of SES within a neighborhood may also matter for dementia risk.MethodIndividual‐level data from 460 (47% Black, 46% White, 7% other) older adults from the Michigan Cognitive Aging Project (Table 1) were linked to census tract‐level data from the National Neighborhood Data Archive. Neighborhood SES was operationalized as composite measures of neighborhood disadvantage and neighborhood affluence. Neighborhood racial income inequality was operationalized as the ratio of median incomes for White versus Black residents. Generalized estimating equations accounting for geographic clustering examined associations between neighborhood factors and performance on a comprehensive neuropsychological battery, adjusting for individual‐level (age, gender, race/ethnicity, education, income) and neighborhood‐level (population density, proportion of Black residents) covariates.ResultNeighborhood racial income inequality was uniquely associated with worse cognitive health across multiple domains (Table 2, Figure 1), and these associations did not differ by participant racial identity. Neighborhood disadvantage was only associated with worse cognitive health among Black participants (p’s < .007).ConclusionBoth overall neighborhood SES and racial inequities in the distribution of economic resources within neighborhoods are associated with dementia risk independent of individual‐level SES and other characteristics of the neighborhood. Findings highlight potential negative cognitive impacts of structural racism on a community that may be universal. Racial differences in both the level of neighborhood disadvantage and the strength of its associations with cognitive health (i.e., differential impact) likely contribute to racial inequalities in dementia. Future work should characterize mechanisms underlying these effects, as well as develop and test policies and interventions to improve neighborhood conditions and dismantle structural racism in order to promote health equity.
Social Engagement is associated with better cognition in Quilombola Communities: Insights for Engaging underserved Brazilian Populations in Alzheimer’s Disease Research
Authors: Simon Sharon Sanz , Cappi Carolina , Junior João de Deus Cabral , Alves Gilberto Sousa , de Oliveira Bruno Luciano Carneiro Alves 
Published: January 2025

AbstractBackgroundQuilombos are settlements founded by descendants of runaway slaves in Brazil, typically located in remote rural areas. Quilombola communities typically present poor basic sanitation and health, high levels of illiteracy, and limited access to social and health services, especially among older adults. Therefore, the Quilombola population is socially vulnerable and likely to present an increased risk for dementia, although underrepresented in aging/dementia research. Future research is needed to map dementia risk factors in this population. The present study aims to investigate the association between cognition and socio‐cultural engagement, potentially protective for dementia.MethodThis study is part of the Population Survey of the Living Conditions and Health Status of Older Persons Living in Quilombola Communities in the Baixada Maranhense (IQUIBEq) project, a cross‐sectional household survey conducted in 11 Quilombola communities in Maranhão (Brazil). The study comprised 221 older adults (60‐104 years), selected in partnership with local social services and community health workers. Participants completed a health survey and a cognitive screening (Mini‐Mental State Examination). Demographics, cardiovascular risk factors (waist‐to‐hip ratio and BMI), cognitive performance, and social engagement were described. Regression analysis examined the association between social engagement and cognition. Our models controlled for age, sex, race, education, family income, and cardiovascular risk factors. We also examined if sex and age moderated the association observed.ResultHigher social engagement is associated with better cognition (p <.001) above and beyond demographics and cardiovascular risk factors. We observed the social activities that mostly drove our results were attending community meetings (e.g., community movements or resident associations) and attending religious/faith services. Moreover, age and sex did not moderate the association between social engagement and cognition.ConclusionSocial engagement may be a key aspect of cognitive/brain health in the Quilombola population, a group that faces poor life conditions. Social engagement may not only provide social/emotional support among the community members but can facilitate access to basic needs (e.g., housing, sanitation). Other potential mechanisms are the cognitive stimulation present in social interactions and the effects of spiritual/faith/religious engagement. Although the results are limited by the cross‐sectional design and survival bias, they may inform public health strategies in underserved populations.
Natives Engages in Alzheimer’s Research (NEAR)
Authors: Bogic Marija 
Published: January 2025

