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Introduction: Few studies have examined the association of loneliness and cognitive functioning in the US. We used two common measures of loneliness and examined their association in a large sample of US Black, Latino, and White adults (ages ≥ 50). Methods: We analyzed Wave 3 of the National Social Life, Health, and Aging Project (N = 2,757). We examined loneliness using one item from the CES-D and the Felt Loneliness Measure (NFLM); cognitive functioning was assessed using the Montreal Cognitive Assessment (MoCA) tool, where higher scores indicated better functioning. We used weighted ordinary least squares regressions to examine the effects of loneliness (CES-D loneliness and NFLM in separate models) on MoCA scores. In exploratory analyses, we examined if these relationships varied by race and ethnicity. We adjusted all models for sociodemographic and other salient factors (e.g., chronic disease, depressive symptoms, living alone). Results: Mean age was 63.49 years, 52% were female, and 9% were Black and 6% Latino persons. Approximately 54% endorsed feeling lonely on at least one measure; 31% (CES-D) and 46% (NFLM). The relationship between loneliness measures was positive and significant, X 2 (1, N = 2,757) = 435.493 p < 0.001. However, only 40% of lonely individuals were identified as lonely on both assessments. CES-D loneliness was inversely (ßËâ = -0.274, p = 0.032) associated with MoCA scores and this association did not vary by race and ethnicity. Greater NFLM loneliness was positively associated (ßËâ = 0.445, p < 0.001) with higher MoCA scores for Latino participants only. Discussion: Loneliness appears to be an important predictor of cognitive functioning. However, the association of loneliness and cognitive functioning varied when using the CES-D loneliness item or the NFLM. Future work is needed to understand how loneliness and its clinically relevant dimensions (social, emotional, existential, chronicity) relate to global and individual cognitive domains. Research is needed with racially and ethnically diverse midlife and older adults, particularly to understand our counterintuitive finding for Latino participants. Finally, findings also support the need for research on interventions to prevent cognitive decline targeting loneliness.
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Using data from a sample of older Korean Americans (n = 2,150), we examined the prevalence and associated factors of physical, emotional, and financial mistreatment. Given the importance of contextual factors, we examined the effect of immigration-related (years in the U.S. and acculturation) and interpersonal/community-related (family solidarity, social network, and ethnic community social cohesion) factors in addition to sociodemographic and health-related characteristics. The rate of experiencing physical, emotional, and financial mistreatment during the past year was 3%, 37.9%, and 16.1%, respectively. Younger age and lower family solidarity were common risk factors for emotional and financial mistreatment. The experience of emotional mistreatment was also more likely among females and those with higher level of acculturation, smaller social networks, and lower ethnic community social cohesion. Chronic disease was an additional risk factor for financial mistreatment. The findings suggest targeted prevention and intervention strategies for elder mistreatment.
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BACKGROUND: Evidence-based programs (EBPs) for older adults effectively improve health outcomes. However, there is a limited understanding of the unique needs of service providers as they consider adopting, implementing, and maintaining programs for older minority adults in low-income communities with limited aging services. METHODS: We conducted semi-structured interviews with key informants of community-based organizations (CBOs) to understand implementation and sustainability needs of CBOs within four racial and ethnically diverse Los Angeles County geographic areas. We performed thematic analysis of interview transcripts. RESULTS: Interviews were conducted with representatives from 25 senior-serving agencies providing aging-related EBPs. CBO representatives reported implementing EBPs in 8 domains: Falls Prevention (68%), Mental Health (64%), Caregiver Health (48%), Chronic Disease Management (48%), Diabetes Management (36%), Arthritis Management (28%), Physical Activity (24%), and Multiple Conditions Management (8%). Themes are presented using the six domains of the Bass and Judge framework for factors impacting successful and sustained EBP implementation. CBOs in low-income and diverse communities described unique challenges with tailoring interventions based on local community context (literacy, language), cultural context, and locally available resources (technology, safe community spaces, transportation) and faced resource-intensive administrative burdens through staff turnover, data collection, sustainable funding, and networking. CONCLUSIONS: Serving racial and ethnic communities has unique challenges that require tailored approaches and additional resources to ensure equitable access to EBPs for all communities. We describe suggestions for enhancing the effective adoption of EBPs among service agencies in under-resourced and diverse aging communities serving populations with aging-related health disparities.
