RESUMEN
INTRODUCTION: With emergence of disease-modifying therapies, efficient diagnostic pathways are critically needed to identify treatment candidates, evaluate disease severity, and support prognosis. A combination of plasma biomarkers and brief digital cognitive assessments could provide a scalable alternative to current diagnostic work-up. METHODS: We examined the accuracy of plasma biomarkers and a 10-minute supervised tablet-based cognitive assessment (Tablet-based Cognitive Assessment Tool Brain Health Assessment [TabCAT-BHA]) in predicting amyloid ß positive (Aß+) status on positron emission tomography (PET), concurrent disease severity, and functional decline in 309 older adults with subjective cognitive impairment (n = 49), mild cognitive impairment (n = 159), and dementia (n = 101). RESULTS: Combination of plasma pTau181, Aß42/40, neurofilament light (NfL), and TabCAT-BHA was optimal for predicting Aß-PET positivity (AUC = 0.962). Whereas NfL and TabCAT-BHA optimally predicted concurrent disease severity, combining these with pTau181 and glial fibrillary acidic protein was most accurate in predicting functional decline. DISCUSSION: Combinations of plasma and digital cognitive markers show promise for scalable diagnosis and prognosis of ADRD. HIGHLIGHTS: The need for cost-efficient diagnostic and prognostic markers of AD is urgent. Plasma and digital cognitive markers provide complementary diagnostic contributions. Combination of these markers holds promise for scalable diagnosis and prognosis. Future validation in community cohorts is needed to inform clinical implementation.
Asunto(s)
Enfermedad de Alzheimer , Disfunción Cognitiva , Humanos , Anciano , Enfermedad de Alzheimer/metabolismo , Péptidos beta-Amiloides/metabolismo , Pronóstico , Disfunción Cognitiva/metabolismo , Biomarcadores , Tomografía de Emisión de Positrones/métodos , Cognición , Proteínas tauRESUMEN
Importance: Nomenclature in the field of neurodegenerative diseases presents a challenging problem. Inconsistent use of terms such as Alzheimer disease and dementia has compromised progress in clinical care, research, and development of therapeutics. Dementia-associated stigma further contributes to inconsistent and imprecise language. The result is a lack of clarity that produces confusion with patients and the general public and presents communication challenges among researchers. Therefore, the Advisory Council on Research, Care, and Services of the National Plan to Address Alzheimer's Disease authorized a committee to make recommendations for improvement. Objective: To establish a systematic neurodegenerative disease framework for information collection and communication to standardize language usage for research, clinical, and public health purposes. Evidence Review: The Dementia Nomenclature Initiative organized into 3 major stakeholder working groups: clinicians, researchers, and the public (including individuals living with dementia and family caregivers). To inform the work, the initiative completed a narrative literature review of dementia nomenclature evolution over the last century across the PubMed, CINAHL, PsycInfo, and Scopus databases (January 1, 2000, through July 31, 2020). Initiative working groups used the results as a foundation for understanding current challenges with dementia nomenclature and implications for research, clinical practice, and public understanding. The initiative obtained additional input via focus groups with individuals living with dementia and caregivers, with separate groups for race and ethnicity (American Indian or Alaska Native, Asian or Pacific Islander, Black or African American, Hispanic or Latino, and White) as an initial assessment of the meaning of dementia-related terms to these groups. Findings: From working group deliberations, the literature review, and focus group input, the initiative developed a framework clearly separating the clinical syndromic presentation experienced by affected individuals from possible underlying pathophysiologies. In the framework, domains of clinical impairment, such as cognitive, behavioral, motor, and other neurologic features, are graded by level of impairment between none and severe. Next, biomarker information describes underlying disease processes, explains the syndrome, and identifies possible disease labels: Alzheimer disease, frontotemporal degeneration, dementia with Lewy bodies, or vascular cognitive impairment dementia. Conclusions and Relevance: The Dementia Nomenclature Initiative established a framework to guide communication about cognitive impairment among older adults. Wider testing and refinement of the framework will subsequently improve the information used in communicating about cognitive impairment and the way in which the information is used in clinical, research, and public settings.
Asunto(s)
Enfermedad de Alzheimer , Disfunción Cognitiva , Demencia Vascular , Demencia , Enfermedades Neurodegenerativas , Humanos , Anciano , Demencia/psicologíaRESUMEN
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.
