Caregiver Depressive Symptoms Research Articles

Efficacy of the residential care transition module: A telehealth intervention for dementia family caregivers of relatives living in residential long-term care settings.

The purpose of this study was to evaluate the efficacy of the Residential Care Transition Module, a six-session, psychosocial, and psychoeducational telehealth intervention for family caregivers of cognitively impaired relatives living in a residential long-term care setting. Eligible participants (including care recipients, regardless of time since admission) were randomized to treatment or usual care control conditions. Survey data were collected at baseline, 4 months, 8 months, and 12 months (N = 240). Primary analytic outcomes included caregiver subjective stress (a stress process mechanism) and depressive symptoms (a measure of global well-being). Secondary analytic outcomes included secondary role strains, residential care stress, caregiver sense of competence, and self-efficacy (additional mechanisms of action). General linear models tested for the main effects of the intervention at 4 months, and longitudinal mixed models examined the 12-month effects of the intervention. Post hoc analyses also examined the influence of moderators. No significant differences between the treatment and control groups for any primary analytic outcome were apparent. Caregivers in the treatment group whose relatives were admitted to residential long-term care in the prior 3 months were more likely to indicate reductions in depressive symptoms over the first 4 months of participation. Over the 12-month study period, caregivers in the treatment group who were employed reported increased self-efficacy over time. The heterogeneity of dementia care requires a broader consideration of key contextual factors that may influence the efficacy of nonpharmacological interventions. Aligning measures with the preferences, goals, and values of dementia caregivers may further demonstrate the direct benefits of interventions such as the Residential Care Transition Module. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Applications of Bayesian networks in assessing the effects of family resilience on caregiver behavioral problems, depressive symptoms, and burdens

Applications of Bayesian networks in assessing the effects of family resilience on caregiver behavioral problems, depressive symptoms, and burdens

A peer mentoring program for Chinese American dementia caregivers: a pilot randomized controlled trial

Objectives A large gap exists in the development of culturally sensitive interventions to reduce stress related to dementia care among Chinese Americans, one of the fastest growing minority populations in the United States. We developed and pilot tested the feasibility and preliminary efficacy of a peer mentoring program for Chinese American dementia caregivers. Method A pilot randomized controlled trial was conducted among 38 Chinese American caregivers in New York City. Four outcome variables—caregiving competence, loneliness, caregiver burden, and depressive symptoms—were measured at baseline and 3-month and 9-month follow-ups. The study protocol and preliminary results are available at clinicltrial.gov [NCT04346745]. Results The feasibility of the intervention was high, as indicated by an acceptable retention rate, fidelity, and positive feedback from caregivers and mentors. Compared with the control group, the intervention group had greater reductions in scores for loneliness at 3-month follow-up and for caregiver burden and depressive symptoms at 9-month follow-up. We did not find significant differences in caregiving competence between the two groups. Conclusion The results indicated the high feasibility and potential efficacy of empowering existing human resources of experienced caregivers in the same ethnic community to improve the mental health of Chinese caregivers. Further research is needed to test the efficacy in a larger sample of this population.

Depressive symptoms, parenting attitude, and violent discipline among caregivers of left-behind children in rural China: a cross-sectional study

BackgroundThe situation of mental health and discipline behaviors of left-behind children’s caregivers were not optimistic in rural China. Caregivers’ depression might increase the risk of using violent discipline. However, the specific ways in which depressive symptoms impact violent discipline have rarely been explored in rural areas. This study aims to assess the prevalence of violent discipline among left-behind children under 6 years of age in rural China and explore the potential mechanisms of how caregivers’ depressive symptoms affect violent discipline.MethodsWe enrolled a total of 396 pairs of left-behind children and their caregivers in our study, which was conducted in 5 counties of Hebei, Henan, Jiangxi, Guizhou, and Sichuan provinces in China. The depressive symptoms of caregivers were measured by using Zung Self-rating Depression Scale (ZSDS) and violent discipline was assessed by the Child Discipline Module of Multiple Indicator Cluster Surveys (MICS). A self-designed questionnaire was utilized to measure caregiver’s parenting attitude. Based on the cross-sectional data, controlling for potential confounders, structural equation modeling (SEM) was used to assess the direct and indirect effects of the mediation models by applying the weighted least squares with mean and variance adjusted (WLSMV) estimate.ResultsThe prevalence of violent discipline, psychological aggression, and physical punishment was 72.7%, 59.3%, and 60.4% respectively of left-behind children under 6 years of age. According to the results of SEM, parenting attitude acted as a suppressor, suppressing the association between caregivers’ depressive symptoms and physical punishment/psychological aggression/violent discipline. The caregivers’ depressive symptoms positively influenced all the outcome variables by affecting parenting attitudes (p = 0.002, p = 0.013, p = 0.002).ConclusionsThe presence of depressive symptoms in caregivers increases the use of violent discipline through negative parenting attitudes. The mental health status of primary caregivers of left-behind children in rural China needed emphasis and improvement.

