African American Family Caregivers Research Articles

Describing providers’ perspectives on the needs and challenges of family caregivers of African American people living with dementia

ABSTRACT The primary purpose of this study was to explore the needs and challenges of African American family caregivers of People living with dementia (PLWD) from the perspective of service providers including healthcare and social service providers. The study conducted three online semi-structured focus group interviews with service providers (n = 15). Data were analyzed using Braun & Clarke’s guide to thematic analysis approach. Five themes emerged from the analysis of the focus group data: (i) Inadequate information about resources; (ii) Dementia education; (iii) Burden of dementia on families; (iv) Limited financial support and funding; and (v) Suggestions for needed resources. Service providers expressed the lack of community-based dementia service and support programs in African American communities. Findings from the study indicated the need to provide culturally appropriate information on dementia caregiving. This study adds to the scope of knowledge by exploring the processes of seeking help and using services.

INNOVATIVE VOLUNTEER PROGRAMS TO SUPPORT FAMILY CAREGIVERS AND PERSONS LIVING WITH DEMENTIA

Abstract There is a continued need for accessible and cost-effective community-based services and supports for family caregivers and persons living with Alzheimer’s disease and related dementia (ADRD). Utilizing trained volunteers may offer a scalable approach to filling gaps in ADRD care and support. This symposium will provide evidence for utilizing trained volunteers in innovative interventions designed for family caregivers and persons living with dementia. The first paper presents findings from the Senior Companion Program Plus, an intervention using lay providers to deliver a culturally informed psychoeducational intervention with African American ADRD family caregivers. The second paper highlights the Faith Care Family Project which utilizes trained church volunteers from predominantly African American churches to reach African American ADRD family caregivers. The third paper explores the PorchLight Project, a dementia-capable training and respite delivered by volunteers for older people living in the community throughout Minnesota and in select regions of North Dakota. The fourth paper presents findings from an intervention using trained, experienced Chinese dementia caregivers to be volunteer mentors to newer dementia caregivers in the same ethnic community. The final paper presents findings from a telephone-based, intergenerational reminiscence intervention with college student volunteers and persons living with cognitive impairment that incorporates digital storytelling. The symposium will conclude with a critical reflection on the empirical contributions needed to advance scholarship on leveraging volunteers to meet the needs of family caregivers and persons living with ADRD.

EXAMINING THE PRELIMINARY EFFECTIVENESS OF THE SENIOR COMPANION PROGRAM PLUS FOR AFRICAN AMERICAN CAREGIVERS

Abstract Objectives A culturally informed, peer-led, lay provider model, the Senior Companion Program (SCP) Plus, was implemented to decrease caregiving burden/stress and improve coping skills, and social support for African American ADRD caregivers. This study reported the preliminary effectiveness of this intervention. Methods An explanatory sequential mixed methods design was used in this study and a randomized control trial was conducted for the SCP Plus intervention among participants in three sites (N = 20). A sub-sample of participants (n = 7) consented to a qualitative interview about their experiences with the intervention. The Wilcoxon signed-rank tests, Friedman tests, and one-way repeated measures ANOVA were conducted for quantitative analyses. Thematic analysis was used for the qualitative interviews. Results Results demonstrated that knowledge of AD/dementia (KAD) and preparedness for caregiving were significantly improved for all senior companions in the intervention group. Results also showed that caregivers in the intervention group reported significantly decreased caregiving burden, as well as increased KAD, satisfaction with social support, and positive aspects of caregiving. Themes from the qualitative interviews included: learning new skills about caregiving, gaining knowledge about ADRD, and benefits for the dyad. Discussions: Findings from this study implied that SCP Plus was a promising model for African American family caregivers as it benefits both the SC volunteers and the African American ADRD family caregivers.

