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Background: Caregivers of pediatric cancer patients often face significant stress and emotional strain, which can negatively impact their well-being and the quality of care provided to their children. Understanding the socio-demographic factors influencing caregiver stress and identifying the specific needs and resources required by caregivers are crucial for improving support systems in pediatric cancer care. Aim of the study: This study aimed to analyze the levels of caregiver stress and their resource needs within pediatric cancer care. Methods: A cross-sectional descriptive design was used, and the study was conducted at El-Minia Oncology Center outpatient clinics, Egypt. The sample included 258 pediatric cancer caregivers selected based on predefined eligibility criteria. Data were collected using the Caregiver Needs and Resources Assessment (CNRA) and the King Stone Caregiver Stress Scale (KCSS), both of which demonstrated strong reliability and validity. Descriptive statistics, t-tests, ANOVA, and Pearson correlation coefficients were employed for data analysis using SPSS version 29, with a significance level set at p < 0.05. Results: Caregivers reported moderate to high stress levels, with an average stress score of 34.59 (SD = 7.649). Age, education level, marital status, and income were significant predictors of caregiver stress (p < 0.001), with lower income and higher educational levels contributing to increased stress. The number of children, child’s age, and duration since cancer diagnosis also significantly impacted stress levels (p < 0.001). Correlation analysis revealed that psychological needs were positively related to stress (r = 0.488, p < 0.001), while spirituality was negatively associated with stress (r = -0.241, p < 0.001). Regression analysis indicated that physiological needs (ß = 0.331) and role conflict (ß = 0.294) were the strongest predictors of stress (R² = 0.636). Conclusion and implications: This study emphasizes the impact of socio-demographic factors on caregiver stress in pediatric cancer care. Targeted interventions that address caregivers’ psychological, social, and financial needs are essential to alleviate stress. Implementing caregiver-centered support programs in pediatric oncology can enhance the well-being of both caregivers and patients. Future research should explore sustainable strategies to further reduce caregiver burden. Clinical trial number: Not applicable. [ABSTRACT FROM AUTHOR]

Introduction: Family members caring for a person living with dementia (PWD) can experience caregiver burden, leading to psychological distress if unmanaged. It's essential for healthcare professionals, especially nurses to identify caregivers at risk of stress and depression, triggering prompt management during their contact with caregivers of PWD. The study team developed an evidence-based caregiver burden-mastery hybrid assessment and intervention decision matrix (CHAT-MI) for caregivers of PWD and examined its feasibility of use. Objective: To determine the feasibility and usability of implementing the CHAT-MI assessment-decision matrix tool in an outpatient setting in Singapore. Methods: CHAT-MI was developed through earlier research, research evidence, clinical guidelines, and expert opinion. A multimethod study was conducted in a Singapore outpatient memory clinic from November 2020 to January 2021. Caregivers of PWD who attended the clinic self-administered the assessment tool to determine their burden and personal mastery levels. Clinicians used a decision matrix to guide interventions based on the assessments. Feedback was gathered from both caregivers and clinicians through surveys and semistructured interviews. Results: Thirty-four caregivers and six clinicians participated in the study. Caregivers found the burden-mastery assessment tool relatively easy to use and understand and helpful. Clinicians found the assessment-decision matrix tool acceptable, feasible, and useful, enhancing standard care by providing insights into caregivers' current coping capabilities. Clinicians shared that junior clinicians could benefit from CHAT-MI to better detect caregiving stress and deliver interventions. Nevertheless, more can be done to train clinicians in the understanding of the concept of mastery (i.e., perceived control over life events) to help clinicians better engage and support caregivers. Conclusion: CHAT-MI was found to be relatively brief and can aid the outpatient clinic setting. This suggests that such an evidence-based assessment cum intervention can be considered for use in a real-world clinical setting to aid both caregivers and clinicians. [ABSTRACT FROM AUTHOR]

China's fertility policy and population aging have produced many "4-2-2"–structured sandwich families, placing the sandwich generation under dual caregiving stress. Through reflective lifeworld research and multilevel interviews with 14 "4-2-2" families, we confirmed that the essence of "dual stress" was the competing responsibilities of caring for older adults and children. This essence can be further illustrated by the vulnerability of the cared-for, lack of emotional resources, socio-educational anxiety, and family livelihood pressure. In addition, the dual stress can jeopardize the well-being of the sandwich generation as family caregivers. However, this dilemma can be alleviated by intergenerational support-balancing, alternative digital-technology, and complementary social-care strategies. Understanding the lifeworld of sandwich families presents practical approaches and policy implications for caregiving-support systems. [ABSTRACT FROM AUTHOR]