Experıences of loss and theır management by ınformal caregıvers ın the communıty. Perceıved Qualıty of Lıfe of people wıth chronıc dıseases

Background: Informal caregivers play a vital role in caring for patients with chronic illnesses, but this care can significantly affect their mental health and well-being, particularly after the loss of the patient. Due to the significance of the issue and limited research in the field, it is important to identify factors associated with the mental health of informal caregivers. Method and Material: This study aimed to investigate the experiences of loss and their management by informal caregivers of people with chronic diseases. Specifically, it evaluated the relationship between experiences of loss and (1) mental health and (2) socio-demographic characteristics of informal caregivers. A quantitative survey was conducted on a sample of 98 informal caregivers of patients with chronic diseases, using the Core Bereavement scales BEQ-24 and DASS-21. Results: The data analysis revealed that 25.5% of informal caregivers were prepared to experience loss, while only 12.2% sought psychological support to manage their experiences. Informal caregivers often experienced loss with sadness, loneliness, and nostalgia while recalling memories with the deceased patient. Fewer caregivers experienced guilt, self-blame, and anger or sought to fulfill their emotional and existential needs. The study also found that experiences of loss were associated with symptoms of depression, anxiety, and stress in informal caregivers of people with chronic diseases. Conclusions: The study underscores the impact of caring for patients with chronic illnesses on mental health and wellbeing of informal caregivers, particularly after the loss of the patient. The results highlight the need for interventions to support informal caregivers.

Caregiver Distress and Child Behavior Problems in Children with Developmental Delay from Predominantly Minoritized Backgrounds

ABSTRACT Importance Child behavior problems have been shown to contribute to caregiver distress and vice versa among youth with developmental delay (DD). However, studies have not examined these associations among children and caregivers from underrepresented ethnic/racial backgrounds. Furthermore, research has not explored how associations function differently following internet-delivered treatment or based on the level of acculturation and enculturation. Objective We examined bidirectional associations between caregiver distress (i.e. symptoms of depression, anxiety, and stress) and externalizing and internalizing behavior problems in 3- to 5-year-old children with DD from underrepresented ethnic/racial backgrounds. We also examined the impact of internet-delivered Parent–Child Interaction Therapy (iPCIT) and the moderating role of acculturation and enculturation on these bidirectional associations. Method Children aging out of early intervention services (n = 150) and their primary caregiver were randomized to receive iPCIT or referrals as usual (RAU) in the community. Results Findings provide support for bidirectional associations between child internalizing behavior problems and caregiver depressive symptoms, although there were fewer significant associations among families randomized to iPCIT compared to RAU. Weaker associations were observed among families with higher levels of enculturation, whereas stronger associations were observed among families with higher levels of acculturation. Conclusions Results highlight a sensitive period from age 3.5 to 4 years old for bidirectional associations between caregiver distress and child behavior problems and highlight the importance of addressing family cultural values during treatment. Findings also suggest the utility of internet-delivered behavioral parenting interventions in weakening the effect of child behavior problems on caregiver distress and vice versa.

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time.

Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver's physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver's absence on the primary caregiver's well-being is understudied. Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient's wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.

Longitudinal effects of ambivalent and guilt feelings on dementia family caregivers' depressive symptoms.