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Artrite , Grupos Raciais , Humanos , Idoso , Envelhecimento , Terapia Comportamental , Coleta de DadosRESUMO
BACKGROUND AND OBJECTIVES: Adopting preventive behaviors is crucial to avoiding coronavirus disease 2019 (COVID-19) infection, and perceived anxiousness may influence such behaviors among older adults and their caregivers. This study investigated the relationships between perceived anxiousness about COVID-19 and preventive behaviors in older adult-caregiver dyads. RESEARCH DESIGN AND METHODS: A cross-sectional study was conducted using 1,565 older adult-caregiver dyads from the 2020 National Health and Aging Trend Study (NHATS)/National Study of Caregiving (NSOC) COVID-19 Supplements data. Actor-partner interdependence models were estimated to examine the associations between older adults' and family caregivers' perceived anxiousness about COVID-19 and their engagement in personal (e.g., wearing masks, washing hands) and social (e.g., avoiding contact with friends, limiting grocery shopping) preventive behaviors. Separate models were estimated based on older adults' dementia status. RESULTS: We found significant actor effects of anxiousness about COVID-19 on preventive behaviors of both older adults and caregivers in nondementia dyads. The anxiousness about COVID-19 of older adults had significant partner effects on both personal and social preventive behaviors of caregivers, whereas caregivers' anxiousness about COVID-19 only had a significant partner effect on social preventive behaviors of older adults. No significant partner effect was found in dementia dyads. DISCUSSION AND IMPLICATIONS: Our findings highlight the critical role of caregivers in promoting older adults' health behaviors during the COVID-19 pandemic and maintaining mental well-being of older adults. The study also implies future efforts to explore the dyadic relationship of dementia care dyads in promoting health behaviors and mental health.
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COVID-19 , Demência , Humanos , Idoso , Cuidadores/psicologia , Estudos Transversais , Pandemias , Qualidade de Vida/psicologia , COVID-19/prevenção & controle , Ansiedade/psicologia , Demência/psicologiaRESUMO
BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.
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Doença de Alzheimer , Disfunção Cognitiva , Humanos , Feminino , Masculino , Doença de Alzheimer/terapia , Doença de Alzheimer/complicações , Disfunção Cognitiva/complicações , Cuidadores , Etnicidade , Progressão da DoençaRESUMO
BACKGROUND: Primary family caregivers of older people with chronic care conditions are highly vulnerable to social isolation and psychological strains such as depression and anxiety due to their demanding responsibilities. This study examines how social isolation mediates the relationship between caregiving stress and mental health symptoms of primary family caregivers. METHODS: The analytic sample included 881 primary caregivers of older adults from the 2015 and 2017 National Study of Caregiving (NSOC). Social isolation was measured using a composite structure that includes objective social disconnectedness and subjective loneliness. Two-wave mediation models were estimated to examine longitudinally if social isolation mediated the relationship between caregiving stress (subjective & objective stress) and mental health symptoms (depression & anxiety) of primary caregivers. RESULTS: The study findings indicate that both subjective (ß = 0.32, p < 0.001) and objective stress (ß = 0.21, p = 0.003) have direct effects on depression among primary caregivers. Social isolation was found to only mediate the relationship between objective stress and depression (ß = 0.18, p < 0.001). In contrast, no significant direct and indirect pathway was found in the anxiety model. CONCLUSIONS: The study demonstrates the internal mechanism where objective strains of caregiving make family caregivers socially isolated, which in turn leads to increased symptoms of depression. Future interventions and practices aimed at improving the psychological well-being of family caregivers should prioritize strategies aimed at increasing social engagement, particularly for those with heavy caregiver burdens.
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BACKGROUND: High utilizers of 9-1-1 place a substantial burden on emergency medical services (EMS). Results of a retrospective review of records data of the City of Los Angeles Fire Department (LAFD) showed a significant increase in older adult high utilizers of 9-1-1. OBJECTIVE: The objective of this study was to explore individual- and system-level factors implicated in EMS use among older adults, and to provide system recommendations to mitigate overuse. METHODS: A phenomenological study was conducted, drawing from LAFD EMS records between 2012 and 2016 to identify and contact high-utilizing patients older than 50 years, their family, agency representatives, and LAFD personnel. Interviews were recorded, transcribed, and coded and a thematic analysis was completed. RESULTS: We conducted in-depth interviews with 27 participants, including patients (n = 8), their families (n = 6), social service agency representatives (n = 3), and LAFD personnel (n = 10). The following cross-cutting themes emerged: nature of 9-1-1 calls, barriers to access, and changing the system. In addition, LAFD and social service agency representatives identified the role of EMS responders and social agency representatives. Patients and their families agreed that previous encounters and interactions with emergency care responders were relevant factors. CONCLUSIONS: This study described reasons for 9-1-1 calls related to medical and social service needs, including mental health care. Our analysis offers insight from different stakeholders' perspectives on access to medical care and types of barriers that interfere with medical care. All groups shared recommendations to advance access to medical and mental health care.