THE FAITH CARE FAMILY PROJECT: A PILOT STUDY PROTOCOL

Abstract The use of lay providers/trained volunteers, to address ADRD caregiver needs may provide a scalable and culturally congruent approach for bridging gaps in ADRD care, particularly for African American families. Research examining the church as a platform for raising awareness about ADRD suggests that churches are well-suited to providing support and services to families affected by ADRD. This research protocol describes the development and testing of the Faith Care Family Project (FCF), a lay provider intervention for African American family caregivers in a church setting to address caregiver burden, coping skills, and social support. Guided by the revised sociocultural stress and coping model, an explanatory sequential mixed methods design will be utilized to test the efficacy of the FCF intervention with a sample of 18 church volunteer-family caregiver dyads. Specifically, the study addresses four aims: 1) How do church members and pastors perceive the key components of the FCF and what are their recommendations for implementation? 2) Do the church volunteers gain knowledge of ADRD after the 6-hour, FCF training? 3) Do family caregivers report more knowledge of dementia, less caregiver stress and improved well-being, more social support, and better coping skills after they participate in the FCF? and 4) What are the experiences of participants with the FCF? Data are collected at baseline, mid-intervention, post- intervention, 3 months-post intervention and through qualitative interviews. These evaluation activities will allow us to determine the applicability of the FCF as an effective, lay provider intervention for African American ADRD family caregivers.

Abstract 12464: Family Caregiving Support and Sleep Duration Among African American Family Caregivers

Background: African Americans family caregivers are at risk for poor sleep health and cardiovascular disease. Psychological health (i.e., depressive symptoms) and social determinants of health (i.e., social interactions) are associated with sleep health (i.e., sleep duration) and are important contextual drivers of cardiovascular health. Recently, the American Heart Association recognized sleep duration as a component of cardiovascular health. However, there is limited literature on psychological and social determinants of sleep duration among African American family caregivers. Aim: The purpose of this cross-sectional study was to examine the contribution of depressive symptoms and family caregiving support to sleep duration among African American family caregivers. We hypothesized that higher levels of depressive symptoms and lower levels of family caregiving support would be associated with shorter sleep duration. Methods: African American family caregivers ( n = 55) of adults with chronic illness were recruited through community-engaged strategies. Demographic, depressive symptoms, family caregiving support, and sleep duration data were based on self-report measures, whereas body mass index (BMI) data were based on objective height and weight assessments. Hierarchical linear regression was used to determine the contributions of depressive symptoms and family caregiving support on sleep duration, controlling for age, gender, and BMI. Results: On average, participants were 60.67 years old (SD = 12.04) and had a BMI of 34.61 (SD = 7.55). The majority self-identified as female (87.3%). Mean self-reported sleep duration was 5.87 hours (SD = 1.35) per night, which is below the recommended sleep duration of 7-9 hours for adults. In the final model, lower levels of family caregiving support were associated with shorter sleep duration ( b = -.46, p = .046), controlling for caregivers’ age, gender, BMI, and depressive symptoms. Conclusion: Family caregiving support is a modifiable target to promote sleep and cardiovascular health equity for African American family caregivers. Multilevel interventions may optimize the support that caregivers receive from other family members and friends as well as professional and community-based sources.

The Senior Companion Program Plus for African American Caregivers of Persons With Alzheimer Disease and Related Dementias: Protocol for a Randomized Controlled Trial.

Alzheimer disease and related dementias (ADRD) pose significant challenges as chronic health conditions in the United States. Additionally, there are notable disparities in the diagnosis and prevalence of ADRD among diverse populations. Specifically, African American populations have a higher risk of developing late-onset ADRD than White people, and missed diagnoses of ADRD are more common among older African American populations than older White populations. These disparities also impact African American ADRD family caregivers. The overall goal of this project is to develop a culturally informed, lay provider psychoeducational intervention named Senior Companion Program Plus (SCP Plus), which is specifically designed for African American ADRD caregivers and is potentially accessible, affordable, and sustainable. In the proposed explanatory sequential mixed methods study, a randomized controlled trial will be used that includes 114 African American family caregivers of a relative with ADRD who will participate in the 3-month SCP Plus program. The study was funded on September 15, 2018, by the National Institutes of Health (1R15AG058182-01A1). Data collection began on May 16, 2019, but due to COVID-19 restrictions, ended 12 months into the planned 27-month recruitment period on March 31, 2023. The study was completed in June 30, 2023, and currently the results are being analyzed. The SCP Plus offers promise as an intervention that utilizes an existing platform for the delivery of a lay provider intervention and offers a novel approach for addressing gaps in accessible, community-based support for caregivers of people with ADRD. ClinicalTrials.gov NCT03602391; https://classic.clinicaltrials.gov/ct2/show/NCT03602391. RR1-10.2196/49679.

