African-American caregivers' perspectives on aggressive behaviors in dementia.
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ABSTRACT:
SUBMITTER: Hansen BR
PROVIDER: S-EPMC8111739 | biostudies-literature | 2019 Oct-Nov
REPOSITORIES: biostudies-literature
Publications
African-American caregivers' perspectives on aggressive behaviors in dementia.
Hansen Bryan R BR Hodgson Nancy A NA Gitlin Laura N LN
Dementia (London, England) 20180326 7-8
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Project description:We examined knowledge of Alzheimer's disease and related dementias (ADRD), resources, and research opportunities among older African American (AA) and Caucasian caregivers. A mixed methods design integrated qualitative (focus group) and quantitative (survey) data from Northwest Louisiana. Eight focus groups (59 adults, 92% female, 78% AA, 25% rural) revealed limited knowledge. Quantitative findings from 117 ADRD caregivers (83% female, 72% AA, 30% limited heath literacy, 27% low income) indicated participants obtained information from providers (54%), friends and relatives (32%), and the internet (37%). Barriers to care were cost (24%) and lack of family agreement (17%). Few families used adult daycare (8%) or support groups (28%). Concerns about research participation were violation of privacy (30%) and fear of patient distress (27%). Distrust of doctors was minimal (3%). Findings did not vary by race. There is a need for clear, literacy-appropriate information about ADRD, caregiver resources, and clinical trials.
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Project description:BackgroundChronic stress increases the risk of excess intake of calorie-dense foods. Low-income minority caregivers in the United States are cumulatively exposed to stressors and unhealthy foods, but evidence of this association is limited in this population group. The objective of the current study was to assess the association between chronic stress and unhealthy dietary behaviors among low-income African-American caregivers in Detroit, Michigan.MethodsData came from Detroit Dental Health Project, a longitudinal study of pairs of African-American caregivers and children during 2002-2007. A sample of 912 female caregivers were included and their baseline (2002-2003) survey responses were analyzed to identify those with chronic stress and patterns of dietary behaviors. The likelihood of having unhealthy dietary behaviors was compared between chronically stressed caregivers and others, and the mediator role of depressive symptoms or current smoking was tested.ResultsApproximately 10% of caregivers experienced chronic stress as they all reported discrimination, residential movement, and lack of social support. Twenty-five percent of the caregivers were found to have an unhealthy dietary pattern characterized by excess intake of high fatty foods and soda. Chronically stressed caregivers were more likely to exhibit unhealthy dietary behaviors (prevalence ratio: 1.39; 95% CI: 1.05, 1.84), and this relation was significantly mediated by depressive symptoms, not current smoking.ConclusionsThese findings suggest that chronic stress played a role in negatively influencing dietary behaviors. As this association might be mediated by depressive symptoms, an intervention to reduce depressive symptoms can be considered as an effective strategy to promote healthy dietary behaviors among chronically stressed minority caregivers.
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Project description:This study obtained qualitative data from African American (AA) youth and caregiver dyads to inform the Families Improving Together (FIT) for Weight Loss Trial. Focus groups were conducted with 55 AA parent and caregiver dyads to gather perspectives on facilitators and barriers, motivators, and program preferences for health and weight loss using a socio-ecological framework. Four main themes emerged: using a positive health promotion framework for weight loss programs, social support and the role of parents in providing positive support, using a socio-ecological approach to examine factors that contribute to weight, and creating programs that are convenient, fun, and reduce barriers to participation. The findings from this study were used to develop the FIT intervention and indicate important individual, interpersonal, and environmental factors to consider when developing weight management and healthy lifestyle programs for AA families.
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Project description:Prostate cancer is the most frequently diagnosed and second most fatal nonskin cancer among men in the United States. African American men are two times more likely to develop and die of prostate cancer compared with men of other ancestries. Previous whole genome or exome tumor-sequencing studies of prostate cancer have primarily focused on men of European ancestry. In this study, we sequenced and characterized somatic mutations in aggressive (Gleason ≥7, stage ≥T2b) prostate tumors from 24 African American patients. We describe the locations and prevalence of small somatic mutations (up to 50 bases in length), copy number aberrations, and structural rearrangements in the tumor genomes compared with patient-matched normal genomes. We observed several mutation patterns consistent with previous studies, such as large copy number aberrations in chromosome 8 and complex rearrangement chains. However, TMPRSS2-ERG gene fusions and PTEN losses occurred in only 21% and 8% of the African American patients, respectively, far less common than in patients of European ancestry. We also identified mutations that appeared specific to or more common in African American patients, including a novel CDC27-OAT gene fusion occurring in 17% of patients. The genomic aberrations reported in this study warrant further investigation of their biologic significant role in the incidence and clinical outcomes of prostate cancer in African Americans. Cancer Res; 76(7); 1860-8. ©2016 AACR.