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Serviços Médicos de Emergência , Humanos , Idoso , Estudos RetrospectivosRESUMO
Inequities with regard to brain health, economic costs, and the evidence base for dementia care continue. Achieving health equity in dementia care requires rigorous efforts that ensure disproportionately affected populations participate fully in-and benefit from-clinical research. Embedding-proven interventions under real-world conditions and within existing healthcare systems have the potential to examine the effectiveness of an intervention, improve dementia care, and leverage the use of existing resources. Developing embedded pragmatic controlled trials (ePCT) research designs for nonpharmacological dementia care interventions involves a plethora of a priori assumptions and decisions. Although frameworks exist to determine whether interventions are "ready" for ePCT, there is no heuristic to assess health equity-readiness. We discuss health equity considerations, case examples, and research strategies across ePCT study domains of evidence, risk, and alignment. Future discussions regarding health equity considerations across other domains are needed.
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Demência , Equidade em Saúde , Humanos , Atenção à Saúde , Demência/terapia , Ensaios Clínicos Pragmáticos como AssuntoRESUMO
Introduction: This perspective paper addresses the US Hispanic/Latino (herein, Latino) experience with regards to a significant public health concern-the underrepresentation of Latino persons in Alzheimer's disease and related dementias (AD/ADRD) clinical trials. Latino individuals are at increased risk for AD/ADRD, experience higher disease burden, and low receipt of care and services. We present a novel theoretical framework-the Micro-Meso-Macro Framework for Diversifying AD/ADRD Trial Recruitment-which considers multi-level barriers and their impact on Latino trial recruitment. Methods: Based on a review of the peer-reviewed literature and our lived experience with the Latino community, we drew from our interdisciplinary expertise in health equity and disparities research, Latino studies, social work, nursing, political economy, medicine, public health, and clinical AD/ADRD trials. We discuss factors likely to impede or accelerate Latino representation, and end with a call for action and recommendations for a bold path forward. Results: In the 200+ clinical trials conducted with over 70,000 US Americans, Latino participants comprise a fraction of AD/ADRD trial samples. Efforts to recruit Latino participants typically address individual- and family-level factors (micro-level) such as language, cultural beliefs, knowledge of aging and memory loss, limited awareness of research, and logistical considerations. Scientific efforts to understand recruitment barriers largely remain at this level, resulting in diminished attention to upstream institutional- and policy-level barriers, where decisions around scientific policies and funding allocations are ultimately made. These structural barriers are comprised of inadequacies or misalignments in trial budgets, study protocols, workforce competencies, healthcare-related barriers, criteria for reviewing and approving clinical trial funding, criteria for disseminating findings, etiological focus and social determinants of health, among others. Conclusion: Future scientific work should apply and test the Micro-Meso-Macro Framework for Diversifying AD/ADRD Trial Recruitment to examine structural recruitment barriers for historically underrepresented groups in AD/ADRD research and care.