The Senior Companion Program Plus: An Innovative Training Approach for Alzheimer's Disease and Related Dementia.

African Americans adults are disproportionately affected by Alzheimer's disease and related dementias (ADRD) and are underrepresented in research about ADRD. Reducing gaps in the knowledge about ADRD in the African American community is important for addressing dementia care disparities. The existing psychoeducation interventions are often limited by cost and scalability; for these reasons, lay provider (i.e., volunteer) interventions are of increasing interest in ADRD research. The purpose of this study was to evaluate a training of African American Senior Companion (SC) volunteers (n = 11) with dementia-specific knowledge (i.e., Senior Companion Program/SCP Plus), as part of a culturally informed, in-home, psychoeducational intervention for African American ADRD family caregivers. Learning outcomes were measured pre- and post-training, using the Knowledge of Alzheimer's Disease/dementia scale (KAD), the Sense of Competence Questionnaire, and the Preparedness for Caregiving Scale. The results showed significant improvements in knowledge of Alzheimer's disease/dementia, one competence item, "It is clear to me how much care my care recipient needs", and preparedness for caregiving. Overall, the study findings suggest the SCP Plus is a promising, culturally relevant, and potentially scalable lay provider training for ADRD with potential benefits that augment the existing Senior Companion Program.

Analyzing Twitter-Based Social Networks of Support Communities for Hispanic and African American Family Caregivers of Persons with Dementia.

We applied social network analysis to compare Hispanic and Black dementia caregiving networks on Twitter that were established as part of a clinical trial from January 12, 2022, to October 31, 2022. We extracted Twitter data from our caregiver support communities (N=1980 followers, 811 enrollees) via the Twitter API and used social network analysis software to compare friend/follower interactions within each Hispanic and Black caregiving network. Analysis of the social networks revealed that enrolled family caregivers without prior social media competency had overall low connectedness compared to both enrolled and non-enrolled caregivers with social media competency, who were more integrated into the communities that developed through the clinical trial, partly due to their ties to external dementia caregiving groups. These observed dynamics will help to guide further social media-based interventions and also support the observation that our recruitment strategies effectively enrolled family caregivers with various levels of social media competency.

Comparing Emotional Valence Scores of Twitter Messages from Human Coding and Machine Learning Algorithms Among Hispanic and African American Family Caregivers of Persons with Dementia.

We compared emotional valence scores as determined via machine learning approaches to human-coded scores of direct messages on Twitter from our 2,301 followers during a Twitter-based clinical trial screening for Hispanic and African American family caregivers of persons with dementia. We manually assigned emotional valence scores to 249 randomly selected direct Twitter messages from our followers (N=2,301), then we applied three machine learning sentiment analysis algorithms to extract emotional valence scores for each message and compared their mean scores to the human coding results. The aggregated mean emotional scores from the natural language processing were slightly positive, while the mean score from human coding as a gold standard was negative. Clusters of strongly negative sentiments were observed in followers' responses to being found non-eligible for the study, indicating a significant need for alternative strategies to provide similar research opportunities to non-eligible family caregivers.

The Senior Companion Program Plus (SCP Plus): Examining the Preliminary Effectiveness of a Lay Provider Program to Support African American Alzheimer's Disease and Related Dementias (ADRD) Caregivers.

