bluuebunny/crossref_metadata_2025_split huggingface dataset:
Formal Care Providers Experiences with Indigenous Understandings of the Stages of Dementia in Diverse Indigenous Communities in Canada and the United States
Authors: Jacklin Kristen , Blind Melissa J , Ketcher Dana , Warry Wayne , Lewis Jordan P. , Dertinger Melinda , Arredondo Brandylyn , Pederson Collette , Johnson January , Trudeau Rhonda , Pitawanakwat Karen , Strong Lois , Summers Marlene , Martin Wesley , Lambrou Nickolas H. , Zuelsdorff Megan , Gleason Carey E. 
Published: December 2023

AbstractBackgroundThis paper explores Indigenous understandings of the progression of dementia through the early/mild, middle/moderate, and late/severe stages of dementia through the experience of on‐reservation dementia care providers. There is scant but growing literature on Indigenous understandings of dementia but to our knowledge none have examined how Indigenous conceptualization of the illness stages relate to the biomedical staging categories which dominate dementia education and care models.MethodWe conducted sequential focus groups (SFGs) with the same local health care staff/formal caregivers that work with Indigenous older adults (n = 17) over 4‐5 sessions (n = 14) in four diverse Indigenous reservation communities in USA and Canada. The SFG design provided an opportunity for a progressive and deep discussion of perceptions of early, middle, and late stages of dementia among their Indigenous patients. SFGs were recorded, transcribed, thematically coded and grouped according to the Alzheimer’s Association (AA) definitions of early, middle, and late‐stage dementia.ResultThese data suggest that Indigenous experiences with the stages of dementia do not align with the AA framework. Specifically, early dementia is not widely recognized as an illness or part of the disease trajectory; rather, moderate symptoms in the AA framework are most frequently described as the beginning of dementia. Participant descriptions of symptoms in the middle and late stages were more closely aligned with Indigenous lived experience and beliefs. Significantly, a return to childhood or infancy was widely used to describe late‐stage dementia. Participant discussions revealed that they gave prominence to periods of transitions and the overall experience as opposed to a segmented/staged approach.ConclusionIndigenous dementia illness models may not align with biomedical approaches to disease staging, potentially leading to inappropriate and ineffective clinical conversations and dementia education efforts. For example, while infantilization of elderly individuals is usually advised against by professionals, describing a loved one as returning to an earlier stage of their life aligns with Indigenous teachings of the circle of life. Further ethnographic research is needed with Indigenous family caregivers and persons living with dementia to verify these findings and provide insight into culturally safe care.
Diurnal cortisol, neuroinflammation, and neuroimaging visual rating scales in memory clinic patients
Authors: Holleman Jasper , Daniilidou Makrina , Kåreholt Ingemar , Matton Anna , Aspö Malin , Hagman Göran , Udeh‐Momoh Chi T. , Kivipelto Miia , Solomon Alina , Sindi Shireen 
Published: December 2023