Asunto(s)
Demencia , Equidad en Salud , Humanos , Atención a la Salud , Demencia/terapia , Ensayos Clínicos Pragmáticos como AsuntoRESUMEN
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.
RESUMEN
PURPOSE: Black and Hispanic cancer patients experience many worse care quality and health outcomes than non-Hispanic White patients, yet less is known about disparities in caregiving responsibilities and burden among cancer caregivers. METHODS: We analyzed cross-sectional data from Cancer Care Outcomes Research and Surveillance consortium, a large multi-regional, population-based study of colorectal and lung cancer patients and their caregivers. Bivariate and multivariable regression models assessed differences by racial and ethnic groups in caregiving responsibilities and social/emotional, financial, and health burdens. Structural equation models estimated whether sociocultural resources (social support, caregiving preparedness, caregiver-patient communication) mediated racial and ethnic differences in caregiver burden. RESULTS: Compared with non-Hispanic White caregivers (N = 1,169), Black (N = 220) and Hispanic (N = 84) caregivers spent more time caregiving (18 vs. 26 vs. 26 h/week; P < 0.001), completed more tasks (6.8 vs. 7.6 vs. 8.7; P < 0.05), and reported greater financial burden (P = 0.02). Yet, compared to non-Hispanic Whites, Hispanic caregivers reported similar social/emotional and health burdens, while Black caregivers reported lower levels (P < 0.01). In adjusted models, disparities in financial burden disappeared, and Hispanic caregivers had less health burden than non-Hispanic White caregivers (P = 0.01). Social support and/or caregiving preparedness partially mediated the Black-White gap for all three types of burdens. CONCLUSIONS: Black and Hispanic cancer caregivers perform more caregiving and report greater financial burden than non-Hispanic White caregivers, but experience lower or equivalent social/emotional and health burdens. Racial differences in caregivers' social support and caregiving preparedness levels partially explain Black-White burden differences. Research and policy should address Black and Hispanic caregivers' increased financial burden.
Asunto(s)
Etnicidad , Neoplasias , Humanos , Carga del Cuidador , Estudios Transversales , Grupos Raciales , Cuidadores/psicología , Neoplasias/terapiaRESUMEN
Importance: Racial and ethnic groups with higher rates of clinical Alzheimer disease (AD) are underrepresented in studies of AD biomarkers, including amyloid positron emission tomography (PET). Objective: To compare amyloid PET positivity among a diverse cohort of individuals with mild cognitive impairment (MCI) or dementia. Design, Setting, and Participants: Secondary analysis of the Imaging Dementia-Evidence for Amyloid Scanning (IDEAS), a single-arm multisite cohort study of Medicare beneficiaries who met appropriate-use criteria for amyloid PET imaging between February 2016 and September 2017 with follow-up through January 2018. Data were analyzed between April 2020 and January 2022. This study used 2 approaches: the McNemar test to compare amyloid PET positivity proportions between matched racial and ethnic groups and multivariable logistic regression to assess the odds of having a positive amyloid PET scan. IDEAS enrolled participants at 595 US dementia specialist practices. A total of 21â¯949 were enrolled and 4842 (22%) were excluded from the present analysis due to protocol violations, not receiving an amyloid PET scan, not having a positive or negative scan, or because of small numbers in some subgroups. Exposures: In the IDEAS study, participants underwent a single amyloid PET scan. Main Outcomes and Measures: The main outcomes were amyloid PET positivity proportions and odds. Results: Data from 17â¯107 individuals (321 Asian, 635 Black, 829 Hispanic, and 15â¯322 White) with MCI or dementia and amyloid PET were analyzed between April 2020 and January 2022. The median (range) age of participants was 75 (65-105) years; 8769 participants (51.3%) were female and 8338 (48.7%) were male. In the optimal 1:1 matching analysis (n = 3154), White participants had a greater proportion of positive amyloid PET scans compared with Asian participants (181 of 313; 57.8%; 95% CI, 52.3-63.2 vs 142 of 313; 45.4%; 95% CI, 39.9-50.9, respectively; P = .001) and Hispanic participants (482 of 780; 61.8%; 95% CI, 58.3-65.1 vs 425 of 780; 54.5%; 95% CI, 51.0-58.0, respectively; P = .003) but not Black participants (359 of 615; 58.4%; 95% CI, 54.4-62.2 vs 333 of 615; 54.1%; 95% CI, 50.2-58.0, respectively; P = .13). In the adjusted model, the odds of having a positive amyloid PET scan were lower for Asian participants (odds ratio [OR], 0.47; 95% CI, 0.37-0.59; P < .001), Black participants (OR, 0.71; 95% CI, 0.60-0.84; P < .001), and Hispanic participants (OR, 0.68; 95% CI, 0.59-0.79; P < .001) compared with White participants. Conclusions and Relevance: Racial and ethnic differences found in amyloid PET positivity among individuals with MCI and dementia in this study may indicate differences in underlying etiology of cognitive impairment and guide future treatment and prevention approaches.
