The intersection of social determinants of health and family care of people living with Alzheimer's disease and related dementias: A public health opportunity.

In this Perspective article, we highlight current research to illustrate the intersection of social determinants of health (SDOHs) and Alzheimer's disease and related dementia (ADRD) caregiving. We then outline how public health can support ADRD family caregivers in the United States. Emerging research suggests that family care for persons with ADRD is influenced by SDOHs. Public health actions that address these intersections such as improved surveillance and identification of ADRD caregivers; building and enhancing community partnerships; advancing dementia-capable health care and related payment incentives; and reducing the stigma of dementia and ADRD caregiving can potentially enhance the health and well-being of dementia caregivers. By engaging in one or all of these actions, public health practitioners could more effectively address the myriad of challenges facing ADRD caregivers most at risk for emotional, social, financial, psychological, and health disruption.

Using a Multiple-Case Study Design to Explore the Worship Experiences of Black Families Affected by Dementia.

OBJECTIVES: The purpose of this multiple-case study was to report on the worship experiences of Black families affected by dementia. METHODS: Data were collected through participant observations of family caregivers (n = 4) and persons living with dementia (n = 4) during worship services and semi-structured interviews with the family caregivers over six months. Data were initially analyzed case-by-case, then across-cases. RESULTS: Four overarching themes emerged: Welcoming church culture, Community support from the church, Engagement during worship service, and Connectedness between the caregiver and their family member living with dementia. Family caregivers reported that their family member with dementia was attentive and expressed moments of clarity during and immediately after worship services. CONCLUSIONS: Worship services can be tailored to support families affected by dementia and can promote engagement of the person living with dementia with church activities and family members. CLINICAL IMPLICATIONS: Health practitioners are encouraged to acknowledge the influence of religious practices within Black families affected by dementia and integrate them into interdisciplinary care plans and programs.

Attention control in a trial of an online psychoeducational intervention for caregivers.

In reports of randomized controlled trials, thorough description of the attention control condition has been recommended, yet is frequently lacking. The Tele-Savvy Caregiver program for informal caregivers of persons living with dementia was tested in a randomized controlled trial with an attention control condition. The purpose of this trial was to test Tele-Savvy's efficacy in reducing the negative effects of caregiving on caregivers, promoting quality of life for persons living with dementia, and improving caregiver mastery. We describe the design and implementation of and examine the outcomes associated with the attention control condition. Caregivers were randomized to the immediate Tele-Savvy (active condition), Healthy Living (attention control), or waitlist. The attention control content was focused on healthy lifestyle and was not intended to affect the outcomes that Tele-Savvy targeted. The attention control group was similar to Tele-Savvy in the intervention structure and duration: it consisted of seven weekly group videoconferences and 36 video lessons. Data on outcomes of caregivers and persons living with dementia were collected at baseline and 3 and 6 months postbaseline. Multilevel mixed effects models were used to determine changes in the outcomes. One hundred and eleven caregivers were randomized to the attention control condition (attrition 21.6%). Eighteen formative assessment interviews focusing on caregivers' experience in the attention control condition were conducted. The attention control condition completers had no statistically significant changes in the variables that Tele-Savvy targeted. These results may be used in the design and implementation of attention control conditions in behavioral intervention research.

Restoring trust in research among historically underrepresented communities: A call to action for antiracism research in nursing.

BACKGROUND: Health disparities and inequities among historically underrepresented populations represent a public health crisis. PURPOSE: This manuscript describes how use of an antiracism framework, an evidence-based approach to addressing systemic barriers, can assist with restoring trust in historically underrepresented communities that have experienced harm by researchers. METHODS: We also discuss the necessity of inclusive research teams and provide exemplars of how antiracism research principles and inclusive research teams can be used to mitigate harm and restore trust in historically underrepresented communities. DISCUSSION: Historical trauma and research misconduct have resulted in the mistrust of healthcare providers and health care systems among historically underrepresented individuals and communities. CONCLUSION: Nurse scientists are positioned to appreciate historical inequities and trauma and to intervene by developing culturally relevant interventions. This work, however, will only happen if communities that have suffered harm trust nurse scientists.

