Associations between TCA cycle plasma metabolites and fatigue in black females with systemic lupus erythematosus: An untargeted metabolomics pilot study.

OBJECTIVE: In this pilot study, we used untargeted metabolomics to identify biochemical mechanisms or biomarkers potentially underlying SLE-related fatigue. METHODS: Metabolon conducted untargeted metabolomic plasma profiling using ultrahigh performance liquid chromatography/tandem mass spectrometry on plasma samples of 23 Black females with systemic lupus erythematosus (SLE) and 21 no SLE controls. Fatigue phenotypes of general fatigue, physical fatigue, mental fatigue, reduced activity, and reduced motivation were measured with the reliable and valid Multidimensional Fatigue Inventory (MFI). RESULTS: A total of 290 metabolites were significantly different between the SLE and no SLE groups, encompassing metabolites related to glycolysis, TCA cycle activity, heme catabolism, branched chain amino acids, fatty acid metabolism, and steroids. Within the SLE group, controlling for age and co-morbidities, TCA cycle metabolites of alpha-ketoglutarate (AKG) and succinate were statistically significantly associated (p < .05) with physical and general fatigue. CONCLUSION: While pervasive perturbations in the entire TCA cycle have been implicated as a potential mechanism for fatigue, our results suggest individual metabolites of AKG and succinate may be potential biomarkers or targets of intervention for fatigue symptom management in SLE. Additionally, perturbations in heme metabolism in the SLE group provide additional insights into mechanisms that promote systemic inflammation.

Factors related to cognitive performance among black caregivers of persons living with a chronic illness: An exploratory study.

This study investigated factors associated with cognitive performance among Black caregivers of persons living with two chronic conditions: dementia or cancer. Fifty-six Black caregivers of people living with dementia or cancer were recruited from clinic and community sources. Variables measured included: depression, anxiety, stress, sleep, fatigue, and caregiver burden. Cognitive performance was assessed using the Montreal Cognitive Assessment (MoCA). Descriptive statistics and non-parametric analyses were conducted to identify factors related to MoCA scores. Caregivers were 58.3 years of age and predominantly female. The average MoCA score was 25.23. Gender and education, along with positive appraisal of caregiving were significantly associated with cognitive performance. Several other factors approached significance including cohabitation with the care recipient, fatigue, and stress due to perceived individual and institutional racism. Our findings suggest several factors that warrant further investigation for understanding the relationship between caregiving and cognitive performance in Black caregivers of people living with cancer or dementia.

Assisted Relaxation Therapy for Insomnia in Older Adults With Mild Cognitive Impairment: A Pilot Study.

Insomnia symptoms are prevalent in older adults with mild cognitive impairment (MCI) and can pose treatment challenges. We tested the feasibility, acceptability, and preliminary efficacy of assisted relaxation therapy (ART) to improve insomnia symptoms in community-dwelling older adults with MCI. In this pilot RCT, 25 participants were assigned to intervention or control groups for 2 weeks. The final sample (n = 20) consisted of all Black, primarily female (70%) older adults (mean age 69.10; SD = 7.45) with mean Montreal Cognitive Assessment scores of 21.10 (SD = 2.49). Recruitment was timely; attrition was low (80%). Participants were able to use ART (average use 7.00; SD = 5.07 days). Participants in the ART group improved on Insomnia Severity Index (ISI) (- 7.10; 95% CI [-11.63, -2.55]; p = .004) compared to baseline. There were clinically meaningful mean change scores on ISI for the intervention group compared to the control (- 7.10 vs. - 4.33). Results provide justification for testing ART in a fully powered clinical trial.

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.

Adaptation of Metabolomics and Microbiomic Research Protocols During the COVID-19 Pandemic.

