Family Structure and Intervention Strategies: Beyond Empirical Research

Choosing an appropriate conceptual framework, theoretical perspective, and methodology to conduct psychosocial research on families with sickle cell anemic children is a major step in understanding the realities of their family functioning and coping. However, research approaches used to study black families, regardless of the presence of a sick child, have historically used frameworks and perspectives that have focused on pathologies rather than the range of family conditions. As a result, very few data exist on black families that describe and explain the variety and levels of family functioning. Thus, little is known about resilient and organized black families versus those that are dysfunctional and disorganized

Dementia Caregiving Research: Expanding and Reframing the Lens of Diversity, Inclusivity, and Intersectionality

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

The Effects of Placement on Dementia Care Recipients’ and Family Caregivers’ Quality of Life: A Literature Review

Purpose – The purpose of this paper is to review and synthesize the research literature on the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. Design/methodology/approach – Four databases – AgeLine, Medline, EBSCO, and PyscINFO – were searched and the relevant literature from 2002 onwards was reviewed. Findings – The review of 12 studies (five studies, including only family CGs; six studies including residents; one study including both family CGs and CRs) reveals a discrepancy regarding the effects of institutionalization on the CRs’ and CGs’ QoL. Among seven studies on CRs’ QoL change, some reviewed studies found a significant decline in CRs’ QoL after placement with others showing that CRs’ QoL was improved or stable. While some reports indicated that some family CGs benefited from placement, others showed that CGs merely maintained their QoL. However, family CGs in the reviewed studies were more likely to report improved QoL than were their CRs after institutionalization. Research limitations/implications – The authors recommend that future studies should focus on understanding the individual’s adaptation to placement, dyadic changes in QoL (includingmediators/moderators). They emphasize the need for a comprehensive longitudinal study with more than one wave and includes diverse groups including racial/ethnic minority CGs and CRs. Originality/value – This study reviewed and synthesized the research literature on the QoL of both caregiver and the people with dementia they cared for after those they cared for were admitted to long-term care facilities. The conclusions drawn about influences on QoL provide guidance for identifying best practices and research

Black and White Adult Family Members' Attitudes Toward a Dementia Diagnosis

To examine potential benefits of and barriers to diagnosis from the perspective of black and white adults directly affected by Alzheimer's disease (AD). DESIGN : Telephone survey. SETTING : Convenience sample recruited from two U.S. metropolitan areas. PARTICIPANTS : One hundred seventy-eight family members of people with AD, including current and former AD caregivers and immediate blood relatives of someone with AD. MEASUREMENTS : Respondents were asked to rate the importance of eight benefits of and 16 barriers to obtaining a diagnosis. RESULTS : Family members strongly endorse several benefits of obtaining a diagnosis, including getting information, finding out what is wrong with their relative, and prompting future planning. A majority of survey respondents did not endorse any barriers examined. Lack of a cure for AD and the belief that little can be done for someone with AD were the most frequently endorsed barriers. Black respondents endorsed five of the eight benefits more frequently than white respondents. CONCLUSION : Black and white adults with a family member who has received an diagnosis of AD perceive a range of benefits and few barriers to the diagnostic process examined in this study. Their positive experiences might be instructive to families considering pursuing a diagnosis and to physicians who may be reluctant to offer screening or referral because of the belief that families have little to gain.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/65592/1/j.1532-5415.2009.02395.x.pd

Baby boomer caregiver and dementia caregiving: findings from the National Study of Caregiving

Background: previous studies have well documented the characteristics of baby boomers but less is known about the experiences of boomer caregivers (CGs) of people with dementia

Quality of Life for Dementia Caregiving Dyads: Effects of Incongruent Perceptions of Everyday Care and Values

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

Predictors of Discrepancy between Care Recipients with Mild-to-Moderate Dementia and Their Caregivers on Perceptions of the Care Recipients' Quality of Life

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

Adaptive Health Behaviors Among Minorities

Race. ethnicity. and cultural attitudes and practices are among the variables that influence health behaviors. including adaptive health behaviors. The following discussions highlight the important role of social conditions in shaping health behaviors and the central role of family in promoting health across the Asian, Hispanic. Native American, and African American ethnic groups. Factors that may lead to health-damaging behaviors are also discussed. The need for additional research that identifies correlations among physiological, social. and behavioral factors and health behaviors, as well as underlying mechanisms, is called for

Achieving Health Equity in Embedded Pragmatic Trials for People Living with Dementia and Their Family Caregivers

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

Recruitment and Retention of Underrepresented Populations in Alzheimer’s Disease Research: A Systematic Review

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