Dementia Caregiver Experiences: Insights From a Telephone-Based Support Program.

Dementia caregivers face daunting challenges as both the oldest subpopulation of those providing unpaid care and the most at risk of adverse health outcomes as a result of their role, including depression, anxiety, and increased mortality. To better understand the experiences and needs of dementia caregivers, a qualitative content analysis was conducted of secondary data extracted from call logs (N = 569) recorded by a provider-initiated, telephone-based support program. Experiences identified from the call logs were coded, categorized, and ranked to determine the most prevalent dementia caregiving-related experiences. Features of the program, particularly the semi-structured call format and directionality of calls, helped to uniquely capture common experiences of family caregivers and their day-to-day concerns. Findings from this analysis reflect the high prevalence of caregiver mental and emotional health-related concerns. This analysis supports the development of interventions that align with the experiences of dementia caregivers.

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.

Synthesizing Best Practices to Promote Health Equity for Older Adults Through Community-Engaged Research.

Achieving health equity requires creating evidence that reflects the nuance and diversity of experiences among populations disproportionately impacted by age- and race-related disparities. Community-engaged research (CEnR) is one way to pursue equity in research on health and aging to ensure the relevance and translational potential of findings. The current review synthesizes best practices regarding CEnR that promote health equity among older adults, including an overview of CEnR, benefits, and fundamental principles, and three research exemplars from the authors' CEnR. Finally, we discuss these best practices and considerations for advancing CEnR to reduce health disparities experienced by historically underserved older adults and their families. [Research in Gerontological Nursing, 17(1), 9-16.].

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.

"Just Join Them": Improv and Dementia Care.

Improvisational (improv) theatre skill development holds promise for improving the dementia capability of care partners. In this report, we present analysis of data from an ongoing study on meaningful engagement and quality of life among assisted living (AL) residents with dementia. Using ethnographic methods, we collected data from persons with dementia (n = 59) and their care partners (n = 165) in six diverse AL communities each studied for one year. Building cumulatively on past work and existing literature, we demonstrate the potential benefits of training care partners to use improv skills. We discuss implications, including the need for intervention research.

The Effect of Tele-Savvy on Sleep Quality and Insomnia in Caregivers of Persons Living with Dementia.

Introduction: Sleep disturbance is prevalent in caregivers of persons living with dementia (PLwD). Tele-Savvy, a 7-week virtual psychoeducational intervention, enhances caregivers' competence and self-care, and reduces depression. While not explicitly designed to do so, Tele-Savvy can potentially improve caregivers' disturbed sleep. The present study aimed to examine the longitudinal effects of Tele-Savvy on caregivers' sleep quality and insomnia. Methods: This was a secondary data analysis of a 3-arm randomized control trial [Tele-Savvy (active treatment), Healthy Living (attention control), and usual care (waitlist control)]. Multilevel mixed modeling with intent-to-treat principles tested for group, time, and group-by-time effects. Effect sizes were estimated for all changes from baseline to the initial 6-month post-intervention point. Following completion of the 6-month post-randomization delay, we examined combined outcomes for Tele-Savvy. Results: Participants (n=137; mean age 64.7 years) were predominantly female (68.6%) and White (68.6%). We found no initial group-by-time effects for the Pittsburgh Sleep Quality Index (PSQI) and the Insomnia Severity Index (ISI). For the combined Tele-Savvy group, there was a statistically significant improvement in ISI scores across time (p=0.050). The combined Tele-Savvy effect size for PSQI was d=0.126 and ISI was d=0.310. Discussion: Tele-Savvy resulted in a significant long-term reduction in insomnia symptoms in this sample of caregivers of PLwD and demonstrated a positive trend for improvement in their sleep quality. Since sleep disturbance is so prevalent among caregivers of PLwD, the inclusion of sleep health education into psychoeducation caregiver interventions may yield even better outcomes for caregivers.

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.

"I Didn't Know I Needed to Be Still": Experiences of Black Dementia Caregivers Attending Tailored Online Worship Services.

The current study aimed to determine the feasibility and preliminary efficacy of culturally appropriate online worship services for Black dementia caregivers. Researchers met online with families six times over 8 weeks. Each meeting consisted of families viewing a short, uniquely tailored worship service. Preand post-surveys were conducted, and caregivers participated in in-depth, semi-structured interviews to discuss their experiences with the online worship services. All caregivers (N = 24) identified as Christian and African American. There was no significant mean difference between pre- and post-survey results, but there was a trend toward improving perception of caregiver role, caregiver burden, and dyadic relationship. Observations and interviews revealed two themes, Experiences and Feasibility of Engaging With Culturally Appropriate Online Worship Services. Although the preliminary efficacy of the online worship services remains to be investigated, our results suggest resources developed for caregivers of people living with dementia should be carefully tailored to ensure they are culturally appropriate and responsive. [Research in Gerontological Nursing, 16(6), 273-282.].