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BACKGROUND: Telehealth has gained substantial attention during the COVID-19 pandemic, and reimbursement policies in health care settings have increased access to remote modes of care delivery. Telehealth has the potential to mitigate care concerns for people living with dementia and their family caregivers. There is a paucity of knowledge on the performance of telehealth services and user experiences, especially among caregiving dyads during the pandemic. OBJECTIVE: This study aims to describe the implementation, effectiveness, user experience, and barriers to accessing and using telehealth services for people living with dementia and their caregivers during the COVID-19 pandemic. METHODS: Following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist, we searched 7 databases (PubMed, PsycINFO, AgeLine, CINAHL, Social Services Abstracts, Web of Science, and Scopus) and a web-based search engine (Google Scholar). The inclusion criteria for peer-reviewed English publications from March 2020 to August 2022 consisted of studies related to telehealth services for people living with dementia and their family caregivers and studies conducted during the COVID-19 pandemic. RESULTS: A total of 24 articles (10 quantitative and 14 qualitative studies) from 10 different countries were included. The major findings of the reviewed articles were extracted and organized into the following 4 themes: study design characteristics-strategies were adopted to improve the accessibility and experience of people living with dementia-caregiver dyads; efficacy outcomes of telehealth services-robust evidence is lacking on the comparative effectiveness of in-person services; perceived experiences of people living with dementia and caregivers-most reviewed studies reported positive experiences of using telehealth services and perceived personal and social benefits from their participants; and barriers to accessing and using telehealth services-several barriers related to individuals, infrastructure, and telehealth environments were identified. CONCLUSIONS: Although evidence of its effectiveness is still limited, telehealth is widely accepted as a viable alternative to in-person care for high-risk groups, such as people living with dementia and their caregivers. Future research should include expanding digital access for those with limited resources and low technology literacy, adopting randomized controlled trial designs to establish the comparative effectiveness of different modes of service delivery, and increasing the sample diversity.
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COVID-19 , Demência , Telemedicina , Humanos , Cuidadores , Demência/terapia , PandemiasRESUMO
Introduction: Dementia is characterized by significant declines in cognitive, physical, social, and behavioral functioning, and includes multiple subtypes that differ in etiology. There is limited evidence of the influence of psychiatric and substance use history on the risk of dementia subtypes among older underrepresented racial/ethnic minorities in the United States. Our study explored the role of psychiatric and substance use history on the risk of etiology-specific dementias: Alzheimer's disease (AD) and vascular dementia (VaD), in the context of a racially and ethnically diverse sample based on national data. Methods: We conducted secondary data analyses based on the National Alzheimer's Coordinating Center Uniform Data Set (N = 17,592) which is comprised a large, racially, and ethnically diverse cohort of adult research participants in the network of US Alzheimer Disease Research Centers (ADRCs). From 2005 to 2019, participants were assessed for history of five psychiatric and substance use disorders (depression, traumatic brain injury, other psychiatric disorders, alcohol use, and other substance use). Cox proportional hazard models were used to examine the influence of psychiatric and substance use history on the risk of AD and VaD subtypes, and the interactions between psychiatric and substance use history and race/ethnicity with adjustment for demographic and health-related factors. Results: In addition to other substance use, having any one type of psychiatric and substance use history increased the risk of developing AD by 22-51% and VaD by 22-53%. The risk of other psychiatric disorders on AD and VaD risk varied by race/ethnicity. For non-Hispanic White people, history of other psychiatric disorders increased AD risk by 27%, and VaD risk by 116%. For African Americans, AD risk increased by 28% and VaD risk increased by 108% when other psychiatric disorder history was present. Conclusion: The findings indicate that having psychiatric and substance use history increases the risk of developing AD and VaD in later life. Preventing the onset and recurrence of such disorders may prevent or delay the onset of AD and VaD dementia subtypes. Prevention efforts should pay particular attention to non-Hispanic White and African American older adults who have history of other psychiatric disorders.Future research should address diagnostic shortcomings in the measurement of such disorders in ADRCs, especially with regard to diverse racial and ethnic groups.
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OBJECTIVES: Caregivers play a key role in supporting older Mexican Americans, who are less likely to enter nursing facilities than other racial/ethnic groups in the US. However, there is little research on how Neuropsychiatric symptoms (NPS) affect relationship quality between caregivers and care recipients. METHOD: Using data from the 2015 wave of the Hispanic Established Populations for Epidemiologic Studies of the Elderly (H-EPESE) (n = 416) study of older (age 85+) Mexican Americans, we examined relationship quality and NPS with ordered logistic regression. Relationship quality was measured using positive (enjoyment, appreciation) and negative (nerves, argue) assessments. NPS were categorized into hyperactivity, affective, and psychosis symptoms. RESULTS: Hyperactivity symptoms were associated with appreciation, arguing, and nerves. Psychosis symptoms were associated with arguing and nerves. Spousal caregivers were more likely to report arguing and nerves and less likely to report feeling appreciated. Enjoyment assessments were not associated with NPS. CONCLUSION: Relationship quality is related to behavioral changes in late life. Mexican American caregivers negatively evaluate their relationships, not in response to care tasks per se, but when the older person exhibits behavioral problems. The relationship between NPS and negative relationship assessments may be due to unanticipated behavior changes in late life and stigma around psychiatric symptomatology.