A culturally informed, peer-led, lay provider model, the Senior Companion Program (SCP) Plus, was implemented to decrease caregiving burden/stress and improve coping skills and social support for African American ADRD caregivers. This study reported the preliminary effectiveness of this intervention. An explanatory sequential mixed methods design was used in this study, and a randomized control trial was conducted for the SCP Plus intervention among participants in three sites (n = 20). A subsample of participants (n = 7) consented to a qualitative interview about their experiences with the intervention. Wilcoxon signed-rank tests, Friedman tests, and one-way repeated measures ANOVA were computed for quantitative analyses. Thematic analysis was used for the qualitative interviews. Results demonstrated that knowledge of AD/dementia (KAD) and preparedness for caregiving were significantly improved for all senior companions in the intervention group. Results also showed that caregivers in the intervention group reported significantly decreased caregiving burden, as well as increased KAD, satisfaction with social support, and positive aspects of caregiving. Themes from the qualitative interviews included: learning new skills about caregiving, gaining knowledge about ADRD, and benefits for the dyad. Findings from this study implied that SCP Plus was a promising model for African American family caregivers as it benefits both the SC volunteers and the African American ADRD family caregivers.

ENGAGING AFRICAN AMERICAN FAMILY CAREGIVERS THROUGH ART AND CREATIVE ACTIVITIES: A CASE STUDY

Abstract Studies have shown that engaging family caregivers of people with dementia in creative activities can provide therapeutic benefits by relieving stress and promoting well-being. However, there is a dearth of studies focusing on the involvement of racial minority family caregivers of people with dementia in research involving art and creative activities. The purpose of this study is to present the results of a case study interview with an artist-educator-community collaborator who acted as a key facilitator for the ACTION ARTS study. The purpose of the ACTION ARTS study was to utilize mobile technology applications for facilitating creative activities to enhance health and well-being of African-American family caregivers and their loved ones in the middle-to-late stages of dementia. The study included activities such as memory stimulation, art viewing, art making, and other forms of creative expressions. The research question for the current case study was: What are the best practices for engaging African-American family caregivers of older adults in the middle-to-late stages of dementia in research involving art and creative activities? Thematic analysis of the qualitative data from the case study interview yielded the following recommendations/results (1) Design the program of art and/or creative activities in an easy way to facilitate interaction among participants; (2) Make the program as accessible and relevant as possible so everyone is able to relate to it; (3) Emphasize areas of commonality that could help in giving both the facilitators and participants food for thought.

EMPLOYING DESIGN THINKING METHODS TO CREATE BEHAVIORAL INTERVENTIONS THAT SUPPORT AFRICAN AMERICAN CAREGIVERS

Abstract Design Thinking provides an empathy-based creative problem-solving approach to intervention and/or patient-centered care design that seeks to articulate the right problem space and propose appropriate solutions to challenges encountered by individuals in specific contexts, such as healthcare. This abstract illustrates the application of the Design Thinking approach in the context of dementia caregiving. Emory’s Roybal Center for Caregiving Mastery conducted a three-part design studio workshop with African American dementia family caregivers to understand and identify prioritized solutions to their caregiving challenges. The workshops followed the Double-Diamond design process model that is divided into four phases (Discover, Define, Develop, and Deliver) and that emphasizes divergent and convergent modes of thinking. The process first encourages divergent thinking to explore a problem space and then employs convergent thinking to identify the salient problem and develop the right solution. The workshop’s Discover stage provided a broad and deep contextual understanding of the range of unmet needs African American caregivers experience in their interactions with healthcare personnel and systems. The Define phase enabled the convergent review and prioritization of the list of needs to be addressed. The Develop phase generated 17 intervention ideas. Finally, the Deliver phase focused on converging and validating the proposed interventions. The workshops concluded that having access to caregiver-focused resources supporting mental/physical self-care, such as support groups and peer programs, can be beneficial interventions to potentially improve knowledge, awareness, and caregiving mastery among African Americans American caregivers.