Sleep Profiles of Caregivers for Persons Living with Dementia: A Qualitative Study.

Sleep disturbance is prevalent among caregivers of people living with dementia. However, gaps exist about caregivers' sleep patterns before and during their caregiving trajectory. This exploratory secondary analysis using a qualitative descriptive approach aimed to (1) identify and describe current caregivers' patterns of change in sleep before and during caregiving, and (2) understand caregivers' perceptions of their current sleep compared to their pre-caregiving sleep. We conducted semi-structured interviews with 19 caregivers taking part in a larger randomized controlled trial. Participants were female (n = 11), white (n = 13) and on average 63 years of age. Interview questions focused on caregivers' sleep patterns. The interviews were audio-recorded using a videoconferencing platform and ranged from 20 to 45 minutes. We conducted thematic analysis of the interview transcripts. Three distinct caregiver-sleep profiles emerged from the qualitative data: changed and dissatisfied, changed and satisfied, and unchanged and dissatisfied. Caregivers whose sleep was categorized as changed reported a difference when comparing their current sleep pattern to their pre-caregiving sleep pattern. This was usually a change from good to poor sleep. Caregivers whose sleep was unchanged had poor sleep pre-caregiving and continued to have poor sleep during caregiving. Caregivers also reported being satisfied or dissatisfied with their current sleep pattern, defined in terms of distress and impairment. These three subtypes highlight the heterogeneity of caregivers' sleep experiences and debut a useful clinical framework with which to identify, categorize, and target caregivers at risk for sleep disturbance, many who may be ready to engage in behaviors to improve their sleep. Knowing caregivers' sleep profiles will enable health care providers and researchers to determine caregivers' needs and readiness for interventions then work collaboratively with them to improve their sleep problems.

Spiritual Needs of Older Adults Living with Dementia: An Integrative Review.

Older adults living with dementia experience progressive decline, prompting reliance on others for spiritual care and support. Despite a growing interest in studying persons living with dementia (PLwDs), empirical evidence on the spiritual needs of PLwDs has not been synthesized. Using the Whittemore and Knafl method, this integrative review examined the literature from 2000 to 2022 on the spiritual care needs of PLwDs. We sought to identify characteristics of the spiritual needs of PLwDs and ways to address them. The ATLA Religion, CINAHL, PsycINFO, PubMed, and Socindex databases were used to search the literature, and 12 peer-reviewed articles met the inclusion criteria. Spiritual care needs varied across studies. Overall, findings support the importance of identifying PLwDs' religious and spiritual backgrounds to inform person-centered care. Spiritual needs were identified as verbal and non-verbal expressions related to past meaning and religious and spiritual background and were not consistently addressed in care. Providers reported observing spiritual distress in the mild stage prompting the need for spiritual care. There is a great need for dementia-specific spiritual assessment tools and spiritual care interventions to support spiritual well-being in dementia care. Spiritual care involves facilitating religious rituals and providing spiritual group therapy and religious and spiritual activities.

Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.

BACKGROUND: Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood. MATERIALS AND METHODS: Assessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube-feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations. Framework analyses revealed themes and subthemes within the following a priori domains: understanding of advanced dementia and care decisions, preferences related to end-of-life care, advance care planning, decision-making about managing feeding problems and acute illness, communication and trust in NH providers, support, and spirituality in decision-making. Matrix analyses explored similarities/differences by proxy race. Data were collected from June 1, 2018 to July 31, 2021. RESULTS: Among 44 proxies interviewed, 19 (43.1%) were Black, 36 (81.8%) were female, and 26 (59.0%) were adult children of residents. In facilities with the lowest intensity of care, Black and White proxies consistently reported having had previous conversations with residents about wishes for end-of-life care and generally better communication with providers. Black proxies held numerous misconceptions about the clinical course of advanced dementia and effectiveness of treatment options, notably tube-feeding and cardiopulmonary resuscitation. Black and White proxies described mistrust of NH staff but did so towards different staffing roles. Religious and spiritual beliefs commonly thought to underlie preferences for more intense care among Black residents, were rarely, but equally mentioned by race. CONCLUSIONS: This report refuted commonly held assumptions about religiosity and spirituality as drivers of racial variations in advanced dementia care and revealed several actionable facility-level factors, which may help reduce these variations.

Interrupting Biases in the Experience and Management of Pain Nurses can help address challenges faced by racially and ethnically diverse patients and caregivers.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. The articles in this new installment of the series provide practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Booker, S.Q., et al. Interrupting Biases in the Experience and Management of Pain. Am J Nurs 2022; 122(9): 48-54.

Understanding Capacity and Optimizing Meaningful Engagement among Persons Living with Dementia.