AbstractBackgroundNeuroinflammation is considered a hallmark of the Alzheimer’s disease (AD) pathogenic process. Dysregulations in stress hormones (cortisol) may increase AD risk and are related to brain atrophy. This cross‐sectional study aims to examine interactions of cortisol patterns and neuroinflammation markers in their association with neuroimaging correlates.Method188 participants were recruited from the Karolinska University Hospital memory clinic (Stockholm, Sweden), and underwent magnetic resonance imaging or computed tomography. Four visual rating scales were applied to the scans: medial temporal lobe atrophy (MTA), global cortical atrophy (GCA), white matter lesions (Fazekas), and posterior atrophy (Koedam). Additionally, participants provided saliva to assess diurnal cortisol patterns, and underwent lumbar punctures for cerebrospinal fluid (CSF) sampling. Five cortisol measures were used: awakening levels, bedtime levels, cortisol awakening response (CAR), total daily output, and the ratio of awakening to bedtime levels (AM/PM ratio). Nineteen CSF neuroinflammation markers were categorized into five composite scores (mean z‐scores): proinflammatory cytokines (Interleukin (IL‐)6, IL‐8, IL‐15, IL‐12/IL‐23 p40, CC chemokine ligand (CCL)4, CXC chemokine ligand 10), other cytokines (IL‐5, IL‐16, CCL17), angiogenesis markers (Vascular endothelial growth factor (VEGF), VEGF‐D, VEGF‐receptor 1, Placental growth factor), vascular injury markers (Serum amyloid A, C‐reactive protein, Vascular cell adhesion molecule‐1, Intercellular adhesion molecule‐1), and glial activation markers (YKL‐40, CCL2). Ordinal logistic regressions were conducted to assess associations between cortisol patterns, neuroinflammation scores, and visual rating scales, and interactions between cortisol patterns and neuroinflammation composite scores in predicting visual rating scales.ResultHigher levels of angiogenesis markers were associated with greater odds of more severe white matter lesions. Furthermore, awakening cortisol levels, bedtime levels, CAR, and total daily output independently interacted with ‘other cytokines’ scores to predict MTA, CAR and total daily output independently interacted with ‘proinflammatory cytokines’ scores to predict white matter lesions, and the AM/PM ratio interacted with angiogenesis markers to predict GCA. No associations were found between cortisol patterns and visual rating scales.ConclusionThis study provides evidence for potential interplay between diurnal cortisol patterns and neuroinflammation. While this study does not provide information on causality, these findings suggest that neuroinflammation is involved in the pathway between chronic stress and AD.
Empowering Youth Carers of a Parent with Younger‐Onset Dementia
Authors: Cose Diana Shulla , Dean William 
Published: December 2023

AbstractLorenzo’s House, an international nonprofit empowers families living with younger‐onset dementia through our holistic model. Younger‐onset does not just impact the person diagnosed: it impacts a whole family. Services for people impacted by dementia are geared towards older adults, but younger‐onset strikes people in their 30s, 40s, and 50s. There is an urgency as there has been a 200% increase between 2013‐2017, in this age range, according to BlueCross BlueShield. This gap in appropriate services and alarming uptick leaves families on an isolated path, searching for resources, support, and basic understanding.Youth are often affected by a parent’s diagnosis at a neurobiologically vulnerable time in their lives. Youth whose parents have younger‐onset dementia frequently don’t know how to explain their experience as a carer with their peers, leaving them isolated and managing the ongoing change by themselves. By creating spaces specifically catered towards these young carers, Lorenzo’s House has radically shifted the journey of what younger‐onset dementia looks like for children and young adults.Our three innovative Youth Initiatives empower young carers with strategies and a community that understands. Our Youth Summit, a virtual experience designed by young carers and trusted professionals builds an alliance by sharing stories, exchanging carer techniques and expanding brain health knowledge. Our Light Club, a virtual bi‐monthly youth carer hangout offers peer support, mindfulness practices, and laughter. Our Young Professionals Board magnifies our mission and works to break stigma through advocacy, education, and outreach.
Analysis of Alzheimer’s disease‐related synaptic alterations using microfluidic microglia/neuron co‐cultures
Authors: Siedlecki‐Wullich Dolores , Ayral Anne‐Marie , Buiche Valerie , Lambert Jean‐Charles , Kilinc Devrim 
Published: December 2023