The world prevalence of people with dementia is increasing. Most of the care received by people with dementia is provided by family caregivers, and this prolonged activity has a significant impact on caregivers' levels of depression. Stressors and frequency of leisure are known predictors of caregivers' depressive levels. The longitudinal impact of caregivers' ambivalent and guilt feelings is unknown. Participants were 177 family caregivers of relatives with dementia who were assessed three times during a 2-year period. In addition to demographic variables, psychological symptoms of the dementias, and frequency of leisure activities, caregivers' ambivalent feelings, guilt, and depressive symptoms were measured. The longitudinal association of changes in these variables with changes in caregivers' depressive symptoms over time was assessed using mixed linear models. Changes over time in the assessed variables predicted 48.05% of variance of changes over time in depressive symptoms. Even when variables strongly associated with increased depressive symptoms were controlled (lower caregivers' age and educational level, higher reaction to BPSD, and lower leisure activities), increases in ambivalence and guilt contributed to an increase of 9.22% of the variance of changes depressive symptoms over a 2-year period. The effects of ambivalent feelings on depression are indirect, mediated by guilt feelings. Cessation of caregiving do not seem to alter these findings. Caregivers' ambivalent and guilt feelings are significant predictors of caregivers' mental health. Caregivers may significantly benefit from early detection of ambivalent and guilt feelings and preventive strategies targeting triggers associated with ambivalent and guilt symptoms.

Contribution of caregiver and child anxiety and depressive symptoms to child asthma-related quality of life

BackgroundDepression and anxiety negatively affect asthma-related quality of life (QoL). Yet, little is known regarding mood and asthma-related factors that best uniquely explain asthma-related QoL in children. ObjectiveThis cross-sectional study evaluated the unique variance explained by caregiver and child depressive and anxiety symptom severity in child asthma-related QoL, apart from that explained by demographics and asthma control. MethodsChildren aged 7 to 17 years with asthma (n = 205) and their caregivers with major depressive disorder were included. A 3-stage hierarchical linear regression analysis was conducted with the Pediatric Asthma Quality of Life Questionnaire total scores considered as the outcome. Predictors included demographic characteristics (stage 1); asthma control assessed by the Asthma Control Test (stage 2); and caregiver depression and anxiety (Hamilton Rating Scale for Depression and the Spielberger State/Trait Anxiety Scale) and child depression and anxiety (Children's Depression Inventory and the Screen for Child Anxiety-Related Disorders) (stage 3). ResultsDemographic characteristics accounted for only 5.5% of the Pediatric Asthma Quality of Life Questionnaire scores. Asthma control significantly increased variance explained in QoL to 32.6%, whereas caregiver and child depression and anxiety symptoms significantly increased variance explained to 42.6%. Child anxiety was found to uniquely explain the largest proportion of variance in QoL (rs2 = 0.584). ConclusionAfter adjusting variance in QoL for demographic characteristics and asthma control, caregiver and child depression and anxiety measures significantly increased the proportion of variance explained in a child's asthma-related QoL. In addition to better asthma control, child and caregiver depression and anxiety should be addressed to increase child asthma-related QoL. Trial RegistrationClinicalTrials.gov Identifier: NCT02809677.

Informal Caregiver Social Network Types and Mental Health: The Mediating Role of Psychological Resilience

ABSTRACT Little is known about whether and why social networks protect mental health among informal caregivers. This study examined the association between informal caregiver social network types and depressive symptoms and the mediatory mechanism of psychological resilience. Latent class analysis, applied to cross-sectional data on 278 Singaporean caregivers, identified four social network types: restricted (42%), friend (16%), family (21%), and diverse (21%). Path analysis showed that the diverse social network type, compared to the restricted social network type, was associated with a lower level of depressive symptoms, and psychological resilience fully mediated this association. Interventions should help caregivers to maintain social networks with their family and friends.

Relationship Between Acculturation and Mental Health in Korean American Family Caregivers of Community-Dwelling Persons Living with Dementia.

Despite the growing number of Korean American (KA) family caregivers for persons with dementia, little is known about how acculturation might affect caregiving stress in this population. Acculturation is a variable of considerable interest in caregiving research due to its significance in understanding the impact of cultural perceptions and expectations on the caregiving role and its relation to mental health outcomes. A cross-sectional descriptive study using baseline data from an ongoing randomized controlled trial of dementia caregiver intervention was performed to examine the association between acculturation and mental health outcomes among KA caregivers (n = 32) for persons with dementia. Self-report survey questionnaires including a bidirectional acculturation scale, Center for Epidemiologic Studies Depression Scale, the Perceived Stress Scale, and the Zarit Burden Interview were administered in person in English or Korean by trained bilingual community health workers. The primary independent variable, acculturation, was assessed using a 24-item inventory. It measured two sets of cultural orientation: Korean orientation and American orientation. The mean age was 67 years (SD = 11.8) and 87% were women. Half of the caregivers were spouses of persons with dementia, while the other half were offspring caregivers. In the multiple linear regression model, caregiver acculturation toward Korean cultural orientation had a significant and positive association with depressive symptoms (β = .62; SE = 0.25; p-value = .02) and perceived stress (β = .29; SE = 0.13; p-value = .03) after adjusting for age and self-efficacy. No significant effect of American cultural orientation was found for caregiver burden, perceived stress, or depressive symptoms. Our findings suggest that exploring the role of acculturation in caregiving and its relation to outcomes, particularly caregiver distress, may be valuable for future studies aiming to understand specific elements of cultural values and practices in the acculturation process related to mental health outcomes among immigrant Korean American caregivers.

