Caregiving While Black: A Novel, Online Culturally Tailored Psychoeducation Course for Black Dementia Caregivers.

BACKGROUND AND OBJECTIVES: Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers. RESEARCH DESIGN AND METHODS: A multimethod approach was carried out to assess Caregiving While Black (CWB), including pre-post surveys and in-depth interviews. This psychoeducation course addresses the cultural realities of caring for a person living with dementia as a Black American. Caregivers engaged in online asynchronous education related to healthcare navigation, home life management, and self-care. Primary (caregiving mastery) and secondary outcomes (anxiety, depression, perceived stress, burden, perceived ability to manage behavioral and psychological symptoms) were assessed at baseline and post-course (10 weeks). RESULTS: Thirty-two Black caregivers from across the United States completed the course within the allotted time frame. Paired sample t test analyses revealed significant reductions in caregiver burden and role strain. Caregiver mastery from baseline to completion increased by 0.45 points with an effect size of 0.26 (Cohen's d). Twenty-nine caregivers participated in an optional post-course interview, and thematic analysis led to the construction of 5 overarching themes: Comfortability with a Culturally Tailored Course; Experiences Navigating the Course Platform; Utility of Course Resources; Time as a Barrier and Facilitator; Familial and Community Engagement. DISCUSSION AND IMPLICATIONS: Pilot findings convey a need to continue creating and receiving feedback on culturally tailored psychoeducation programs for dementia caregivers. The next steps include applying results to fuel the success of the next iteration of CWB.

Tele-Savvy Outcomes of Non-Hispanic Black American and White Caregivers.

BACKGROUND AND OBJECTIVES: Tele-Savvy is a synchronous/asynchronous psychoeducation program for caregivers of community-dwelling persons living with Alzheimer's disease and related dementias (ADRD) designed to increase caregivers' competence and confidence (mastery) in caregiving. Its overall efficacy was tested in a randomized controlled trial. RESEARCH DESIGN AND METHODS: This secondary data analysis examined the caregiver mastery and psychological health (i.e., perceived stress, depressive symptoms, and burden) outcome of 153 non-Hispanic Black American and White caregivers (31 non-Hispanic Black American and 122 White caregivers) from baseline to 6 months postintervention. Given the difference in the sample sizes of Black and White caregivers, a descriptive post hoc subgroup analysis was conducted of 21 non-Hispanic Black American and 20 White adult children and grandchildren caregivers. RESULTS: In the overall sample, Black American caregivers demonstrated higher levels of mastery and lower levels of distress than White caregivers at baseline and across all time points. Over time, White caregivers, but not Black American caregivers, experienced significantly improved levels of mastery and significantly lowered levels of depression. Within the subgroup analysis, except for a moderate effect size in the management of situation scores over time among Black American adult children caregivers, similar results were obtained. DISCUSSION AND IMPLICATIONS: The findings highlight the strengths and shortcomings of the Tele-Savvy program in improving caregiver mastery and reducing negative psychological health outcomes. Intentionally tailoring the Tele-Savvy program to certain racial and caregiving groups may hold promise in meeting the needs of more ADRD caregivers. CLINICAL TRIAL REGISTRATION: NCT03033875.

Experiences of Black American Dementia Caregivers During the COVID-19 Pandemic.

Dementia caregivers are responsible for the daily care and management of individuals who are among the most vulnerable to the serious consequences of COVID-19. This qualitative study explores the experience of Black dementia caregivers during the COVID-19 pandemic in the United States. Nineteen Black dementia caregivers were recruited to participate in semi-structured focus groups held in April 2021. Four overarching themes were constructed during analysis: social isolation, decreased well-being, the good and bad of telehealth, and challenges fulfilling health care needs. The results indicate the experience of Black dementia caregivers overlaps with existing literature on the experiences of dementia caregivers of other races during COVID-19. These results can assist in addressing the specific needs and improving the experiences of dementia caregivers in current and future public health crises.

"Falling between the cracks": Experiences of Black dementia caregivers navigating U.S. health systems.

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is "broken." Gaps in the health system can lead to people [as one caregiver passionately expressed] "falling between the cracks," in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a "person of color" contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.

Perceptions and Attitudes Toward Dementia in Predominantly African American Congregants.

The purpose of this study was to identify the perceptions and attitudes of African American congregants toward dementia before and after attending a dementia-focused workshop. Six churches in Metropolitan Atlanta, Georgia, hosted the workshops. Attendees (N = 171) participated in a free association exercise to evaluate their perceptions and attitudes toward dementia. Before and after the workshop, participants wrote words and phrases that occurred to them when they thought of dementia. Content analysis was used to identify themes. Before the workshop, participants' responses tended to include negative language (e.g., fear, memory loss, sadness). After the workshop, participants expressed more positive words (e.g., support, hopefulness, caring). These findings suggest that education can change congregants' perceptions about dementia and potentially reduce dementia-associated stigma. This change will allow families to feel comfortable both interacting with and seeking help from those in their faith communities.