AbstractBackgroundMicroglial cells are resident macrophages of the central nervous system. Genome‐wide association studies identified numerous Alzheimer’s disease (AD) risk genes highly or exclusively expressed in microglia, supporting their role as major players in AD pathogenesis. We aim to describe the effect of microglia activation on synaptic connectivity and its potential modulation by AD risk genes.MethodWe developed a microfluidic co‐culture device where fluidically isolated, mature neuronal synapses are brought in contact with microglia, enabling exclusive genetic and pharmacological interventions to neurons and microglia. We cultured cortical neurons from WT embryonic mice in pre‐ and postsynaptic chambers for 7 days, after which primary microglia from 10‐month‐old WT and APP (hAPPJ20, PDGFAPPSw,Ind) mice were added into the synapse chamber. Microglia morphology and synaptic connectivity near microglia were analyzed via immunocytochemistry and confocal microscopy.ResultExposure to lipopolysaccharide (LPS) activated microglia as evidenced by increased surface area and circularity. Morphological changes were correlated with Interleukin‐1 concentration in the medium, indicative of an inflammatory response. We observed a higher reactivity to LPS in microglia from APP mice compared to WT mice, suggesting that genotype‐related differences in microglia reactivity could also be applicable to pathologically relevant stimuli, such as exposure to amyloid‐β oligomers. On‐going work is focused on the synapse pruning process via live‐cell recordings of fluorescent microglia and neurons expressing fluorescently‐tagged synaptic proteins. This model will be used to characterize the dynamic response of microglia to amyloid‐β and include microglia harvested from mice carrying mutations for microglia‐related AD risk genes.ConclusionOur microfluidic co‐culture device enables specific modulation and high‐content analysis of microglial activity and synaptic connectivity in physiological and AD pathological conditions.
Biomarker collection from the Caribbean Hispanic families from Dominican Republic and New York.
Authors: Reyes‐Dumeyer Dolly , Piriz Angel , Soriano Belisa , Franco Yahaira , Coronado Zoraida Dominguez , Recio Patricia , Mejia Diones Rivera , Medrano Martin , Lantigua Rafael A. , Vardarajan Badri N , Honig Lawrence S. , Mayeux Richard 
Published: December 2023

AbstractBackgroundGenetic Studies of Alzheimer’s Disease in Caribbean Hispanics (CH) has been ongoing for over 20 years. Our primary goal was to identify genes in large well‐phenotyped, multiplex families, and sporadic cases and controls. This longitudinal collection of data represents a unique resource for the scientific community. The project is led by collaborators in the United States (US) and the Dominican Republic (DR). For the past three years, our efforts have been centered on the collection of cerebrospinal fluid (CSF), plasma, serum and Paxgene tubes for RNA to study core biomarkers. Collection of blood samples for DNA to conduct genetic analyses is also ongoing.MethodThe cohort consisted of participants aged 50 and older from the DR, including those living in the New York City area, willing and able to provide a blood and CSF samples. Interviewers in the DR were trained to collect data, blood samples and CSF. DNA samples were sent overnight to Columbia university (CU) for processing. CSF, Paxgene tubes, serum and plasma samples were processed in the DR and stored at ‐80F for batch shipping to CU. APOE genotyping was conducted in the US. Biomarkers, metabolomics, and proteomics data was generated at Columbia University. Methylation assays from Paxgene was conducted at Uniformed Services University (USUHS).ResultWe have databased a total of 1899 individuals with plasma samples, 1707 with Paxgene, 1731 with serum and 203 with CSF. Blood samples from 1079 participants have genome wide arra, whole genome sequencing and APOE genotyping. 192 CSF samples have proteomics completed, 153 CSF samples have metabolomics data and 742 have plasma biomarkers (Ab40, Ab42, T‐tau, P‐tau181, NFL and GFAP)).ConclusionSample collection for genetic studies in developing countries present important logistical challenges. Despite these challenges, sample quality is comparable to those collected in New York. Biomarkers from CSF, serum and plasma can give us a closer look into underrepresented populations such as Caribbean Hispanics. Results suggest that similar protocols can be successful in Latin America. Future work will augment the biosample collection of the cohort by collecting samples from additional subjects.
Applying Community Based Participatory Practices to Recruitment for the Asian Cohort for Alzheimer’s Disease
Authors: Yu W. Haung , McCallum Jake , Lam Eleanor , Deng Michelle , Li Xiang Helen , Chou Sephera , Wang Li‐San 
Published: December 2023