Caregiver burden and impact on COVID-19 patient participation and quality of life one year after ICU discharge – A prospective cohort study

Objectivesto investigate changes in caregiver strain, mental health complaints and QoL in caregivers of COVID-19 ICU survivors in the first year after discharge, and their associations with patients’ participation and quality of life. MethodsPost-ICU COVID-19 survivors, needing inpatient rehabilitation and their informal caregivers were included. Caregiver self-administered questionnaires included quality of life, self-rated health, caregiver strain, anxiety and depression symptoms, post-traumatic stress and coping style. Patients’ participation in society was assessed and quality of life. Results67 patients (78% male) and 57 caregivers (23.6% male) were included. Three months post-ICU, caregivers experienced caregiver strain (32%), anxiety (41%), depressive symptoms (16%) and PTSD (24%). One year post-ICU, rates decreased, still being 11%, 26%, 10% and 5%, respectively. Caregiver anxiety symptoms and self-rated health at three months were associated with worse patient levels of participation and quality of life one year after ICU discharge (p < 0.05). ConclusionsCOVID-19 caregivers experience high levels of mental health complaints one year after a patient’s ICU discharge. Furthermore, our results indicate that patient participation levels and quality of life one year after ICU discharge may be negatively associated by caregiver complaints. Practical implicationsCounselling and routine assessment of emotional complaints and unmet needs of the informal caregiver should be incorporated and addressed in the rehabilitation treatment of (COVID-19) post-ICU patients.

Preschoolers' Self-Regulation and Behavior Problems in the Midst of Caregiver Depression and Chaos.

Preschoolers' self-regulation is partially developed through home and child care routines. COVID-19-related child care closures increased caregiver depressive symptoms, household chaos, and children's behavior problems. This longitudinal study examined how preschoolers' prepandemic self-regulation was related to behavior problems early in the pandemic, including buffering against the adverse effects of caregiver depressive symptoms and household chaos. A sample of 264 caregivers of preschoolers reported on their children's self-regulation (Behavior Rating Inventory of Executive Function-Preschool Version Inhibitory Self Control Index) before the pandemic and caregiver depressive symptoms (Center for Epidemiological Studies), household chaos (Confusion, Hubbub, and Order Scale), and children's behavior problems (Behavior Rating Index for Children) during the pandemic. We used linear mixed models to examine predictors of children's behavior problems, including prepandemic self-regulation, and further examined moderation by pandemic-related caregiver depressive symptoms and household chaos. Children were 64% non-Hispanic White and 24% non-Hispanic Black, with mean pandemic age 5.9 years. Prepandemic self-regulation significantly predicted early pandemic behavior problems (β = -0.38 [95% confidence interval, -0.69 to -0.07]). This association was moderated by pandemic-related caregiver depressive symptoms and household chaos; the protective association was maintained at high levels of caregiver depressive symptoms or household chaos, although the association diminished when these co-occurred. The protective association between prepandemic self-regulation and subsequent behavior problems suggests longitudinal benefits of preschoolers' inhibitory and emotional control. Despite reduced protection associated with co-occurring caregiver and household challenges, self-regulation continued to demonstrate protection against subsequent behavior problems, even in the midst of a pandemic.