RESUMEN
"Race" and "ethnicity" are socially constructed terms, not based on biology - in contrast to biologic ancestry and genetic admixture - and are flexible, contested, and unstable concepts, often driven by power. Although individuals may self-identify with a given race and ethnic group, as multidimensional beings exposed to differential life influencing factors that contribute to disease risk, additional social determinants of health (SDOH) should be explored to understand the relationship of race or ethnicity to health. Potential health effects of structural racism, defined as "the structures, policies, practices, and norms resulting in differential access to goods, services, and opportunities of society by "race," have been largely ignored in medical research. The Women's Health Initiative (WHI) was expected to enroll a racially and ethnically diverse cohort of older women at 40 U.S. clinical centers between 1993 and 1998; yet, key information on the racial and ethnic make-up of the WHI cohort of 161,808 women was limited until a 2020-2021 Task Force was charged by the WHI Steering Committee to better characterize the WHI cohort and develop recommendations for WHI investigators who want to include "race" and/or "ethnicity" in papers and presentations. As the lessons learned are of relevance to most cohorts, the essence of the WHI Race and Ethnicity Language and Data Interpretation Guide is presented in this paper. Recommendations from the WHI Race and Ethnicity Language and Data Interpretation Guide include: Studies should be designed to include all populations and researchers should actively, purposefully and with cultural-relevance, commit to recruiting a diverse sample; Researchers should collect robust data on race, ethnicity and SDOH variables that may intersect with participant identities, such as immigration status, country of origin, acculturation, current residence and neighborhood, religion; Authors should use appropriate terminology, based on a participant's self-identified "race" and "ethnicity", and provide clear rationale, including a conceptual framework, for including race and ethnicity in the analytic plan; Researchers should employ appropriate analytical methods, including mixed-methods, to study the relationship of these sociocultural variables to health; Authors should address how representative study participants are of the population to which results might apply, such as by age, race and ethnicity.
RESUMEN
Few studies examine the network structure and function of older women's health discussion networks. We sought to assess the feasibility and acceptability of collecting social network data via telephone from 72 women from the Women's Health Initiative study and to describe structural and functional characteristics. Women were socially connected and had dense networks. Women were emotionally close to network members, but their networks were not used to facilitate communication with health-care providers. One-third of network members was not influential on health-related decision-making. Collecting social network data via telephone is feasible and an acceptable, though un-preferred, mode of data collection.
Asunto(s)
Red Social , Apoyo Social , Salud de la Mujer , Anciano , Estudios Transversales , Estudios de Factibilidad , Femenino , Comunicación en Salud/métodos , Conocimientos, Actitudes y Práctica en Salud , Humanos , Persona de Mediana Edad , Proyectos Piloto , Encuestas y Cuestionarios , TeléfonoRESUMEN
This forum expands and reframes the lens of dementia caregiving research among diverse racial and ethnic groups to better understand the unique needs, stressors, and strengths of multicultural and racial-ethnic family caregivers in the United States. By providing more diverse and inclusive knowledge on caregiving to older adults in the United States, we can create a new path forward with regards to caregiving research. Throughout the article, major questions and answers are supported by critiquing some of the caregiving literature. Discussions are provided to help create inclusive ways of conceptualizing caregiving research and using methodological approaches to reflect the diversity of caregivers and care recipients in the United States. Expanding and reframing the conceptual and methodological lens of diversity, inclusivity and intersectionality can provide evidence to support effective policy, practice, and care in addressing the needs of diverse groups of caregivers and older adults living with dementia.