FEASIBILITY OF A COMMUNITY-LED VIRTUAL SELF-CARE PROGRAM FOR AFRICAN AMERICAN FAMILY CAREGIVERS

Abstract As the population of older adults in the U.S. increases, the need for family caregivers will mirror this growth. Despite a greater intensity of caregiving, African American caregivers are less likely to access formal support services and engage in self-care practices. To address the self-care needs of African American family caregivers, a community-engaged approach was used to develop and implement a half-day virtual self-care program. The development of the program was guided by the Individual and Family Self-Management Theory. This study evaluates experiences of program attendees. The specific aims are to examine the acceptability and practicality of the virtual self-care program. Women who self-identified as African American and a caregiver (i.e., taking care of another adult) were personally invited to attend. All attendees were emailed an electronic survey containing Likert-type and open-ended questions. Responses were examined for patterns and key content-related categories using inductive content analysis. Eleven of the sixteen attendees responded to the survey. All eleven strongly agreed (64%) or agreed (36%) that the event met their expectations and/or needs. In addition to providing opportunity to take time to engage in self-care, the event created a virtual space for women to focus on themselves. Women spoke about three distinct ways the event met their needs: 1) learning and trying new things, 2) access to resources, and 3) having a shared experience. These findings suggest that virtual programs may be used as an additional resource to support the health of African American women who care for older adults.

AFRICAN-AMERICAN ALZHEIMER’S CAREGIVER TRAINING AND SUPPORT PROJECT 2 PILOT STUDY: OUTCOMES ANALYSIS

Abstract The purpose of this study was to conduct an initial evaluation of the quantitative and qualitative outcomes of the African-American Alzheimer’s Caregiver Training and Support Project 2 (ACTS2). Quantitative objectives focused on assessing changes in caregiver depression and health status, as well as the severity of caregiving and self-care problems from pre- to post-intervention. Secondary quantitative analyses examined post-treatment changes in social support and caregiver burden. Qualitative objectives included examining caregivers’ perceptions of the effectiveness of in-session training activities, quality of relationships among participants and their facilitator, and appraisals of spiritual elements of the program. Nine African American family caregivers of older adults with dementia completed the ACTS2 lay pastoral care facilitator-led, telephone cognitive-behavioral intervention. The twelve-week training program included 7 skills-building groups and 5 individual problem-solving sessions. Significant improvements were found on the majority of dependent measures, including caregiver depression, health status, problem severity, and social support. Qualitative analysis highlighted the value caregivers placed on relationships with their co-participants and group facilitators, the role of spirituality within the program, and the importance of goal setting in improving caregiver distress and self-care. Convergence was found between quantitative and qualitative findings, particularly improvements in the domains of caregiver distress, health status, and social support. Overall, the findings of the pilot study were promising. Replication using a randomized controlled design with a larger sample size is needed to test the reliability of the findings. Benefits of tailoring intervention to caregivers’ sociocultural preferences and spiritual values are also addressed.

African American Alzheimer's Caregiver Training and Support Project 2 (ACTS2) pilot study: Outcomes analysis.

The purpose of this study was to conduct an initial evaluation of the quantitative and qualitative outcomes of the African American Alzheimer's Caregiver Training and Support Project 2 (ACTS2). Quantitative objectives focused on assessing changes in caregiver depression and health status, as well as the severity of caregiving and self-care problems from pre- to postintervention. Secondary quantitative analyses examined posttreatment changes in social support and caregiver burden. Qualitative objectives included examining caregivers' perceptions of the effectiveness of in-session training activities, quality of relationships among group participants and their facilitator, and appraisals of spiritual elements of the program. Nine African American family caregivers of older adults with dementia completed the ACTS2 lay pastoral care facilitator-led, telephone cognitive-behavioral intervention. The 12-week training program included seven skills-building groups and five individual problem-solving sessions. Significant improvements were found on the majority of dependent measures, including caregiver depression, health status, problem severity, and social support. Qualitative analysis highlighted the value caregivers placed on relationships with coparticipants and group facilitators, the role of spirituality in the program, and the importance of goal setting for improving caregiver distress and self-care. Convergence was found between quantitative and qualitative findings, particularly improvements in caregiver distress, health status, and social support. Overall, the findings of the pilot study were promising. Replication using a randomized controlled design with a larger sample size is needed to test the reliability of the findings. The benefits of tailoring intervention to caregivers' sociocultural preferences and spiritual values are also addressed. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

The Project ENABLE Cornerstone randomized controlled trial: study protocol for a lay navigator-led, early palliative care coaching intervention for African American and rural-dwelling advanced cancer family caregivers