AbstractBackgroundAlzheimer’s disease (AD) involves many risk and protective factors encompassing genetics and lived experiences. Despite disease heterogeneity, inclusion of Asian ancestry lags. In the National Alzheimer’s Coordinating Center (NACC) registry, only 2.5% of patients are of Asian ancestry. Lack of inclusion is even greater in the Alzheimer Disease Genetic Consortium, where Asian‐Americans represent only 0.7% of the population, 7‐fold less than the population (5%) of Asian‐Americans over 65. Cumulatively, disparity in research negatively impacts understanding of AD risk and protective factors and led to the formation of the Asian Cohort for Alzheimer’s Disease (ACAD) to address this lack of inclusion.MethodGiven the paucity of Asian American and Canadian older adults in AD research, ACAD applies a community‐based participatory research (CBPR) program to recruit participants, involving research‐community‐medicine partnerships to facilitate both better health outcomes and inclusion in research. A comprehensive program of brain health education, destigmatization, and bridging access to care are important aspects developed through ACAD Outreach and in Toronto. Extensive partnerships also help drive greater awareness about AD and related dementias to ensure a thriving dialog in the community.ResultSince September 2021, the Toronto site has had interest from over 300 individuals of Chinese descent, successfully prescreened 2/3 of those and have thus far enrolled half in the study. Of completed participants, ∼50% are cognitively healthy, 20% with AD and 27% MCI, and 2/3 of participants have provided blood, despite societal reticence for blood donations. To achieve recruitment, we conducted multiple community events, including 15 virtual seminars, in addition to working with medical, long‐term care and community center partners, and using traditional print and social media. Tools to effectively community brain health education and ACAD were developed, including overcoming challenges to participation ensuring participant comfort. This has led to high referral rates (20%) indicating strong traction in the community.ConclusionACAD has demonstrated feasibility in recruitment of voluntary participants to study the risk and protective factors of AD amongst Asian populations and will continue to recruit as well as analyze data, providing this information back to the community as part of the CBPR tenet.
Understanding Asian American, Native Hawaiian, and Pacific Islander participants' attitudes toward research: CARE research recruitment registry
Authors: Park Van Ta , Hoffmann Thomas J. , Tsoh Janice Y. , Meyer Oanh L. , Nam Bora , Tzuang Marian , Kanaya Alka , Hinton Ladson , Gallagher‐Thompson Dolores , Vuong Quyen , Kim David , Grill Joshua D 
Published: December 2023

AbstractBackgroundRecruitment science includes the need for greater elucidation of barriers to participation as well as identification of factors, such as attitudes toward research, that can be addressed to improve recruitment outcomes. This is especially important in populations, such as Asian Americans, Native Hawaiians, and Pacific Islanders (AANHPI), who are significantly underrepresented in Alzheimer’s disease and related dementias (ADRD) research. We examined the Collaborative Approach for AANHPI Research and Education (CARE) research recruitment registry participants’ attitudes toward research.MethodUpon enrollment, all CARE participants (n = 9,405 as of 10/2/22) were invited to complete a 7‐item Research Attitude Questionnaire (RAQ) with 5‐point Likert‐scale responses. RAQ scores range from 7‐35, with higher scores indicating more positive research attitudes. Cronbach’s α was 0.93 (and >0.91 in all language subgroups). Favorable scores were dichotomized at <font face = “Symbol”>&sup3;</font>28.ResultOf 6,793 participants (response rate: 68%) completing the RAQ, the median age of participants was 54y (interquartile range (IQR) = 38‐66y), including 2,028 middle‐aged (50‐64y) and 1,970 older (≥65y) who may be targeted groups for ADRD research. Overall, 14.2% (n = 968) reported having ADRD (median age = 66; IQR = 57‐73). Among the 1,766 caregivers (median age = 45, IQR = 36‐54), 6.5% were ADRD caregivers (n = 115). The major ethnic groups were Vietnamese (39.4%), Chinese (24.0%), Korean (15.8%), Asian Indian (5.3%), Japanese (2.9%), and Native Hawaiians and Pacific Islanders (4.6%). A total of 84.9% were foreign‐born, and 50.8% had limited English proficiency (LEP). Nearly two‐third of the respondents (63.9%) had less than favorable attitudes toward research. Preliminary findings indicate that women, Vietnamese Americans, immigrants to the US, and those with LEP had significantly less favorable attitudes toward research compared to their counterparts (Table 1).ConclusionUnfavorable attitudes toward research may be a frequent, but potentially modifiable, barrier to research participation among AANHPI populations. Certain subpopulations (e.g., those with LEP) may require more tailored and resource intensive engagement to increase their participation. Through enhanced understanding of community members’ attitudes toward research participation, investigators can better design studies to be inclusive and adapt outreach and recruitment strategies, in turn, ensuring the inclusivity, generalizability, and validity of their findings.
Community‐based recruitment in Nigeria and cell biobanking to understand the impact of the apolipoprotein E variants on Alzheimer’s disease
Authors: Maina Mahmoud Bukar , Goni Baba Waru , Marsh Jacob , Wray Selina , Serpell Louise , Karch Celeste M. 
Published: December 2023