Meaningful engagement is a key dimension of quality of life among persons living with dementia, yet little is known about how to best to promote it. Guided by grounded theory methods, we present analysis of data collected over a 1-year period in four diverse assisted living (AL) communities as part of the study, "Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia." Our aims are to: (a) learn how meaningful engagement is negotiated among AL residents with dementia and their care partners; and (b) identify how to create these positive encounters. Researchers followed 33 residents and 100 care partners (formal and informal) and used participant observation, resident record review, and semi-structured interviews. Data analysis identified "engagement capacity" as central to the negotiation of meaningful engagement. We conclude that understanding and optimizing the engagement capacities of residents, care partners, care convoys, and settings, are essential to creating and enhancing meaningful engagement among persons living with dementia.

Transgender Adults From Minoritized Ethnoracial Groups in the U.S. Report Greater Subjective Cognitive Decline.

OBJECTIVES: Investigate subjective cognitive decline (SCD) among 4 study groups consisting of cisgender and transgender adults who are from minoritized ethnoracial groups (i.e., minoritized ethnoracial transgender, minoritized ethnoracial cisgender) and White cisgender and transgender adults aged 45+ (i.e., White transgender, White cisgender) to determine the odds of SCD by group and to test for group differences. METHODS: Data from the 2015-2020 Behavioral Risk Factor Surveillance System were used in a modified case-control approach to perform an intercategorical intersectional study. Each transgender participant was matched to 2 cisgender men and 2 cisgender women, on state, ethnoracial identity, and age. Multivariable logistic regressions modeled SCD odds by group and post hoc contrasts estimated pairwise odds ratios comparing the SCD odds for each combination of groups. RESULTS: SCD prevalence was highest among minoritized ethnoracial transgender (21.6%), followed by White transgender (15.0%), minoritized ethnoracial cisgender (12.0%), and White cisgender (9.0%). After accounting for age, education, and survey year, the odds of SCD were higher in minoritized ethnoracial transgender when compared to White cisgender (adjusted odds ratio [aOR] = 2.51, 95% confidence interval [CI]: 1.59-3.96) and minoritized ethnoracial cisgender (aOR = 1.89, 95% CI: 1.16-3.09). The odds of SCD were higher in White transgender compared to White cisgender (aOR = 1.66, 95% CI: 1.20-2.30). DISCUSSION: When considering the intersection of transgender and ethnoracial identities, we found that transgender adults from minoritized ethnoracial groups reported higher odds of SCD when compared to cisgender adults from minoritized ethnoracial groups. Additional studies are needed to understand the relationship between racialized and gendered inequities in cognitive impairment and how specific mechanisms of systemic transphobia and racism may contribute to this inequity.

Validation of a Measure of Role Overload and Gains for End-of-Life Dementia Caregivers.

OBJECTIVES: Caregiving stress process models suggest that heterogeneous contexts differentially contribute to caregivers' experiences of role overload and gains. End-of-life (EOL) caregivers, especially EOL dementia caregivers, facing unique challenges and care tasks, may experience role overload and gains in different ways than other caregivers. This study evaluates measurement invariance of role overload and gains between EOL caregivers and non-EOL caregivers and between EOL dementia and EOL non-dementia caregivers. METHODS: We utilized role gains and overload data from 1,859 family caregivers who participated in Round 7 of the National Study of Caregiving. We ran confirmatory factor analyses to investigate the factorial structure across all caregivers and then examined the structure's configural, metric, and scalar invariance between (a) EOL caregivers and non-EOL caregivers and (b) EOL dementia and EOL non-dementia caregivers. RESULTS: Across the entire sample, the two-factor overload and gains model had good fit (χ 2(19) = 121.37, p < .0001; RMSEA = .053, 90% CI = [.044, .062]; CFI = .954; TLI = .932). Tests of invariance comparing EOL caregivers to non-EOL caregivers and EOL dementia caregivers to EOL non-dementia caregivers maintained configural, metric, and partial scalar invariance. Latent mean comparisons revealed that EOL caregivers had higher role overload (p = .0002), but no different role gains (p = .45), than non-EOL caregivers. Likewise, EOL dementia caregivers had higher role overload (p = .05), but no different role gains (p = .42), than EOL non-dementia caregivers. DISCUSSION: Results offer both a deeper theoretical understanding of end-of-life dementia caregivers' experiences of role overload and gains, and a practical tool to measure those experiences.

Using meta-research to foster diverse, equitable, and inclusive collaborative research networks.

Fostering diverse, equitable, and inclusive collaborative research networks is important for advancing the field of aging research. Despite sizeable investment in research consortia and career development programs, there has been only moderate progress toward diversifying the research workforce studying aging. Without critically examining what works and what does not, continuing to place more resources into these same strategies may not result in a substantial improvement in diversity or the creation of collaborative networks. Using meta-research to rigorously evaluate potential strategies to promote diversity and collaboration may yield important insights that can be used to improve upon current efforts. For this reason, we sought to describe meta-research and highlight how its principles can be used to achieve the aging research community's collaboration and diversity goals.

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.

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.

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.