BACKGROUND: When the COVID-19 pandemic hit in 2020, researchers in the P30 Center for the Study of Symptom Science, Metabolomics, and Multiple Chronic Conditions at Emory University's Nell Hodgson Woodruff School of Nursing faced major challenges in recruitment and data collection because of limited access to the clinic and community facilities and the risk of COVID-19 exposure associated with in-person study contact. OBJECTIVES: The purpose of this article is to (a) describe how a cadre of pilot/supplement principal investigators adapted their studies to allow for safe and trustworthy data collection during the COVID-19 pandemic (March 2020 through date of publication) and (b) discuss steps that facilitated the technical aspects of remote data collection, especially involving biological specimens. RESULTS: Four pilot studies and two administrative supplements within the center-all at different stages of execution-adopted various alternative remote recruitment, enrollment, and data and specimen collection approaches to continue their research endeavors in a way that maximized the safety of both the research participants and the research teams. DISCUSSION: The article concludes with a discussion on the importance of a participant-centered approach when using remote methods, actions, or steps initiated to facilitate the technical aspects of remote data collection and reflections on the continued use of remote research strategies beyond the COVID-19 pandemic.

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.

Attitudes toward Alzheimer's disease and dementia caregiving and health outcomes: Racial and ethnic differences.

This study aimed to explore racial/ethnic differences in the attitudes toward Alzheimer's Disease (AD) and dementia caregiving among midlife women who were family caregivers of persons living with AD (MWPLAD) in the U.S. and examine the associations of the attitudes to their health outcomes. This was a cross-sectional online survey study among 172 MWPLAD. The instruments included: the Attitude toward AD and Related Dementias Scale, the Questions on Attitudes toward AD Caregiving, the Social Readjustment Rating Scale, the EQ-5D-5L and the Midlife Women's Symptom Index. Multiple linear regression analyses were conducted. There were significant racial/ethnic differences in caregivers' attitudes toward dementia caregiving, health-related quality of life, and total severity scores of symptoms (p < .01). Controlling for covariates including race/ethnicity, caregivers' positive attitudes toward dementia caregiving were significantly associated with their health outcomes (p ≤ .05). Interventions for MWPLAD need to consider racial/ethnical differences in their attitudes toward dementia caregiving.

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.

Predictors of change over time in subjective daytime sleepiness among older adult recipients of long-term services and supports.

OBJECTIVES: Daytime sleepiness is associated with multiple negative outcomes in older adults receiving long-term services and supports (LTSS) including reduced cognitive performance, need for greater assistance with activities of daily living and decreased social engagement. The purpose of this study was to identify predictors of change in subjective daytime sleepiness among older adults during their first 2 years of receiving LTSS. DESIGN AND SETTING: Secondary analysis of data from a prospective longitudinal study of older adults who received LTSS in their homes, assisted living communities or nursing homes interviewed at baseline and every 3 months for 24 months. PARTICIPANTS: 470 older adults (60 years and older) newly enrolled in LTSS (mean = 81, SD = 8.7; range 60-98; 71% women). MEASUREMENTS: Subjective daytime sleepiness was assessed every 3 months through 2 years using the Epworth Sleepiness Scale. Multiple validated measures were used to capture health-related quality of life characteristics of enrollees and their environment, including symptom status (Symptom Bother Scale), cognition (Mini Mental Status Exam), physical function (Basic Activities of Daily Living), physical and mental general health, quality of life (Dementia Quality of Life, D-QoL), depressive symptoms (Geriatric Depression Scale) and social support (Medical Outcomes Survey-Social Support). RESULTS: Longitudinal mixed effects modeling was used to examine the relationship between independent variables and continuous measure of daytime sleepiness. Increased feelings of belonging, subscale of the D-QoL (effect size = -0.006, 95% CI: -0.013 to -0.0001, p = 0.045) and higher number of depressive symptoms (effect size = -0.002, 95% CI: -0.004 to -0.001, p = 0.001) at baseline were associated with slower rates of increase in daytime sleepiness over time. CONCLUSIONS: Comprehensive baseline and longitudinal screening for changes in daytime sleepiness along with depression and perceived quality of life should be used to inform interventions aimed at reducing daytime sleepiness among older adults receiving LTSS.

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.

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.

Association of health related quality of life domains with daytime sleepiness among elderly recipients of long-term services and supports.

