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.

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.

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.

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.

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.

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.

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.

Insomnia in the Older Adult.

Although insomnia is not a normal part of the aging process, its prevalence increases with age. Factors such as medications and medical and psychiatric disorders can increase the risk for insomnia. In order to diagnose insomnia, it is important for older adults to complete comprehensive sleep and health histories. Cognitive behavioral therapy for insomnia, which includes stimulus control, sleep restriction, sleep hygiene, and cognitive therapy, is the recommended first-line treatment of insomnia and is more effective that medications for the long-term management of insomnia. Medications such as benzodiazepines and antidepressants should be avoided for the treatment of insomnia in older adults.

Cognitive Function and Sleep in Caregivers of Persons Living with Dementia.

Poor sleep is prevalent among caregivers of persons living with dementia and increases their risk for cognitive impairment and decline. In this cross-sectional, correlational study, we compared the cognitive function scores of caregivers with poor sleep with the demographically adjusted normed scores of the National Institutes of Health Toolbox Cognition Battery. Caregivers completed a 14-day sleep diary. On average, caregivers (n = 28) were 65.14 (±10.08) years, female, and White. Their average crystallized cognitive function composite score was significantly higher and their average fluid cognitive function composite score was significantly lower than the normative scores. Caregivers performed significantly worse on the processing speed domain measure. Poor sleep may affect how caregivers, including highly educated caregivers, process and respond to information, thus can influence how they safely perform complex caregiving tasks. Health care providers should consistently assess caregivers' sleep and cognitive abilities to promptly identify changes and provide timely interventions.

Recruiting Persons with Dementia and Caregivers in a Clinical Trial: Dyads Perceptions.

Recruitment for dementia research is challenging and costly. Using Ajzen's Theory of Planned Behavior we explored attitudes, perceived norms, and perceived behavioral control of persons living with dementia (PLWD) and their caregivers who participated in one clinical trial to better understand factors that influence dyads' decisions to enroll. We conducted semi-structured telephone interviews with 12 PLWD and 9 caregivers and utilized directed content analysis. Categories connected with positive attitudes about study enrollment were personal desires of wanting to learn and in-person meetings with knowledgeable staff. Additionally, participants said the money always helps in terms of the financial incentive. Participants reported enrolling to support another person (perceived norm). Study requirements were thought to be easy (perceived behavioral control). Participants highlighted the importance of flexible scheduling and study tasks being completed at their home. Findings can inform future recruitment efforts and should be investigated as effective recruitment methods in other clinical trials.

Promoting Caregiver Mastery in Black American Dementia Caregivers.

Over 6 million older Americans live with Alzheimer's disease and related dementias; Black American older adults' prevalence is more than twice that of non-Hispanic White older adults. The Black American dementia caregiving experience can be encapsulated within the Black Family Socioecological Context Model, which provides a conceptual basis for examining social determinants of health at individual, family, community, and societal levels with careful consideration for how the intersection of race, gender, and class of Black American dementia caregivers influences the multiple dimensions of their caregiving experiences. Family dynamics, community setting, and health care systems have a potentially bidirectional influence on these caregivers, which is shaped by historical and ongoing systemic and institutional racism and general disenfranchisement. This Forum article outlines how the Social Cognitive Theory offers ways for Black American dementia caregivers to achieve a sense of mastery within the complicated and fraught ecology within which their caregiving occurs. We propose a research agenda to create programs and interventions for enhancing a sense of mastery among Black American dementia caregivers. Two concepts in particular, "constraints" and "efficacy expectations," provide ways to create a systematic approach to developing successful coping strategies for the constraints perceived by individuals as they undertake and function in the caregiving role. The recognition of the complexity of the caregiving ecosystem and intersectionality of caregivers' experience and identity emphasize the importance of individualization: Each caregiver's experience of this ecosystem-and therefore each Black American dementia caregiver's way to mastery within it-will be uniquely shaped and experienced.

Results of a Randomized Trial Testing the Efficacy of Tele-Savvy, an Online Synchronous/Asynchronous Psychoeducation Program for Family Caregivers of Persons Living with Dementia.

BACKGROUND AND OBJECTIVES: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving. RESEARCH DESIGN AND METHODS: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N = 261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the 3 time points examined. The trial was slightly truncated, with Data and Safety Monitoring Board approval, because of the apparent confounding psychological effects of coronavirus disease 2019 restrictions. RESULTS: Study findings indicate statistically and clinically significant benefits to Tele-Savvy arm caregivers (with moderate to large effect sizes) in the areas of depression, perceived stress, reaction to care recipients' behaviors, and enhancement of caregiver mastery. Expected benefits for caregiver burden and anxiety were not found. DISCUSSION AND IMPLICATIONS: Findings attest to program efficacy and the viability of employing distance means to improve family caregivers' emotional well-being and sense of mastery in the caregiving role over a 6-month period. Next steps entail finding alternate ways to deliver the program to those with connectivity and/or time constraint problems.

Primary care provider evaluation and management of insomnia.

STUDY OBJECTIVES: To evaluate the type and extent of information collected from patients with insomnia during their first office encounter for insomnia and the prescribing therapies of primary care providers during this initial encounter. METHODS: This study was a retrospective chart review of randomly selected patients who had a primary care provider office visit at any clinic affiliated with a university medical system between March 1, 2013, and March 1, 2016. Demographic and clinical information was abstracted for analysis. RESULTS: Our sample (n = 200) was primarily female (63.5%), White (69%), middle-aged (ages 44.6 ± 15.1 years) adults. Most (68.5%) encounter notes did not have significant information related to insomnia risk factors and symptoms (< 50% of the notes). When examining comorbidities, we found that younger patients (<45 years old) were more likely to have anxiety linked to insomnia (P = .025), whereas older patients (≥45) were less likely to have any identified comorbidities associated with insomnia (P = .009). Only 5.0% of patients with insomnia were referred for cognitive-behavioral therapy for insomnia, whereas 51.5% of patients were prescribed sleep medications. The younger cohort was statistically more likely to receive sleep hygiene or cognitive-behavioral therapy for insomnia as a treatment option in comparison to the older cohort (P = .01 and P = .04, respectively). CONCLUSIONS: Progress notes from primary care providers tend to have a paucity of information on insomnia symptoms and related comorbidities. Medications are often prescribed as the first-line treatment for insomnia. Cognitive-behavioral therapy for insomnia remains underutilized despite robust evidence suggesting that cognitive-behavioral therapy for insomnia is a safe and effective treatment for insomnia.

The Effect of the "Great Village" on Psychological Outcomes, Burden, and Mastery in African American Caregivers of Persons Living With Dementia.

The "Great Village," a cultural adaptation of a psychoeducation intervention the "Savvy Caregiver" for African American caregivers of persons living with dementia (PLwD), aims to develop caregivers' skills and improve the quality of the lives of both the PLwD and their caregivers. The goal of this study was to determine the effectiveness of the Great Village on depressive symptoms, anxiety, burden, and mastery in African American caregivers (N = 142). A three-arm randomized control trial (Great Village, Great Village + exercise, and attention control) was conducted over a period of 6 months. Caregivers who received either Great Village or Great Village + exercise reported significant reduction in depressive symptoms and improvement in mastery. Caregivers who received only Great Village reported a reduction in anxiety. Receiving no intervention worsened caregiver burden. African American caregivers should receive culturally tailored interventions to support their health and well-being and improve their competence in caregiving.