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Transtornos Mentais , Americanos Mexicanos , Humanos , Idoso , Idoso de 80 Anos ou mais , Americanos Mexicanos/psicologia , Cuidadores/psicologia , Transtornos Mentais/epidemiologia , Hispânico ou Latino , Modelos LogísticosRESUMO
Guided by the theories of social capital and stress-buffering, we examined how the association between low acculturation and poor mental health among older immigrants would be modified by social capital in ethnic communities (social cohesion, social engagement, perceived ethnic density, and the quality of social interaction). Using data from the Study of Older Korean Americans (N = 2,150, Mean age = 73.4), direct and interactive effect models were examined. Lower acculturation was associated with a greater level of psychological distress, and their link was modified by social cohesion (ß = .19, p < .01) and negative social interactions (ß = - .97, p < .01). Findings suggest that the mental health risk associated with low acculturation could be intensified when older immigrants perceive low sense of cohesion in their ethnic communities or have negative interactions with ethnic community members.
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Aculturação , Emigrantes e Imigrantes , Angústia Psicológica , Capital Social , Idoso , Humanos , Asiático/etnologia , Asiático/psicologia , Emigrantes e Imigrantes/psicologia , Saúde Mental/etnologia , Estados Unidos , Coesão Social/etnologiaRESUMO
In the US, there is a growing number of older Latinx communities. Qualitative approaches such as narrative inquiry may be fruitful endeavors to elucidate their lived experiences. However, older Latinx communities, including sexual minorities, are disproportionately exposed to social, health, and historical challenges that may result in exposure to potentially traumatic events (e.g. discrimination, illness, grief, etc.). The recognition of high rates of exposure to potentially traumatic events among participants has led to the recommended adoption of Trauma Informed (TI) principles for use in non-trauma specific research. At present, there are limited examples and discussions about the implementation of TI principles in qualitative research and our literature review yielded no discussion of the use of TI principles in narrative inquiry or with older Latinx communities. In this manuscript, we advocate for the adoption of TI principles when engaging in narrative inquiry with older Latinx adults. Second, we discuss examples of TI guided practices we employed while conducting the Palabras Fuertes study of life history narratives with older Latino immigrant gay men living in New York City. Finally, based on these experiences, we provide recommendations for incorporating TI into future narrative research with older Latinx communities.
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Collaboration between social workers (SW) and community health workers (CHW) plays an essential role in addressing health inequities in the United States (US). However, little is known about the current state of CHW/SW collaboration. The objectives of this review were to identify (a) the nature, goals and setting of CHWs and SW collaboration; (b) the patient outcomes utilised to measure intervention efficacy. The literature search was conducted in December 2020 using six databases. The inclusion criteria were (1) interventions that included CHWs and SWs; (2) US-based; (3) published between 2000-2020; (4) peer-reviewed journal articles; (5) examining health or mental health outcomes. Search results identified 281 articles, and 15 were included in the final analysis. Settings that utilised SW/CHW collaboration included outpatient clinics (n = 10); community organisations (n = 4) or hospital (n = 1). CHW and SW interventions focused on disease prevention (n = 8), chronic care (n = 4) and mental health (n = 3). Health outcomes were the most evaluated (n = 13), and significant improvement of at least one health outcome was reported in those studies. Mental health outcomes (n = 3) were also significantly improved, while social determinants of health (n = 2) were least common and descriptive only. This is the first review of SW and CHW collaboration. Clarity regarding SW and CHW roles and scopes of practice are needed to understand better SW/CHW collaboration and its impacts on community health outcomes and improve the process of collaboration. SW and CHW collaboration may increase clients' access to preventive care, mental health and address health inequities.
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Agentes Comunitários de Saúde , Assistentes Sociais , Estados Unidos , Humanos , Agentes Comunitários de Saúde/psicologia , Saúde Mental , Atenção à SaúdeRESUMO
OBJECTIVES: Many older adults receive informal care from multiple caregivers, including support from a primary caregiver and a secondary caregiver network (SCN). This study examined the association between SCN support and primary caregiver burden, and whether the association varies across women and men, Black and White. METHODS: Data came from the 2015 National Health and Aging Trend Study and the National Study of Caregiving, including non-Hispanic White and Black men and women who were identified as primary caregivers (n = 967) and their secondary caregivers (n = 2,253). SCN support was indicated by (a) care domain overlap and (b) proportion of caregiving by SCN. Multiple regression models were estimated for the analyses. RESULTS: Both SCN support variables were found to reduce primary caregiver burden, and the effect of proportion of caregiving by SCN was found to vary by gender-race groups. With the increase of the proportion of caregiving by SCN, both Black and White women caregivers tend to experience faster decrease in caregiver burden than Black men. DISCUSSION: Our findings support the role of SCN in reducing primary caregiver burden and demonstrate that the benefit of SCN support varies across the 4 gender-race groups. The results indicate that it is imperative to further examine caregiving experience and protective mechanisms of SCN support using an intersectional perspective.