Early Correlates of School Readiness Before and During the COVID-19 Pandemic Linking Health and School Data

Many known correlates of kindergarten readiness are captured in developmental and social screenings in primary care; little is known about how primary care data predicts school readiness. To identify early Kindergarten Readiness Assessment (KRA) correlates by linking electronic health record (EHR) data with school district KRA data and to examine potential outcomes of the COVID-19 pandemic using KRA scores between 2018 and 2021. This was a retrospective cohort study linking a large primary care practice (PCP) with school assessment data. Linkage used patient name, date of birth, and address. The setting was an urban school district and PCP affiliated with an academic medical center. Students had a KRA score from fall of 2018, 2019, or 2021 (no 2020 KRA due to the COVID-19 pandemic) and at least 1 prior well-child visit at the PCP. Exposures included year KRA administered, reported child race and ethnicity, child sex, interpreter for medical visits, child ever failed Ages & Stages Questionnaire (ASQ) 18 to 54 months, ever rarely read to, Medicaid status, food insecurity, housing insecurity, problems with benefits, and caregiver depressive symptoms. KRA score (continuous), with a possible range of 0 to 300 (passing score = 270). A total of 3204 PCP patients (mean [SD] age, 67 [4] months; 1612 male [50.3%]; 2642 Black [82.5%]; 94 Hispanic [2.9%]; 244 White [7.6%]) were matched to their KRA score. Mean (SD) KRA scores were significantly lower in 2021 (mean [SD], 260.0 [13.0]; 214 of 998 [21.4%]) compared with 2019 (mean [SD], 262.7 [13.5]; 317 of 1114 [28.5%]) and 2018 (mean [SD], 263.5 [13.6]; 351 of 1092 [32.1%]), a pattern mirrored in the larger school district. In the linear regression final model (n = 2883), the following binary variables significantly lowered the child's KRA score (points lowered [95% CI]) below a mean passing score of 270.8: child ever failed ASQ after 18 months (-6.7; 95% CI, -7.7 to -5.6), Medicaid insured (-5.7; 95% CI, -9.0 to -2.3), Hispanic ethnicity (-3.8; 95% CI, -6.9 to -0.6), requires interpreter (-3.6; 95% CI, -7.1 to -0.1), 2021 year (-3.5; 95% CI, -4.7 to -2.3), male sex (-2.7; 95% CI, -3.7 to -1.8), ever rarely read to (-1.5; 95% CI, -2.6 to -0.4), and food insecurity (-1.2; 95% CI, -2.4 to -0.1). Race, caregiver depression, housing insecurity, and problems receiving benefits were not associated with KRA scores in final model. Findings of this cohort study suggest a deleterious association of the COVID-19 pandemic with early learning and development. There may be potential for PCPs and school districts to collaborate to identify and mitigate risks much earlier.

Cascading Influences of Caregiver Experiences of Discrimination and Adolescent Antisocial Behavior

ABSTRACT Objective Although a growing body of work has found that parents’ experiences of racial and socioeconomic (SES) based discrimination are directly related to their children’s behavior problems , more work is needed to understand possible pathways by which these factors are related and to identify potential targets for prevention and/or intervention. Method Using a large (N = 572), longitudinal sample of low-income families from diverse racial backgrounds, the current study explored whether caregivers’ experiences of racial and SES discrimination during their children’s middle childhood (i.e. ages 7.5–9.5) predicted youth-reported antisocial behavior during adolescence and potential factors mediating these associations (e.g. caregiver depressive symptoms and positive parenting practices). Results We found that higher levels of caregiver experiences of discrimination at child ages 7.5–9.5 predicted higher levels of caregiver depressive symptoms at child age 10.5, which were related to lower levels of caregiver endorsement of positive parenting practices at child age 14.5, which in turn, predicted higher levels of youth-reported antisocial behavior at age 16. Conclusion The findings highlight the adverse effects of racism and discrimination in American society. Second, the findings underscore the need to develop interventions which mitigate racism and discrimination among perpetrators and alleviate depressive symptoms among caregivers.

Collateral effects of Coping Power on caregiver symptoms of depression and long-term changes in child behavior.