Stressors and Acceptability of Services Among Black Caregivers of Persons With Memory Problems.

The purpose of the current study was to identify stressors of Black family caregivers (FCGs) of persons with memory problems (PWMPs), services of interest, and barriers to use of these services. Black FCGs were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and affiliated geriatric clinics, media sources, and word-of-mouth referrals. Of 38 Black FCGs interviewed, 26 (68%) were female, 18 (47%) were employed, and 21 (55%) were adult children. Average age of FCGs was 52.11 years. Mean scores for the AD8 Dementia Screening Scale (mean = 13.95, SD = 2.17) and Clinical Dementia Scale Sum of Boxes (mean = 7.29, SD = 0.87) were higher than clinical cutoffs. The most common stressors for Black FCGs were PWMPs' inability to remember who they were, managing care recipients' financial affairs, and managing PWMPs' comorbid conditions. FCGs were most interested in educational material regarding treatment and diagnosis (55.3%), caring for people with dementia (52.6%), understanding dementia (52.6%), and financial/legal services (52.6%). FCGs stated that transportation difficulties and the need for a relief person were barriers to use of services. Results suggest that Black FCGs may be more likely to participate in interventions that include virtual conferencing modalities. [Journal of Gerontological Nursing, 48(6), 13-18.].

The Alter Program: A Nurse-Led, Dementia-Friendly Program for African American Faith Communities and Families Living With Dementia.

Dementia is a stigmatizing condition requiring enhanced awareness and understanding. Churches are a trusted source of support for African Americans, a demographic disproportionately affected by dementia. However, many African American churches are not equipped with the knowledge and means to provide safe environments, resources, and spiritual and social support for their parishioners living with dementia and their families. This protocol is written to detail the design and implementation of a nurse-led, dementia-friendly congregation program, Alter. The Alter program was developed to increase dementia awareness, develop a supportive, faith-based dementia-friendly infrastructure, and create a community supporting the well-being of African Americans living with dementia and their families. Engagement in this program aims to improve brain health status of older adults, improve physical and mental health outcomes, reduce dementia stigma, and enhance personal agency. Improved outcomes for persons living with dementia translate into lower use of acute and emergency services due to more stability in community care. It is expected that the churches participating in this program will be recognized by their community as a great resource for dementia information and support. The long-term goal of the Alter program is to be widely adapted in various health systems to reduce health disparities associated with dementia in the African American community.

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.

Correlates of Sleep Disturbance Experienced by Informal Caregivers of Persons Living with Dementia: A Systematic Review.

OBJECTIVES: This study aims to comprehensively review and update the literature concerning the correlates of sleep disturbance among caregivers of persons living with Alzheimer's disease and related dementias to identify gaps in the literature and antecedent targets for interventions. METHODS: We searched PubMed, CINAHL, PsycINFO, and Embase using terms related to "sleep," "caregiver," and "dementia." RESULTS: Thirty-six articles were included in this review. Based on the antecedents within the 3P model of insomnia, predisposing factors associated with caregiver sleep included caregiver demographics, and physiological factors like genotype and biomarkers. Precipitating factors related to caregiver sleep included caregiving status and responsibilities, and person living with dementia factors. CONCLUSIONS: Sleep disturbance is a significant issue for caregivers of persons living with dementia. However, this review has identified multiple precipitating factors that are modifiable targets for interventions to improve or enhance caregiver sleep. CLINICAL IMPLICATIONS: Numerous predisposing and precipitating factors contribute to caregivers of persons living with dementia being susceptible to sleep disturbance. Healthcare providers should ask patients about their caregiving status during annual visits. Healthcare providers should also evaluate caregivers' sleep patterns, and the predisposing and precipitating factors of sleep disturbance, with a focus on the modifiable factors, to enable timely intervention.