A dementia-friendly church: How can the African American church support families affected by dementia?

Dementia, including Alzheimer's disease, is affecting the African American community at alarming rates, as African Americans have a greater risk of dementia than other races. The African American church has traditionally been a safe haven where families go for support and healing. However, many churches are not equipped to support families living with dementia. The purpose of this study was to explore ways African American churches can be dementia-friendly to support families affected by dementia. A qualitative descriptive design was used to collect data from 12 African American community stakeholders. Participants were inclusive of caregivers, church leaders, community members, and service providers. During the semi-structured interviews, participants were asked to share characteristics of a dementia-friendly church. Thematic analysis was performed using data from interviews, researcher's journal, and field notes. Responses described a dementia-friendly church as (a) resourceful; (b) welcoming and friendly; (c) inclusive and comfortable; (d) understanding and accepting; and (e) concerned about personal well-being. This study has wide implications not only for African American churches and families, but also for families living with dementia outside of African American faith communities. These findings allow for faith leaders and churches to begin the process of becoming dementia-friendly, thus enabling congregations, communities, and persons with dementia to continue living in meaningful ways. In conclusion, churches are a source of religious support and provide access to resources for families in difficult times. Thus, it is imperative for African American churches to explore ways to best support and meet the needs of families living with dementia.

Promoting dementia awareness in African-American faith communities.

INTRODUCTION: Alzheimer's disease and other dementia-related disorders are affecting the African-American community at alarming rates. African-American churches have traditionally been places of refuge where families go for support. However, many churches lack programs or resources to support families affected by dementia. In response, a nurse-led interdisciplinary collaborative partnered with churches to promote dementia awareness through education. PURPOSE: The purpose of this analysis was to (a) describe the demographics of those seeking dementia education in African-American faith communities; (b) identify prior knowledge of dementia community resources; and (c) determine the preliminary usefulness of the education provided. METHODS: Over the course of 16 months, 202 individuals attended nine educational sessions hosted by five churches across metropolitan Atlanta. Quantitative surveys were used to collect demographics and evaluate the educational sessions. RESULTS: The majority of attendees were African-American adults (91%), women (75%), and unaware of dementia resources (66%). Several attendees identified themselves as church leaders, community/church members, caregivers, and/or healthcare professionals. Attendees expressed the educational content was applicable to themselves or their families. CONCLUSION: Results help identify ways to alter and/or strengthen the educational content and serve as a guide for developing culturally relevant, faith-based community programs.

Designing Worship Services to Support African-American Persons Living with Dementia.

The church has played an integral role in the African-American community for a number of years. With the growth in population of African-American older adults living with dementia, it is critical for the church to understand how they can support these individuals in continuing their engagement in meaningful religious activities. The purpose of this qualitative descriptive study was to explore how to design or modify worship services to support African-Americans living with dementia. Interviews were conducted with church leaders, current and former caregivers, and service providers (n = 12). Analysis of their responses revealed worship services should include components in relation to the following categories: "simplicity," "support," "imagery and sound," and "music." Although participants held different views on the delivery of worship services for persons living with dementia, interview results provided key elements on how worship services can be meaningful and supportive of African-Americans living with dementia.

Dementia-friendly faith village worship services to support African American families: Research protocol.

African American caregivers for persons living with dementia frequently experience emotional strain, burden, social isolation, and depression. One source of support for them when in distress is their church community. However, many African American churches do not have programs to support families and congregants living with dementia. Dementia often restricts persons living with dementia and their caregivers from attending church. Both become increasingly uncomfortable in church settings due to fear of embarrassment, uncertainty about the behavior of the person living with dementia, and shame. Church attendance and religion has been shown to be beneficial for caregivers and elders living with dementia. However, there is little work exploring how involvement in religious practices together (caregivers and persons living with dementia) might enhance the quality of life for these families. This protocol is written to detail the designing and testing of the feasibility and preliminary efficacy of a dementia-friendly faith village worship service. In the study, we will examine how dementia-friendly faith village worship services support the well-being of caregivers and care recipients in three African American churches through observation, interviews, and surveys. A sample of 30 dyads of African American caregivers and persons living with dementia will be asked to attend six modified worship services together over 6 months. In this study, we hope to demonstrate the significant role of churches in the lives of African American family caregivers and persons living with dementia and show that a faith-based, family-oriented approach can promote a greater quality of life for African American families living with dementia.