Kalisha Bonds Johnson

Background and Objectives: Tele-Savvy, a psychoeducation program for dementia care partners, was designed to improve caregiver mastery (e.g., confidence). While the program focused on care partner’s outcomes, there were potential benefits to the quality of the relationship between the person living with dementia and the care partner. Research Design and Methods: This secondary data analysis examined the dyadic relationship quality (i.e., positive interaction and dyadic strain) as reported by 261 care partners from baseline to 6 months postintervention across three treatment arms of the clinical trial: Active group who immediately received Tele-Savvy (n = 96), a Healthy Living attention control group (n = 111), and a Waitlist Control group (n = 54), which care partners received Tele-Savvy after 6 months. Results: In the Tele-Savvy group, care partners reported significant improvements in positive interactions and reduction in dyadic strain over time compared with the care partners in both the Healthy Living and Waitlist Control groups. After all groups received Tele-Savvy, all care partners improved their positive interaction with the person living with dementia and experienced less dyadic strain over time. Discussion and Implications: The focus of Tele-Savvy is not on improving the quality of dyadic relationships. Our results suggest that interventions focused on the care partner’s self-efficacy have the potential to improve the dyadic relationship from the perspective of the care partner, and interventions should include dyadic measures even if from the perspective of one member of the dyad. Clinical Trial Registration Number: NCT03033875

Introduction/Objectives: African American persons living with Alzheimer’s disease and related dementias (ADRD) experience health disparities in health care decision making. This study’s objective is to understand what influences health care decision making for African American persons living with ADRD from the perspectives of primary care providers and care team members. Methods: Twenty primary care providers and care team members completed semi-structured interviews to identify barriers associated with their involvement in health care decision making for African American persons living with ADRD. The interviews were analyzed with directed content analysis. Results and Conclusion: Three themes were identified: Systemic Healthcare Obstacles; Relational Healthcare Obstacles; and Individual Health Care Obstacles. The themes diverged to yield 9 categories (Inability to See/Hesitancy to Address Racism; Care Coordination at End of Life; Perceived Lack of Trust; Inadequate Answers and Connections; Uncertainty with Decision Making; Racial and Ethnic Identity; Lived Experiences; Definition of a Good Decision; and Hurt Feelings) and 2 subcategories (Cultural Miscommunication and Time to Build Mutual Understanding). To effectively support decision making processes for African American persons living with ADRD, there is a need to equip primary care providers and care team members with means to identify and address obstacles at multiple levels.

Introduction There is a higher proportion of African American care partners due to African American older adults having more than twice the prevalence of Alzheimer’s disease and related dementias (ADRD) compared with non-Hispanic white older adults in the USA. African American adult daughters are the largest group of care partners of African American persons living with ADRD. Within this role, they are faced with navigating multiple health-related decisions to optimise the quality of life of their parent with ADRD, which can negatively influence their own quality of life. This study is guided by three conceptual frameworks: National Institute on Aging’s Health Disparities Research Framework, Black Family Socio-Ecological Context Model and Superwoman Schema. The purpose of this study was to develop a structured culturally responsive prototype intervention that will improve the healthcare decision-making self-efficacy and quality of life of African American parent-adult daughter dementia dyads. The prototype intervention will be piloted in a single-group clinical trial to evaluate feasibility, acceptability and preliminary efficacy. Methods and analysis This study will be conducted in two phases using an explanatory sequential mixed-methods design, wherein qualitative data collection follows quantitative data collection to explain the findings. In the first phase, the quantitative data collection will examine the behavioural, sociocultural and environmental lifecourse influences on healthcare decision-making self-efficacy and the quality of life of 70 African American parent-adult daughter dementia dyads (ie, persons living with ADRD and their adult daughter care partners). The qualitative data collection will consist of a nested sample of 15 dementia dyads and focus on the decision-making processes that affect current and future healthcare use for the parents living with ADRD. Further, this study will explore how these processes influence the quality of life of both members. In phase 2, integrated findings from phase 1 will provide the basis for the development of the prototype intervention using design thinking and intervention mapping with key informants and community advisory board oversight. Once the prototype intervention is developed, a clinical trial will be conducted. This trial will enrol a new sample of 20 African American parent-adult daughter dementia dyads using a pretest–post-test design. Ethics and dissemination The first phase of the study has been approved by the Emory University Institutional Review Board and is registered on ClinicalTrials.gov (NCT05139290). This study will contribute to the development of a structured culturally responsive prototype intervention for African American parent-adult daughter dementia dyads. The findings will determine whether a larger randomised controlled trial is warranted. Results of the research will be disseminated in both academic and community settings. Trial registration number NCT05139290.

Objectives The vast majority of studies on aging, cognition, and dementia focus on non-Hispanic white subjects. This paper adds to the extant literature by providing insight into the African American aging experience. Here we describe the study design and baseline characteristics of the African American Dementia and Aging Project (AADAPt) study, which is exploring aging and cognition in African American older adults in Oregon. Methods African American older adults (n=177) participated in AADAPt, a longitudinal study that collected data on cognitive, physical, and social functioning in annual visits since 2000. Results AADAPt participants had risk factors for developing dementia in future, such as hypertension and hyperlipidemia, but also reported protective factors such as high social engagement. Conclusions The AADAPt project offers new insights into aging in older African Americans that includes data on cognition, social engagement, and physical health, which are crucial for understanding the experience of under-represented groups and making future studies more inclusive. Clinical Implications These findings reflect a window of time for a geographically-focused cohort, and the lessons learned from this study likely have broader implications for shaping the health of these older African American adults.

Background and Objectives: There are a growing number of early-phase (i.e., Stage I, NIH Stage Model) interventions targeted at family care dyads navigating chronic health conditions in older adults. Currently, the benefits of these interventions are often evaluated for older adults and their family care partners separately, even when controlling for interdependence. Without understanding the benefits (and potential harms) for dyads as a whole, understanding of program impact is incomplete. Moreover, few health behavior interventions involving dyads include relational measures to ensure no unintended consequences for the dyad or account for within-dyad pretest risk level. Research Design and Methods: We used secondary data from a quasi-experimental trial involving 39 couples in which 1 member of the dyad was living with Parkinson’s disease as an exemplar demonstration of 3 proposed approaches: an above-zero approach, a pretest risk status approach, and an expanded pattern analysis matrix approach. Results: Approaches provided evidence for dyadic benefits of the intervention compared to the wait-list comparison condition, but carried different assumptions that did not always categorize dyads similarly. Discussion and Implications: Implications of using each approach and selecting different benchmarks for defining success are discussed. The descriptive approaches proposed, provide a rationale for more intentional evaluation of small-sample, early-phase dyadic interventions.

About this Program Collapse The Best Practices for Integrating Health Equity certificate program is a curriculum that provides online training for learners interested in designing and conducting embedded Pragmatic Clinical […]