A Framework for Mobilizing Health Care to Respond to the Community Within the COVID-19 Pandemic.

Cultural mistrust of government with regard to health issues has pressed the need to engage trusted community leaders with influence and reach in disproportionately affected communities to ensure that essential public health activities related to COVID-19 occur among populations experiencing disproportionate impact from the pandemic. In April of 2020, a Georgia-based integrated academic health care system created a Community Outreach and Health Disparities Collaborative to unite trusted community leaders from faith-based, civic, and health-sector organizations to work with the health system and Emory University to develop tailored approaches and mobilize support within the context of the communities' cultural and individual needs to reduce the burden of COVID-19. We describe the framework used to join health care and academic collaborators with community partners to mobilize efforts to address the disproportionate impact of COVID-19 on racial, ethnic, and socioeconomic minority groups. The framework outlines a series of steps taken that led to a community-driven collaboration designed to engage local influential community leaders as partners in improving access to care for disproportionately affected communities, collaborations that could be replicated by other large health care systems. This framework can also be applied to other chronic diseases or future public health emergencies to improve communication, education, and health care access for communities experiencing disproportionate impact.

Using poetry as data to explore daily and formal care decision making within African American dementia dyads.

There is limited research exploring how daily and formal care decision making occurs within African American dementia dyads as well as how these dyads navigate decision making across the dementia trajectory. Through semi-structured interviews, five African American dementia dyads shared their decision-making processes. We used a multimethod approach to the analysis of data, including qualitative and quantitative content analysis and the creation of I Poems. This novel use of I Poems provided a uniquely personal account of the lived experiences of the African American persons living with dementia, while other analyses revealed that within dyads, daily care decision making was led by African American persons living with dementia, whereas formal care decision making varied between dyads. There was intra-dyad congruence regarding who the final decision maker was in daily and formal care. Clinicians and researchers may be able to tailor interventions based on the dyad's involvement in these decision-making processes.

Trust of Nursing Home Staff Caring for Residents with Advanced Dementia: A Qualitative Descriptive Study of Family Caregivers' Perspectives.

BACKGROUND/OBJECTIVES: Studies of interpersonal trust within nursing homes (NHs) is limited. This study aimed to describe the perspectives of interpersonal trust in NH staff among family caregivers of residents with advanced dementia. Additionally, comparisons of Black and White caregivers' perspectives were also explored. DESIGN: We used data generated from a parent study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) to examine the experience of trust from the family caregivers' perspectives. PARTICIPANTS: Data generated from interviews with 44 family caregivers of residents with advanced dementia (Black n = 19 and White n = 25) were analyzed using thematic analysis. RESULTS/CONCLUSIONS: While both Black and White family caregivers experienced trust and mistrust, Black caregivers more often experienced differential mistrust. As differential mistrust is a new concept relative to trust, additional research is required to elucidate its meaning. DESIGN: We used data generated from a parent study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) to examine the experience of trust from the family caregivers' perspectives. PARTICIPANTS: Data generated from interviews with 44 family caregivers of residents with advanced dementia (Black n = 19 and White n = 25) were analyzed using thematic analysis. RESULTS/CONCLUSIONS: While both Black and White family caregivers experienced trust and mistrust, Black caregivers more often experienced differential mistrust, trust for certain staff members and mistrust of others. As differential mistrust is a new concept relative to trust, additional research is required to elucidate its meaning.

"Everything is Either Sent by God or Used by God": An Exploratory Study on the Impact of COVID-19 Upon the Religious Lives of Black Families Living with Dementia.

The purpose of this research study was to explore the impact of COVID-19 on church engagement for Black families affected by dementia in the USA. Semi-structured interviews were conducted with current caregivers, church leaders, and persons with dementia (n = 16). The following themes emerged: (a) Ability to continue religious practices, (b) Increased church engagement, (c) Importance of fellowship, (d) Role of technology, and (e) New normal. As the Internet becomes the new church building, online worship services enabled more families affected by dementia to engage. Many church leaders expressed the intent of continuing to provide online worship services post-pandemic. Families highlighted their need to fellowship with other congregants. Technology was perceived as a double-edged sword serving as both a motivator and a barrier to religious engagement. These findings will support faith leaders in understanding the needs of their congregants during the COVID-19 pandemic, such as allowing families living with dementia to continue engaging in religious practices and living in meaningful ways.