AbstractBackgroundDespite the human genetic diversity found in the African continent, there is a lack of understanding of dementia mechanisms in indigenous Africans, in part, due to a lack of access to African samples and models. Thus, we sought to develop a biobank of somatic and induced pluripotent stem cells (iPSC) from indigenous Africans to begin to bridge this gap.MethodCommunity outreach was conducted in Nigeria with the help of the media, health workers and clinicians to recruit healthy biopsy donors from diverse ethnic groups. Interested donors were screened for inclusion/exclusion criteria, including health status, family history, ethnicity, and age.ResultsForearm skin biopsies were performed for 11 donors, and fibroblasts were isolated and banked. Fibroblasts were then reprogrammed to generate iPSCs. Fibroblasts and iPSCs have been banked and will be made available to the global scientific community. The iPSCs are currently being screened for APOE genotypes, and selected lines will undergo CRISPR gene editing to generate isogenic APOE33 and APOE44 iPSCs for cellular and molecular studies of dementia mechanisms in comparison to iPSCs from European ancestral backgrounds.ConclusionOur work will facilitate the incorporation of genetically diverse iPSC brain models in neurodegenerative disease research towards an understanding of the contribution of ancestry to disease mechanisms.
Leveraging the full potential of Raman spectroscopy for the identification of amyloid aggregation states
Authors: Haessler Annika , Jung Nathalie , Windbergs Maike 
Published: December 2023

AbstractBackgroundRaman spectroscopy is a label‐free method often used in the characterization of the beta‐amyloid (Aβ) aggregation process. This process involves peptide misfolding, which can be tracked with Raman microscopy in a non‐invasive manner, since the technique is sensitive for conformational changes in peptide structure. However, often only the spectral bands corresponding to β‐sheets and α‐helices are used for the evaluation of the aggregation state, leaving the remaining spectral information unused. The here presented evaluation aims to explore the full potential of Raman spectroscopy for the characterization of Aβ‐42 aggregates (monomers, oligomers, fibrils) in a comprehensive analysis approach, complemented by Thioflavin T (ThT) fluorescence measurements and atomic force microscopy (AFM).MethodAβ‐42 was reconstituted in diluted ammonia. were prepared by reconstituting peptide in diluted ammonia on ice and dilution with phosphate buffered saline (PBS). Oligomers and fibrils were obtained by incubation in MilliQ water or diluted hydrochloric acid for 24 hours at 4°C or 37°C, respectively. Samples were optionally further diluted for AFM, ThT fluorescence assays and . The Raman spectra were processed using Project 4 software (WITec GmbH, Ulm, Germany), and in‐house written Matlab scripts (The Mathworks, Inc., Natick, USA).ResultUsing Raman spectroscopy, as well as established methods such as AFM and ThT fluorescence, the size and aggregation state of monomeric, oligomeric and fibrillar Aβ‐42 could be confirmed and reproducibly obtained using standardized protocols. Corresponding Raman spectra of these Aβ‐42 aggregates display distinct differences not only in the β‐sheet and α‐helix spectral band, but in the whole spectrum, indicating especially changes in the orientation of tyrosine, phenylalanine, and aliphatic side chains.ConclusionHerein, the potential of Raman spectroscopy as a label‐free, conformation‐sensitive technique for the characterization of Aβ‐42 aggregates was explored by analyzing the full Raman spectrum. Clear differences between all aggregate types were identified in several spectral bands, unveiling detailed information in the Raman spectra that is often not included in the analysis of Aβ aggregates. Thus, this study provides a guideline for extracting comprehensive knowledge from spectroscopic data on peptide aggregation, potentially serving as a non‐destructive, quick addition or alternative to more established methods.