Asunto(s)
Cuidadores/psicología , Demencia/enfermería , Proyectos de Investigación , Etnicidad , Humanos , Grupos Raciales , Apoyo Social , Estados UnidosRESUMEN
Embedded pragmatic clinical trials (ePCTs) advance research on Alzheimer's disease/Alzheimer's disease and related dementias (AD/ADRD) in real-world contexts; however, health equity issues have not yet been fully considered, assessed, or integrated into ePCT designs. Health disparity populations may not be well represented in ePCTs without special efforts to identify and successfully recruit sites of care that serve larger numbers of these populations. The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease (AD) and AD-Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory's Health Equity Team will contribute to the overall mission of the collaboratory by developing and implementing strategies to address health equity in the conduct of ePCTs and ensure the collaboratory is a national resource for all Americans with dementia. As a first step toward meeting these goals, this article reviews what is currently known about the inclusion of health disparities populations of people living with dementia (PLWD) and their caregivers in ePCTs, highlights unique challenges related to health equity in the conduct of ePCTs, and suggests priority areas in the design and implementation of ePCTs to increase the awareness and avoidance of pitfalls that may perpetuate and magnify healthcare disparities. J Am Geriatr Soc 68:S8-S13, 2020.
Asunto(s)
Cuidadores , Atención a la Salud , Demencia/epidemiología , Equidad en Salud , Ensayos Clínicos Pragmáticos como Asunto , Proyectos de Investigación , Concienciación , Disparidades en Atención de Salud , Humanos , National Institute on Aging (U.S.) , Selección de Paciente , Estados Unidos/epidemiologíaRESUMEN
Alzheimer's disease and related dementias (ADRDs) are a global crisis facing the aging population and society as a whole. With the numbers of people with ADRDs predicted to rise dramatically across the world, the scientific community can no longer neglect the need for research focusing on ADRDs among underrepresented ethnoracial diverse groups. The Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART; alz.org/ISTAART) comprises a number of professional interest areas (PIAs), each focusing on a major scientific area associated with ADRDs. We leverage the expertise of the existing international cadre of ISTAART scientists and experts to synthesize a cross-PIA white paper that provides both a concise "state-of-the-science" report of ethnoracial factors across PIA foci and updated recommendations to address immediate needs to advance ADRD science across ethnoracial populations.
Asunto(s)
Enfermedad de Alzheimer/etnología , Enfermedad de Alzheimer/epidemiología , Etnicidad , Disparidades en Atención de Salud , Grupos Raciales , Anciano , Biomarcadores , Investigación Biomédica , HumanosRESUMEN
INTRODUCTION: Alzheimer's disease and related dementias (ADRD) disproportionately impact racial and ethnic minority and socioeconomically disadvantaged adults. Yet, these populations are significantly underrepresented in research. METHODS: We systematically reviewed the literature for published reports describing recruitment and retention of individuals from underrepresented backgrounds in ADRD research or underrepresented participants' perspectives regarding ADRD research participation. Relevant evidence was synthesized and evaluated for quality. RESULTS: We identified 22 eligible studies. Seven studies focused on recruitment/retention approaches, all of which included multifaceted efforts and at least one community outreach component. There was considerable heterogeneity in approaches used, specific activities and strategies, outcome measurement, and conclusions regarding effectiveness. Despite limited use of prospective evaluation strategies, most authors reported improvements in diverse representation in ADRD cohorts. Studies evaluating participant views focused largely on predetermined explanations of participation including attitudes, barriers/facilitators, education, trust, and religiosity. Across all studies, the strength of evidence was low. DISCUSSION: Overall, the quantity and quality of available evidence to inform best practices in recruitment, retention, and inclusion of underrepresented populations in ADRD research are low. Further efforts to systematically evaluate the success of existing and emergent approaches will require improved methodological standards and uniform measures for evaluating recruitment, participation, and inclusivity.