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.

Missing the Mark: The Complexity of African American Dementia Family Caregiving.

Alzheimer's disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America's annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families.

"It's just part of life": African American daughters caring for parents with dementia.

The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset (N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.

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.

Testing Tele-Savvy: Protocol for a randomized controlled trial.

Many informal caregivers of persons with dementia suffer adverse health consequences. Although established psychoeducation programs are known to benefit caregivers, attending in-person programs is challenging for them. To address this challenge, the Savvy Caregiver Program, an evidence-based psychoeducation program with demonstrated effectiveness for caregiving and disease-related outcomes, was transformed into an on-line program, Tele-Savvy. This article describes the rationale for and design of a prospective longitudinal randomized controlled trial (targeted N = 215), currently underway. The trial aims to establish Tele-Savvy's efficacy in (i) reducing the negative effects of caregiving on caregivers; (ii) promoting care recipients' quality of life; (iii) improving caregiver mastery; and to explore (iv) Tele-Savvy's efficacy among caregivers of different races/ethnicities. The mediating role of mastery will be assessed. Participants are randomized to the active condition (immediate Tele-Savvy participation), attention control, or usual care. Participants in the two latter conditions will complete Tele-Savvy 6 months post-baseline. Multilevel mixed effects models will be used to examine changes in outcomes and to model group by time (months since baseline) interactions. The exploratory aim will be addressed using analysis of covariance and qualitative analysis. This trial's results may be used by healthcare and community organizations to implement Tele-Savvy in dementia care, increasing caregivers' access to this evidence-based intervention.

Challenges to aging in place for African American older adults living with dementia and their families.

A culturally informed community health assessment was conducted to explore the community context of care for older adults in African American urban neighborhoods. The purpose of this study is to explore the challenges to aging in place for African American older adults living with dementia and their family members. Data collection and analysis were conducted as concurrent iterative procedures between photographs, media clippings, semi-structured interviews (N = 24), observation notes, and journaling. Content analysis revealed shame, improper housing, financial constraints, resource inadequacy, transportation concerns, and knowledge deficit as common challenges faced by the older adults and their families to receiving health services to support aging in place within urban neighborhoods. Data from this report are to inform clinicians, community partners, families, and service organizations, to promote uptake of future research and programing to improve outcomes for African American older adults living with dementia and their family members.

Comparing the Effect of a Moderate Physical Activity Intervention on the Mental Health Outcomes of African American and Caucasian Dementia Family Caregivers: A Secondary Data Analysis.

Increased attention to the effects of the stressful demands of caregiving on the mental health of dementia caregivers has resulted in the development of numerous interventions. The current study is a secondary analysis of a randomized controlled trial that tested a 12-month moderate physical activity intervention with dementia caregivers. Our secondary data analysis examined racial differences in caregiver mental health outcomes including subjective burden, depressive symptoms, and positive affect, as well as differences in physical activity. A total of 211 community-dwelling dementia family caregivers were randomly assigned to a 12-month Enhanced Physical Activity (treatment) Intervention (EPAI) or a Caregiver Skill Building (control) Intervention (CSBI). Of these, 34 African American and 80 Caucasian caregivers completed the study. At baseline, race was associated with subjective burden and positive affect, but not with depressive symptoms. Post intervention (12 months), there were no racial differences in subjective burden or depressive symptoms. However, race was significantly associated with decreased positive affect (p = 0.003) and decreased total minutes of physical activity (p = 0.012). Findings suggest that the mental health needs of African American caregivers warrant additional exploration, where physical activity may be of benefit. These findings provide a cultural perspective to consider during intervention development for future nurse-driven research.