BackgroundFamily caregivers play a vital, yet stressful role in managing the healthcare needs and optimizing the quality of life of patients with advanced cancer, from the time they are newly diagnosed until end of life. While early telehealth palliative care has been found to effectively support family caregivers, little work has focused on historically under-resourced populations, particularly African American and rural-dwelling individuals. To address this need, we developed and are currently testing Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African American and rural-dwelling patients with newly diagnosed advanced cancer.MethodsThis is a 2-site, single-blind, hybrid type I implementation-effectiveness trial of the Cornerstone intervention versus usual care. Cornerstone is a multicomponent intervention based on Pearlin’s Stress-Health Process Model where African American and/or rural-dwelling family caregivers of patients with newly diagnosed advanced cancer (target sample size = 294 dyads) are paired with a lay navigator coach and receive a series of six, brief 20–60-min telehealth sessions focused on stress management and coping, caregiving skills, getting help, self-care, and preparing for the future/advance care planning. Subsequent to core sessions, caregivers receive monthly follow-up indefinitely until the patient’s death. Caregiver and patient outcomes are collected at baseline and every 12 weeks until the patient’s death (primary outcome: caregiver distress at 24 weeks; secondary outcomes: caregiver: quality of life and burden; patient: distress, quality of life, and healthcare utilization). Implementation costs and the intervention cost effectiveness are also being evaluated.DiscussionShould this intervention demonstrate efficacy, it would yield an implementation-ready model of early palliative care support for under-resourced family caregivers. A key design principle that has centrally informed the Cornerstone intervention is that every caregiving situation is unique and each caregiver faces distinct challenges that cannot be addressed using a one-size-fits all approach. Hence, Cornerstone employs culturally savvy lay navigator coaches who are trained to establish a strong, therapeutic alliance with participants and tailor their coaching to a diverse range of individual circumstances.Trial registrationClinicalTrials.gov NCT04318886. Registered on 20 March, 2020.

Exploring Coping Strategies and Barriers in Dementia Care: A Mixed-Methods Study of African American Family Caregivers in Kentucky.

This study explores coping strategies and barriers to dementia care experienced by African American dementia caregivers in Kentucky. Utilizing a convergent mixed-method design integrating focus group and survey data on African American dementia caregivers recruited through churches in Kentucky (N = 28), we elucidate three coping strategies: love-based coping, religion-based coping, and family support. Results from survey data supported these themes, with over 90% of participants reporting that they provide care to give back to family members and for religious reasons. However, over half of the caregivers' reported strain due to three barriers identified by focus group data: time constraints, low support, and the high cost of formal care. This exploratory study highlights the importance of intervention tactics for African American dementia caregivers that focus not only on individual and family support but also community-based outreach and support.

A time for me: A virtual program to engage African American caregivers

To address the self-care needs of African American family caregivers, a community-engaged approach was used to develop and implement a half-day virtual self-care program. This study evaluates experiences of program attendees. All attendees were emailed an electronic survey containing Likert-type and open-ended questions. Responses were examined for patterns and key content-related categories using inductive content analysis. Eleven attendees responded to the survey. All 11 strongly agreed (64%) or agreed (36%) that the event met their expectations and/or needs. In addition to providing opportunity to take time to engage in self-care, the event created a virtual space for women to focus on themselves. Women spoke about three distinct ways the event met their needs: (1) learning and trying new things, (2) access to resources, and (3) having a shared experience. These findings suggest that virtual programs may be used as an additional resource to support the health of African American women caregivers.

A Lay Navigator-Led Early Palliative Care Intervention for African American and Rural Family Caregivers of Individuals with Advanced Cancer (Project Cornerstone): A Pilot Randomized Trial

A Lay Navigator-Led Early Palliative Care Intervention for African American and Rural Family Caregivers of Individuals with Advanced Cancer (Project Cornerstone): A Pilot Randomized Trial

Pain Management for Older Adults Living with Dementia: Perspectives from African American Family Caregivers

African American older adults living with dementia are at increased risk for under-assessed and under-treated pain. This risk is even greater for those of lower socioeconomic status. The purpose of this study is to characterize family caregivers’ perspectives on pain assessment and management in the context of advance care planning for their loved one living with dementia. A convergent mixed methods approach will be used to gather descriptive, cross-sectional data within a community-based participatory design process with the impetus to develop targeted interventions.