A large body of research demonstrates positive impacts of the Coping Power Program as a preventive intervention for youth behavioral outcomes, but potential collateral effects for caregivers is less known. The current study examined whether the youth-focused Coping Power Program can have a secondary impact on caregiver self-reported symptoms of depression and in turn result in longer-term impacts on child disruptive behavior problems including aggression, conduct problems and hyperactivity. Data from 360 youth/caregiver pairs across 8 waves of data (grades 4 through 10) were analyzed. We used two methodological approaches to (a) assess indirect effects in the presence of potential bidirectionality using timepoint-to-timepoint dynamic effects under Autoregressive Latent Trajectory modeling and (b) estimate scale scores in the presence of measurement non-invariance. Results showed that individually delivered Coping Power (ICP) produced greater direct effects on conduct problems and indirect effects on general externalizing and hyperactivity (through reductions in caregiver self-reported symptoms of depression), compared to group Coping Power (GCP). In comparison to GCP, ICP produced similar direct effects on reductions in caregiver depression. Child-focused prevention interventions can have an indirect impact on caregiver depression, which later shows improvements in longer-term reductions for child disruptive problems.

Depression, Stress, Anxiety, and Family Burden in Caregivers of Patients with Preexisting Severe Mental Illness and Their Coping Strategies during Omicron Wave of COVID-19 Pandemic

Background and Aims: There is limited research on the impact of COVID-19 pandemic on caregivers of patients with severe mental illness (SMI) during its late phase when sufficient and widespread knowledge about management and preventive aspects existed. We aimed to assess the impact of COVID-19 pandemic on caregivers of patients with SMI during Omicron wave. Methodology: We assessed 100 caregivers of patients with preexisting SMI diagnosed on the Diagnostic and Statistical Manual of Mental Disorders-5, 50 each of schizophrenia and related psychotic disorders (SCZ) and bipolar disorder (BD) from December 14, 2021, to February 9, 2022. We assessed symptoms of depression, anxiety, stress, and family burden in caregivers and their coping strategies by the Depression, Anxiety, and Stress Scale-21 Hindi version, Family Burden Interview Schedule (FBIS), and Brief-Coping Orientation to Problem Experienced, respectively. Results: Caregivers of SMI experienced symptoms of depression (51%), anxiety (72%), and stress (13%), with significantly more symptoms of depression (P = 0.002) and anxiety (P = 0.025) in caregivers of SCZ. High caregiver burden (score: 25.76, &gt; half of the total score on FBIS) was found with no significant difference in the two groups. Caregivers of SCZ used a greater number of emotion-focused coping strategies, whereas those with BD used more problem-focused coping, but the difference was not significant. A significant association was seen between coping strategies of substance use and depressed symptoms (P = 0.003), substance use and anxiety symptoms (P = 0.007); anxiety symptoms with denial (P = 0.001) anxiety symptoms and venting (P = 0.008) in caregivers of BD. Conclusion: Caregivers of patients with preexisting SMI experienced depression, anxiety, and high family burden during Omicron wave. They used both emotion- and problem-focused coping strategies.

UNVEILING THE COMPLEX REALITIES: UNDERSTANDING SLEEP AND FATIGUE CHARACTERISTICS OF END-OF-LIFE CAREGIVERS

Abstract This mixed methods multi-case study explores sleep and fatigue characteristics among end-of-life caregivers. The research sample encompasses cases aiding individuals with advanced (n=4) and chronic illnesses (n=1), including various caregiver demographics such as gender, age groups (19-64 and 65+), and health conditions. Data collection involves comprehensive surveys capturing demographics, care recipient symptom intensity, caregiver depressive symptoms, caregiving stress, caregiver sleep quality, and caregiver fatigue level. The study integrates data from a 30-day Personal Sleep Monitoring Device (PSMD) and a 14-day sleep journal, enriched by insights from semi-structured interviews and field notes. The outcomes indicate a PSQI (Pittsburgh Sleep Quality Index) score of 6.1, accompanied by 7.44 hours of sleep recorded by the PSMD. There were approximately 20.5 nocturnal awakenings within 30 days, with average fatigue at 55.28 and daily fatigue at 49.66. Objective sleep outcomes were consistent among caregivers, while their own sleep ratings ranged from “Fairly Bad” to “Very Good.” Themes for each case were formulated to delve into the context of these sleep and fatigue characteristics. These themes encompass adaptive leadership, linchpin roles, emotional labor management, self-reliance, and vigilance. A prevailing overarching theme is the perception of “Not having control.” A significant finding underscores the dynamic influence of care recipients’ daily statuses on caregivers’ sleep quality and fatigue levels, leading to unpredictable outcomes. This study offers profound insights into end-of-life caregivers’ intricate journeys, highlighting individual differences and the dynamic nature of caregiving roles, while recognizing the importance of tailored interventions for enhancing caregiver’s well-being and caregiving effectiveness.