RESUMEN
PLAIN ENGLISH SUMMARY: Two goals of public health research are to understand what causes disease and ill health, and what can be done to prevent it. To develop appropriate and effective actions, we need to know what resources are available to communities, and what are the beliefs and values that influence behaviour. This means that research needs to be carried out close to the people it affects, to better understand context and environment, as well as people's understandings and interpretations of health and health risk.Connected for Cognitive Health in Later Life (CHILL) was a project developed to test whether engaging local residents in research might be a good way of firstly: raising awareness of research findings in the community; and secondly, affecting mid-life behaviours in favour of ageing well and reducing risk of dementia. We investigated perceptions of ageing and how to age 'well' in a town whose population health is ranked worse than the regional average. Project activities involved: identifying and engaging with stakeholders; conducting 'mini' street interviews; holding community workshops; and taking part in a large community event.This paper describes the process of carrying out the research, and presents a flavour of some of the information captured on context and local understanding of dementia risk. It then goes on to discuss in more depth some of the challenges in attempting to involve people in shaping research and intervention development, before offering some conclusions and suggested next steps for researchers. ABSTRACT: Background Identifying risk of disease and ill health, and developing prevention strategies, are key objectives in public health research. However, poor understanding of the impact of local context, including cultural and ethnic differences, challenges our ability to develop actions that are acceptable and meaningful to local communities. This suggests a need for research embedded in sub-populations, seeking to better understand context, understanding and interpretation of health and health risk. Methods Against a backdrop of wide inequalities in health, the Connected for Cognitive Health In Later Life (CHILL) project began work in a locality with worse than regional average health outcomes aiming to co-develop a project investigating perceptions of ageing and how to age 'well'. Another goal was to test the potential for using Community Based Participatory Research (CBPR) as a way of communicating research knowledge, raising awareness and understanding amongst community members of mid-life risk factors for developing dementia. A four-part scoping study was embarked on, including: stakeholder identification and engagement; street interviews; community workshops; and a wider public engagement event. Results Whilst the project was able to stimulate interest, gain involvement from a small group of residents, and successfully engage members of the public, it was not possible, within the relatively short timescale of the scoping project, to achieve the depth of community involvement necessary to co-design and seek additional funding for collaborative research activities. Conclusions A number of challenges were encountered in scoping CBPR on this particular topic and location. Potential explanations include lack of 'readiness' or 'capacity' amongst the local population, and a very limited timescale for the scoping research to adapt and respond to this. This has significant implications in terms of time and effort necessary to build infrastructure to support research partnerships if researchers wish to engage successfully with members of the public on population health in the future.
RESUMEN
Purpose of the Study: This dyadic study investigated incongruence in care recipients' (CRs') and caregivers' (CGs') perceptions of (a) CRs' involvement in decision making and (b) how much CRs value social relations as predictors of subjective quality of life (QOL) of CRs with mild-to-moderate dementia and their primary family CGs. Design and Methods: A secondary analysis of cross-sectional, dyadic data from in-person interviews with 205 CRs with mild-to-moderate dementia and their primary family CGs Incongruence was operationalized in two ways: absolute difference and direction of difference. Paired t tests and multilevel modeling were used to analyze differences. Results: CGs reported CRs were significantly less involved in decision making and valued social relations significantly less than CRs. Greater incongruence on CRs' values significantly predicted lower QOL of CG and CR. When CGs reported that CRs valued social relationships less than the CR himself/herself reported, CGs' and CRs' QOL was significantly lower compared with QOL for dyads where there was no incongruence on CRs' values. Incongruent perceptions of CRs' involvement in decisions were not a significant predictor of QOL. Implications: This study provides evidence for the importance of assessing both CRs' and CGs' QOL, as well as incongruence in their perceptions in domains that may affect both of their QOL.
Asunto(s)
Cuidadores/psicología , Demencia/terapia , Calidad de Vida/psicología , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Toma de Decisiones , Demencia/psicología , Femenino , Humanos , Relaciones Interpersonales , Entrevistas como Asunto , Masculino , Persona de Mediana EdadRESUMEN
OBJECTIVES: To determine whether there are racial and ethnicity group differences in Resources for Enhancing Alzheimer's Caregiver Health (REACH II) intervention delivery. DESIGN: Randomized controlled trial. SETTING: Community-based intervention delivered at five sites across the United States. PARTICIPANTS: Family caregivers of persons with dementia who were randomized to the active intervention condition (N = 323). INTERVENTION: Nine in-home sessions (90 minutes each) and three telephone sessions (30 minutes each) were intended to be delivered and designed to reduce caregiver burden and depression, improve caregiver self-care and social support, and help caregivers manage behavior problems in persons with dementia. MEASUREMENTS: Interventionists recorded the type of intervention (home or telephone), start and stop times, and whether specific intervention content modules (e.g., stress management, social support) were administered in each session. RESULTS: Overall, REACH II intervention delivery was high, with more than 80% of randomized caregivers completing at least five in-home sessions and receiving eight or more hours of intervention contact, but black caregivers completed fewer in-home sessions (mean 6.98) than Hispanics (mean 7.84) or whites (mean 8.25) and received less total intervention contact time (mean 683 minutes) than Hispanics (mean 842 minutes) or whites (mean 798 minutes). No significant differences in exposure to content according to race or ethnicity were found after controlling for demographic covariates. CONCLUSION: Blacks in REACH II received significantly less intervention contact. Similar multicomponent interventions should examine whether there are systematic differences in intervention delivery across specific demographic subgroups and explore implications for treatment outcomes.