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Project description:PurposeRelatively little is known about caregivers of African American cancer survivors. Our goal was to identify the extent of burden among this group of caregivers.MethodsResponses from 560 informal caregivers of African American participants of the Research on Cancer Survivors (ROCS) study in Detroit, MI, were analyzed including demographics, assistance provided including activities of daily living (ADLs) and instrumental activities of daily living (IADLs), time spent in caregiving, and caregiver burden (CGB). We assessed relationships between CGB and demographic variables, ADLs/IADLs, and level of care. Multivariable logistic regression determined which ADLs and IADLs were associated with high CGB.ResultsOver 75% of caregivers were female and 97% identified as African American. Mean age was 52.6 years. Fifty-six percent were employed outside the home, and 90% were related to the survivor. Caregivers averaged 35.7 h/week providing care, assisting with on average 2.8 ADLs and 5.0 IADLs. Despite the many hours and activities reported, no caregivers rated CGB as severe; only 4% rated it moderate to severe. ADLs associated with the top quartile of CGB were feeding and toileting; IADLs were finances, telephoning, housework, and medications.ConclusionsCaregivers for African American cancer survivors provide many hours of care, yet most describe their CGB as low. Although ADL assistance is often available through the healthcare system, assistance with IADLs presents an opportunity to lessen the burden for these caregivers and their care recipients.Implications for cancer survivorsAfrican American cancer survivors receive much care from informal family caregivers, who assist with multiple ADLs and IADLs. Formal IADL assistance programs, similar to those available for ADLs, would benefit both survivors and caregivers.
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Project description:PurposeThis study aimed to evaluate the potential risk for localized aggressive periodontitis (LAgP) in African American children by detection of the potential periodontal pathogen Aggregatibacter actinomycetemcomitans (Aa) using polymerase chain reaction (PCR) and microbiome analysis.MethodsTwenty-one pre-adolescents (age range equals 10.7 to 13.1 years old) were recruited, for this IRB-approved study. Oral examination included limited periodontal examination determining bleeding index (BOP) and periodontal probing (PD). An oral mucosa sample was used for analysis.ResultsNine of 21 children were Aa+ by PCR. The Aa+ group had a significantly higher proportion of teeth with BOP and PD greater than four mm than the Aa- group (P=0.014 and 0.006 for percent BOP and percent PD equal to or greater than four mm, respectively; Mann Whitney Test). No significant differences in microbe abundance or composition were found from comparison of Aa+ versus Aa- samples.ConclusionsDetection of Aa from preadolescent African American children was associated with signs of periodontal inflammation. Although none of these children were diagnosed with LAgP, PCR targeting Aa could be a risk factor. Further study is indicated; however, the usefulness of PCR in dental practice setting to assess risk may be cost-effective for early diagnosis and prevention of LAgP.
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Project description:Religious and spiritual (R/S) practices support individuals during difficult situations. The COVID-19 social distancing restrictions may have limited access to R/S practices for older adults with Alzheimer's disease related dementia (ADRD) and their caregivers, affecting coping and well-being. This qualitative study explored the impact of social distancing on R/S practices and coping in ADRD-caregiver dyads from the perspective of caregivers. Interviews were conducted with 11 family caregivers of older adults with ADRD residing in nursing homes (n = 4) or private homes (n = 7). Caregivers continued individual and started virtual R/S practices which improved their ability to cope. However, organized R/S practices were unavailable for those with ADRD, but they used prayer and read religious texts which noticeably improved their mood. Healthcare professionals' sharing of individual and community R/S resources available for ADRD-caregiver dyads could decrease anxiety and agitation, while improving their ability to cope with increased isolation.
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Project description:Despite the strong correlation between caregiver substance abuse and child maltreatment, little information exists to understand the typology of African American caregivers with substance abuse problems in the child welfare system. Research shows African American caregivers contend with multiple problems stemming from substance abuse. Unfortunately, we do not yet know how to best tailor resources to be responsive to varying groups of African American caregivers. Using data from the National Survey of Child and Adolescent Well-being (NSCAW), this investigation tested for distinct multivariate profiles among a subset of African American caregivers with substance abuse problems (n=258). Latent Class Analysis (LCA) was used to classify caregivers, and five classes were identified among this high risk sample - each with distinct risk profiles. Based on these findings, we discuss implications for tailored practices to enhance the safety and stability of children involved with child welfare.
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Project description:African Americans (AAs) are disproportionately affected by metabolic diseases and adverse drug events, with limited publicly available genomic and transcriptomic data to advance the knowledge of the molecular underpinnings or genetic associations to these diseases or drug response phenotypes. To fill this gap, we obtained 60 primary hepatocyte cultures from AA liver donors for genome-wide mapping of expression quantitative trait loci (eQTL) using LAMatrix. We identified 277 eGenes and 19,770 eQTLs, of which 67 eGenes and 7,415 eQTLs are not observed in the Genotype-Tissue Expression Project (GTEx) liver eQTL analysis. Of the eGenes found in GTEx only 25 share the same lead eQTL. These AA-specific eQTLs are less correlated to GTEx eQTL in effect sizes and have larger Fst values compared to eQTLs found in both cohorts (overlapping eQTLs). We assessed the overlap between GWAS variants and their tagging variants with AA hepatocyte eQTLs and demonstrated that AA hepatocyte eQTLs can decrease the number of potential causal variants at GWAS loci. Additionally, we identified 75,002 exon QTLs of which 48.8% are not eQTLs in AA hepatocytes. Our analysis provides the first comprehensive characterization of AA hepatocyte eQTLs and highlights the unique discoveries that are made possible due to the increased genetic diversity within the African ancestry genome.
2020-03-27 | GSE147628 | GEO
Project description:Background/objectivesAdvance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia-specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia-specific ACP.DesignQualitative study with separate focus groups for patients and caregivers.SettingMemory disorder clinics.ParticipantsTwenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers.MeasurementsUnderstanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions.ResultsNo participants had engaged in any written form of dementia-specific planning. Barriers to dementia-specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making.ConclusionsEven among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia-specific advance directive documents.
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