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Sobrecarga do Cuidador , Cuidadores , Idoso , População Negra , Feminino , Serviços de Saúde , Humanos , Masculino , Assistência ao PacienteRESUMO
Latinx adults experience a high burden of dementia. Given that modifiable factors drive dementia disparities, engaging Latinxs in Alzheimer's disease and related dementias (ADRD) education is critical to address dementia burden among this aging population. Yet, no studies have documented the role of the COVID-19 pandemic on dementia education among Latinxs. This study: (1) elucidates the recruitment and retention processes targeting Latinxs for online educational events during the pandemic; (2) describes facilitators/barriers to participation; and (3) offers lessons learned. We developed online dementia-focused workshops (English and Spanish) and employed a cold-calling approach to invite Latinx participants enrolled in clinical studies (N = 209). Bivariate tests assessed demographic and cognitive differences between those who recruiters did (n = 60) and did not (n = 149) successfully engage. Frequency counts assessed participants' technological access. Only 8/209 attended the online events; all held university degrees, most reported English as their primary language, and none experienced cognitive impairment. Results underscore how educational attainment, cognitive impairment, language preference, and age intersect to shape recruitment in dementia-focused online education. To promote healthy aging and to ameliorate dementia disparities, barriers to online engagement among older Spanish-speaking Latinxs with cognitive impairment and low educational attainment must be addressed.
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The Alzheimer's Association hosted the second Latinos & Alzheimer's Symposium in May 2021. Due to the COVID-19 pandemic, the meeting was held online over 2 days, with virtual presentations, discussions, mentoring sessions, and posters. The Latino population in the United States is projected to have the steepest increase in Alzheimer's disease (AD) in the next 40 years, compared to other ethnic groups. Latinos have increased risk for AD and other dementias, limited access to quality care, and are severely underrepresented in AD and dementia research and clinical trials. The symposium highlighted developments in AD research with Latino populations, including advances in AD biomarkers, and novel cognitive assessments for Spanish-speaking populations, as well as the need to effectively recruit and retain Latinos in clinical research, and how best to deliver health-care services and to aid caregivers of Latinos living with AD.
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Doença de Alzheimer , COVID-19 , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/epidemiologia , Doença de Alzheimer/terapia , Biomarcadores , Hispânico ou Latino , Humanos , Pandemias , Estados UnidosRESUMO
INTRODUCTION: The dementia experience is not a monolithic phenomenon-and while core elements of dementia are considered universal-people living with dementia experience the disorder differently. Understanding the patterning of Alzheimer's disease and related dementias (ADRD) in the population with regards to incidence, risk factors, impacts on dementia care, and economic costs associated with ADRD can provide clues to target risk and protective factors for all populations as well as addressing health disparities. METHODS: We discuss information presented at the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, Theme 1: Impact of Dementia. In this article, we describe select population trends, care interventions, and economic impacts, health disparities and implications for future research from the perspective of our diverse panel comprised of academic stakeholders, and persons living with dementia, and care partners. RESULTS: Dementia incidence is decreasing yet the advances in population health are uneven. Studies examining the educational, geographic and race/ethnic distribution of ADRD have identified clear disparities. Disparities in health and healthcare may be amplified by significant gaps in the evidence base for pharmacological and non-pharmacological interventions. The economic costs for persons living with dementia and the value of family care partners' time are high, and may persist into future generations. CONCLUSIONS: Significant research gaps remain. Ensuring that ADRD healthcare services and long-term care services and supports are accessible, affordable, and effective for all segments of our population is essential for health equity. Policy-level interventions are in short supply to redress broad unmet needs and systemic sources of disparities. Whole of society challenges demand research producing whole of society solutions. The urgency, complexity, and scale merit a "whole of government" approach involving collaboration across numerous federal agencies.