Caregiving for children with autism spectrum disorder (ASD) poses significant stress for parents, necessitating an exploration of mitigating factors. This study investigates the interplay between Family Sense of Coherence, Psychological Capital and caregiver stress in this context. A total of 205 caregivers of children with ASD participated in this cross‐sectional study. Data were collected on Family Sense of coherence, Psychological Capital (encompassing hope, resilience, optimism and self‐efficacy) and caregiver stress. Structural equation modelling was employed to test the mediation effect of psychological capital between family sense of coherence and caregiver stress. The results indicated a strong positive correlation between family sense of coherence and all subdomains of psychological capital, with coefficients ranging from 0.541 to 0.610. Conversely, psychological capital demonstrated significant negative correlations with various domains of the Kingstone Caregiver Stress Scale, including caregiving, family issues and financial issues (coefficients from −0.443 to −0.427). Furthermore, family sense of coherence showed a direct negative effect on stress (β = −0.384, p < 0.001). Notably, the study revealed a significant mediating role of psychological capital in the relationship between family sense of coherence and caregiver stress, with an indirect effect of family sense of coherence on stress through psychological capital (β = −0.127). The findings underscore the crucial role of family sense of coherence and psychological capital in enhancing psychological resources and mitigating stress among caregivers of children with ASD. These results suggest that interventions aimed at strengthening family coherence and building psychological capital could be effective strategies in alleviating stress among caregivers of children with ASD. Healthcare professionals should consider incorporating family coherence approaches and psychological capital techniques in their support programs for these caregivers. [ABSTRACT FROM AUTHOR]

Objective: Carers for people with dementia commonly experience difficulty assisting the care‐recipients with their daily activities and may adopt specific strategies to decrease the difficulties experienced. The objective of this qualitative study was to explore and understand the strategies used by carers to assist with daily activities for persons living with dementia. Methods: Individual semi‐structured interviews via face‐to‐face or telephone mode were conducted with 62 carers of persons living with dementia in Australia. Carers were asked about the strategies they have used previously, or are currently using, to assist with daily activity completion. Data were analysed via constant comparison and thematic analysis. Results: All carers reported the need for strategies to accommodate the varying behaviour and functioning of the care‐recipients. Participants reported a total of 207 strategies that fell into four main categories: (i) engage; (ii) adapt; (iii) orientate; and (iv) sense. The most used strategies were reported as those aimed at adapting the activity by using equipment to facilitate completion. Conclusions: Carers help persons living with dementia complete their daily activities by developing their own strategies based on the care‐recipients' needs and personal preferences through a trial‐and‐error process. Carers can benefit if more advice is provided to them by health/social care professionals regarding what strategies may be helpful. Further studies are needed to develop these strategies into an educational package so that carers can be guided to use these strategies appropriately. [ABSTRACT FROM AUTHOR]

Abstract Background Individuals with Sickle Cell Disease (SCD) are a minoritized and marginalized community that have disparate health outcomes as a result of systemic racism and disease-related stigma. The purpose of this study was to determine the psychosocial risk factors for families caring for children with SCD at a pediatric SCD center through use of the Psychosocial Assessment Tool (PAT), a validated caregiver-report screener. Methods The PAT was administered annually during routine clinical visits and scored by the SCD Social Worker to provide tailored resources to families. The PAT stratifies scores into 3 categories of psychosocial concern: Universal, Targeted, Clinical. PATs administered between September 2021-December 2022 were analyzed. Results Two hundred twenty-five PATs were included for analysis. Most caregivers identified as Black, single Women over 21 years old with a high school degree or more. The average patient age was 8.2 years (0–22 years). Sixty-seven percent of PATs fell into the Universal category. Dyads that scored in the Targeted or Clinical categories were more likely to report financial hardship, caregiver mental health concerns, and family stressors (p