Excessive daytime sleepiness (EDS) is prevalent in older adults; however, data are lacking that examine EDS across living environments. The aims of this secondary data analysis were to identify the prevalence and predictors of EDS among older adults receiving long-term services and supports (LTSS) in assisted living communities (ALCs), nursing homes (NHs), and the community. Participants (n = 470) completed multiple measures including daytime sleepiness. Logistic regression modeling was used to identify EDS predictors. Participants were primarily female and white with a mean age of 81 ± 9 years. The overall prevalence of EDS was 19.4%; the prevalence differed across living environment. Older adults in ALCs and NHs had higher odds of EDS than those living in the community. Also, depressive symptoms and number of bothersome symptoms predicted EDS. Upon admission for LTSS, evaluating older adults, especially those in ALCs and NHs, for depression and bothersome symptoms may reveal modifiable factors of EDS.

Impact of Alzheimer disease patients' sleep disturbances on their caregivers.

Sleep disturbance symptoms are common in persons living with Alzheimer disease (AD). However little is known about the impact of sleep disturbance symptoms in patients living with AD on caregiver burden and quality of life (QOL). The aims of this study were to determine the prevalence of symptoms of disturbed sleep in patients with AD, identify the care-recipient sleep disturbance symptoms that predict caregiver burden and QoL, and determine how care-recipient sleep disturbance symptoms compare to other caregiver and patient characteristics when predicting caregiver QoL. Caregiver burden was assessed using the Screen for Caregiver Burden. Sixty percent of the care-recipients had at least one sleep symptom. In 130 caregiver/patient dyads, nocturnal awakenings, nocturnal wandering, and snoring predicted caregiver burden. Multivariate modeling demonstrated that caregiver burden, caregiver physical and mental health, and caregiver depression were predictors of overall caregiver QoL. Treating disturbed sleep in care-recipients and caregiver mental health symptoms could have important public health impact by improving the lives of the caregiving dyad.

Determinants of behavioral and psychological symptoms of dementia: A scoping review of the evidence.

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are prevalent in people with neurodegenerative diseases. PURPOSE: In this scoping review the Kales, Gitlin and Lykestos framework is used to answer the question: What high quality evidence exists for the patient, caregiver and environmental determinants of five specific BPSD: aggression, agitation, apathy, depression and psychosis? METHOD: An a priori review protocol was developed; 692 of 6013 articles retrieved in the search were deemed eligible for review. Gough's Weight of Evidence Framework and the Cochrane Collaboration's tool for assessing risk of bias were used. The findings from 56 high quality/low bias articles are summarized. DISCUSSION: Each symptom had its own set of determinants, but many were common across several symptoms: neurodegeneration, type of dementia, severity of cognitive impairments, and declining functional abilities, and to a lesser extent, caregiver burden and communication. CONCLUSION: Research and policy implications are relevant to the National Plan to Address Alzheimer's Disease.

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.

Treatment Modalities for Insomnia in Adults Aged 55 and Older: A Systematic Review of Literature from 2018 to 2023.

Purpose of Review: Insomnia is the most common sleep disorder experienced by older adults. There is a wide range of pharmacological and non-pharmacological treatment options in existing literature. The purpose of this systematic review was to synthesize randomized controlled trials of insomnia treatment modalities for adults aged 55 and older over the last 5 years. We searched four databases, and after screening, there were 34 full-text manuscripts that met the inclusion/exclusion criteria. Recent Findings: We found non-pharmacological interventions, including exercise and behavioral/psychoeducational therapies, remain effective and favorable. Complementary and alternative therapies ranged across studies and warrant further testing in larger, more diverse samples. Dual orexin receptor antagonist medications were tested in a few studies with positive benefits for sleep and minimal side effects. Finally, measures of insomnia/sleep disturbance outcomes varied among the studies, with the Pittsburgh Sleep Quality Index being used most frequently. Summary: Non-pharmacological interventions for insomnia in older adults are effective, and some newer medications may be safer, with less side effects, at managing insomnia in this population.

Evaluating the Dyadic Benefits of Early-Phase Behavioral Interventions: An Exemplar Using Data From Couples Living With Parkinson's Disease.

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

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.