AbstractBackgroundThe Native Hawaiian/Pacific Islander (NHPI) and American Indian/Alaska Native (AI/AN) populations are rapidly aging but there is limited data on Alzheimer’s disease and related dementias (ADRD). Despite the high prevalence of ADRD risk factors, the healthcare systems serving these communities are inadequately equipped to address the economic and social impact of ADRD. NEAR aims to reduce ADRD‐related health disparities by collaborating with a wide network of community and academic partners to gain a better understanding of the disease, implement interventions, and mitigate its impact on these communities.MethodNEAR is the only P01 focusing on AI/ANs or NHPIs and ADRD‐related health disparities since the NIA began documenting P01s in 1984. Based at Washington State University, NEAR includes collaborators from the University of Miami, Brigham Young University, University of Hawai`i, University of Washington, University of Minnesota, and University of Colorado, along with 35 community partners. The program consists of 3 culturally‐informed projects, supported by an Administrative Core, Recruitment and Engagement Core, Biospecimen Core, and Research Methods Core. Notably, NEAR involves 12 AI/AN or NHPI scientists and all Projects and Cores are led by a Native researcher. Indians Transforming Alzheimer’s Care Training is a group‐randomized trial to improve ADRD diagnosis and care for AI/AN elders through culturally‐informed provider training. ‘IKE Kupuna is a randomized controlled trial testing the effectiveness of Hula in preventing cognitive decline in NHPI elders. Cognition After Obstructive Sleep Apnea Treatment Among Native American People is an observational study that screens for obstructive sleep apnea and cognitive impairment on 2 reservations, followed by a trial of motivational interviewing to improve adherence to sleep apnea treatment and improve or preserve cognitive function.ResultThere are no results since this is a grant abstract.ConclusionThe decentralized model and collaboration with a diverse group of AI/AN and NHPI scientists, along with world‐class ADRD experts, has enabled NEAR to create unique scientific resources and a large network of academic and community partnerships. This integrated effort holds great promise for improving the diagnosis and quality of ADRD care while advancing the scientific field.
Exploring users' perspectives of the Driving and Dementia Roadmap
Authors: Naglie Gary , Stasiulis Elaine , Rapoport Mark J. ,   CCNA Driving Cessation Team Co‐Investigators and CCNA Study Group
Published: January 2025

AbstractBackgroundSince October, 2022 the Driving and Dementia Roadmap (DDR) (www.drivinganddementia.ca) – an online resource to support people with dementia (PWD), family/friend carers (FCs) and healthcare providers (HCPs) as they navigate the challenges of driving cessation – has been accessed by over 34,000 users. To understand the DDR’s impact we are conducting on‐going surveys to explore users’ perspectives of the DDR.MethodAs users exit the DDR, they are invited, via pop‐up message, to participate in an online survey about their experiences with the DDR, including their perceived new knowledge and confidence gained due to using the DDR and their satisfaction with it. Descriptive statistics were conducted via the REDCap platform.ResultTo date, 81 DDR users have participated in the survey (17 PWD, 33 FCs and 31 HCPs). Topics rated the highest as “new knowledge gained” included: for PWD, “recognizing unsafe driving” (17.6%) and “getting around without driving” (17.6%); for FCs, “recognizing unsafe driving” (59.4%) and “learning about licensing and reporting” (59.4%); and for HCPs, “providing support after driving cessation” (61.3%) and “having discussions and managing emotions” (45.2%). With regards to increases in confidence reported as “somewhat” to “much more confident”, the highest rated topics included: for PWD, “making the decision to stop driving” (47.1%) and “recognizing unsafe driving” (41.2%); for FCs, “making the decision to stop driving” (71.9%) and “initiating conversations about driving cessation” (68.8%); and for HCPs, “managing the emotional impact” (71.1%) and “having conversations about driving cessation” (67.7%). Satisfaction levels by participants across all DDR characteristics were rated as “satisfied” to “very satisfied” by at least 47% of PWD, 87% of FCs and 80% by HCPs, with “trustworthiness of the information” rated the highest by all three groups (PWD: 75.1%; FCs: 93.8%; HCPs: 87.1%).ConclusionEarly results indicate that a majority of users were satisfied with the DDR and using the DDR led to gains in new knowledge and increased confidence in managing aspects of driving cessation for all 3 groups, but least so for PWD. The next step will involve in‐depth interviews with participants to better understand the user experience and the relatively lower ratings among PWD.