Asunto(s)
Enfermedad de Alzheimer/etnología , Cuidadores/estadística & datos numéricos , Atención a la Salud/etnología , Etnicidad/estadística & datos numéricos , Salud de la Familia/etnología , Recursos en Salud/provisión & distribución , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/etnología , Anciano , Anciano de 80 o más Años , Enfermedad de Alzheimer/epidemiología , Enfermedad de Alzheimer/psicología , Cuidadores/psicología , Costo de Enfermedad , Atención a la Salud/estadística & datos numéricos , Trastorno Depresivo/etnología , Trastorno Depresivo/prevención & control , Etnicidad/psicología , Salud de la Familia/estadística & datos numéricos , Femenino , Disparidades en Atención de Salud/estadística & datos numéricos , Servicios de Atención de Salud a Domicilio/provisión & distribución , Humanos , Masculino , Trastornos Mentales/psicología , Trastornos Mentales/terapia , Persona de Mediana Edad , Autocuidado/psicología , Apoyo SocialRESUMEN
PURPOSE: The goal of this study was to explore predictors of discrepancy between reports of caregivers (CGs) and care recipients (CRs) with mild-to-moderate dementia about CRs' quality of life (QOL). DESIGN AND METHODS: This study was a secondary analysis of cross-sectional data drawn from a study of 200 care dyads of CRs with mild-to-moderate dementia and their primary family CGs. Paired t test, ordinary least squares multiple regression, and binary logistic regression were used for the analyses. RESULTS: Caregivers rated CRs' QOL significantly lower (worse) than CRs did. Ordinary least square regression results showed that greater incongruence in perceptions of CRs' decision-making involvement (DMI) and higher level of CR impairment in activities of daily living were significantly related to higher absolute discrepancy between CG and CR about CRs' QOL. In the logistic models, when the dyad had more DMI incongruence, or CG reported higher relationship strain, the CG was more likely to report a lower CR QOL than CR reported. IMPLICATIONS: Practitioners should consider incorporating CRs' perspective when planning care instead of solely depending on CGs' perspective. Also, practitioners should pay attention to any gap between perceptions of CGs and CRs, particularly with regard to CRs' QOL.
Asunto(s)
Cuidadores/psicología , Demencia/psicología , Calidad de Vida/psicología , Actividades Cotidianas , Anciano , Estudios Transversales , Toma de Decisiones , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estrés Psicológico/psicología , Encuestas y CuestionariosRESUMEN
BACKGROUND: Most research has focused on definitions and predictors of successful aging. However, racial/ethnic minorities are often under represented in this research. Given that the U.S. population is aging and becoming more racially diverse, we examined correlates of "successful aging," as defined by physical functioning and overall quality of life (QOL), among racial/ethnic minority women aged 80 years and older in the Women's Health Initiative. METHODS: Participants included 1,924 racial/ethnic minority women (African Americans, Asian/Pacific Islanders, Hispanic/Latinos, and American Indian/Alaskan Natives) 80 years of age and older who are enrolled in the Women's Health Initiative and have physical functioning data after turning 80 years of age. Analysis of covariance was used to examine between and within group differences in physical functioning and selfrated overall QOL for African Americans, Asian/Pacific Islanders, and Hispanic/Latinos. RESULTS: We found no significant differences in physical functioning between racial/ethnic minority groups in adjusted analyses. However, overall QOL was significantly different between racial/ethnic minority groups. Age, recreational physical activity, and overall selfrated health were independent correlates of physical functioning across racial/ethnic minority groups, whereas overall selfrated health was the only consistent correlate of overall QOL across the minority groups for the within minority group comparisons. CONCLUSIONS: Between racial/ethnic minority group differences in physical functioning are largely explained by demographic, psychosocial, behavioral, and health-related variables. We found statistically significant differences in selfrated overall QOL between racial/ethnic minority groups.