Factors associated with reduced sleep among spouses and caregivers of older adults with varying levels of cognitive decline.

Caregivers of persons with cognitive decline (PWCD) are at increased risk of poor sleep quantity and quality. It is unclear whether this is due to factors in the caregiver versus in the PWCD. This secondary data analysis using Aging, Demographics, and Memory Study data from the Health Retirement Study examined factors contributing to reduced sleep/rest among spouses and caregivers of older adults with varying levels of cognitive decline (cognitively normal (CN), cognitive impairment but not dementia (CIND), or dementia). In our preliminary analysis, among N = 218 spouses (not necessarily caregivers) (mean age (SD) = 73.77 (7.30); 70.64% female) of older adults with varying levels of cognitive decline, regression revealed that frequency of sleep complaints was lowest among spouses with CN partners, second highest with CIND partners, and highest with dementia-partners, X2 = 26.810, P = 0.002. among n = 136 caregivers of PWCD (mean age (SD) = 59.27 (13.97); 74.26% female; 22.79% spouses), we analyzed whether caregiver reduced sleep/rest was predicted by PWCD factors (i.e., frequent nighttime waking, dementia severity) and/or caregiver factors (i.e., depression symptoms, caregiver role overload). Regression revealed that caregiver depression symptoms (d = 0.62) and role overload (d = 0.88), but not PWCD factors, were associated with reduced caregiver sleep/rest after adjusting for demographic factors, caregiving frequency, and shared-dwelling status (overall model: X2 = 31.876, P = 0.002). Exploratory analyses revealed that a caregiver was 7.901 times more likely (95% CI: 0.99-63.15) to endorse experiencing reduced sleep/rest if back-up care was not available (P = 0.023). Findings highlight that the frequency of reported sleep problems among spouses increases in a stepwise fashion when partners have dementia versus CIND versus CN. The results also emphasise that caregiver mental health and burden are strongly associated with caregiver sleep disturbances and thus may be targets of intervention for caregiver sleep problems.

Assessing the psychological impact of COVID‐19 on rural informal caregivers of persons living with dementia in the United States

AbstractBackgroundInformal caregivers of persons living with dementia (PLWD) in rural areas of the United States (U.S.) are a vulnerable population. During the COVID‐19 pandemic, rural communities experienced heightened disparities in social services, healthcare[1], and mortality[2], including suicides[3,4]. Yet, how the pandemic affected rural caregivers is largely unknown. We examined predictors of depression and stress, as well as self‐perceived impact of COVID‐19, among rural caregivers of PLWD.MethodAs part of the Rural Dementia Caregiver Project[5], U.S. rural informal caregivers of PLWD completed an online survey from March 1, 2021, through April 30, 2022. We conducted a mixed‐method analysis of responses to validated scales and an open‐ended question. Caregiver outcome measures include depressive symptoms[6] and stress[7]. Predictors include caregiver COVID‐19 limitations[8], loneliness[9], social isolation[10], and burden[11]. Linear regression analyses examined independent associations of predictors with outcomes, adjusting for age, sex, and caregiving hours spent per week. We completed thematic analysis of responses to the question, “How has COVID impacted your life as a caregiver?” to contextualize quantitative findings.ResultA total of 152 rural caregivers completed the survey, and of those 127 responded the open‐ended question. Most (81%) caregivers were aged 50 years and older, and 82% were female. Factors positively associated with caregiver depressive symptoms were loneliness (β = 0.72, p&lt;0.0001) and burden (β = 3.18, p&lt;0.01). Factors positively associated with caregiver stress were loneliness (β = 0.22, p&lt;0.05) and burden (β = 1.28, p&lt;0.05). COVID‐19 limitations and social isolation were not associated with depressive symptoms or stress. Qualitative results confirmed quantitative results (e.g., loneliness, increased burden) and revealed other aspects of the psychosocial context of pandemic caregivers including both negative (e.g., worry, decline in care partner health) and positive (e.g., increased time with care partner) factors (Table 1).ConclusionWe found that loneliness and care burden contributed to the psychological distress of rural caregivers of PLWD during the COVID‐19 pandemic, and identified other contextual factors of their experiences. The pandemic exacerbated existing vulnerabilities and exposed new ones. Rural caregivers should receive increased support to address the psychosocial stressors and burdens endured during the current pandemic and future catastrophic events.