Abstract Background Caregiver stress can pose serious health and psychological concerns, highlighting the importance of timely interventions for family caregivers of people with dementia. Single-session mindfulness-based interventions could be a promising yet under-researched approach to enhancing their mental well-being within their unpredictable, time-constrained contexts. This trial will evaluate the effectiveness and feasibility of a blended mindfulness-based intervention consisting of a single session and app-based follow-up in reducing caregiver stress. Methods/Design The study is a single-blinded randomized controlled trial with two arms (intervention versus an education session on dementia care) and assessments at baseline, 8 weeks, and 6 months. The eligibility criteria include: family caregivers aged 18 years or older; providing care for an individual with a confirmed medical diagnosis of dementia for at least 3 months prior to recruitment, with a minimum of 4 hours of daily contact; and exhibiting a high level of caregiver stress. The intervention comprises a 90-minute group-based session with various mindfulness practices and psychoeducation. Participants will receive a self-practice toolkit to guide their practice over a duration of 8 weeks. Sharing activities will be implemented through an online social media platform. The primary outcome is perceived caregiving stress. The secondary outcomes include depressive symptoms, positive aspects of caregiving, dyadic relationship, trait mindfulness, and neuropsychiatric symptoms of care recipients. The feasibility outcomes include eligibility and enrollment, attendance, adherence to self-practice, and retention, assessed using mixed methods. Discussion The study will contribute to the evidence base by investigating whether a single-session mindfulness intervention is effective and feasible for reducing caregiver stress among family caregivers of people with dementia. Trial registration ClinicalTrials.gov, NCT06346223. Registered on April 3, 2024.

Background: Caregiver stress can pose serious health and psychological concerns, highlighting the importance of timely interventions for family caregivers of people with dementia. Single-session mindfulness-based interventions could be a promising yet under-researched approach to enhancing their mental well-being within their unpredictable, time-constrained contexts. This trial will evaluate the effectiveness and feasibility of a blended mindfulness-based intervention consisting of a single session and app-based follow-up in reducing caregiver stress. Methods/Design: The study is a single-blinded randomized controlled trial with two arms (intervention versus an education session on dementia care) and assessments at baseline, 8 weeks, and 6 months. The eligibility criteria include: family caregivers aged 18 years or older; providing care for an individual with a confirmed medical diagnosis of dementia for at least 3 months prior to recruitment, with a minimum of 4 hours of daily contact; and exhibiting a high level of caregiver stress. The intervention comprises a 90-minute group-based session with various mindfulness practices and psychoeducation. Participants will receive a self-practice toolkit to guide their practice over a duration of 8 weeks. Sharing activities will be implemented through an online social media platform. The primary outcome is perceived caregiving stress. The secondary outcomes include depressive symptoms, positive aspects of caregiving, dyadic relationship, trait mindfulness, and neuropsychiatric symptoms of care recipients. The feasibility outcomes include eligibility and enrollment, attendance, adherence to self-practice, and retention, assessed using mixed methods. Discussion: The study will contribute to the evidence base by investigating whether a single-session mindfulness intervention is effective and feasible for reducing caregiver stress among family caregivers of people with dementia. Trial registration: ClinicalTrials.gov, NCT06346223. Registered on April 3, 2024. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to determine the impact of socio-demographic and health characteristics, caregiving stress, life satisfaction, and quality of life on the caregiving burden in caregivers of Alzheimer’s patient. Methods: This study is a descriptive-correlational type study. A total of 146 individuals who are caregivers of Alzheimer’s patient constitute the sampling of the study. The Zarit Burden Interview, Caregiver Strain Index, Satisfaction with Life Scale, and SF-36 Quality of Life. Results: The care burden mean score of caregivers was 61.29±10.3. It was determined that age (β=0.648), caring duration (β=0.429), gender(β=0.672), marital status(β=0.936), educational status(β=0.863), the affinity of the caregiver with the patient(β=0.734), working status(β=0.524), perceived income adequacy(β=0.926), perceived health condition(β=0.682), presence of chronic disease(β=0.529), caregiving stress(β=0.633), life satisfaction score(β=-0.775), physical subscale score (β=-0.824) and mental subscale score(β=-0.489) quality of life had an influence on the caregiving burden (p<0.001). It was determined that the effective determining factors account for 76.4% of the variation in the caregiving burden. Conclusions: The caregivers of Alzheimer’s disease patients have a high caring burden. In addition to the socio-demographic and health characteristics of caregivers, caregiving stress, life satisfaction, and quality of life are important determinants of the caring burden. [ABSTRACT FROM AUTHOR]

Objectives: To identify changes in loneliness and carer stress between two time points for older people of different ethnicities who had repeated interRAI home care assessments. Methods: Participants consisted of community‐dwelling older adults across New Zealand who received two interRAI‐HC assessments between 5 July 2012 and 31 December 2019. Two multistate models were developed: the first model was not lonely versus lonely, and the second model was no carer stress versus carer stress. The one‐year transition probabilities were calculated. Mean sojourn times were calculated for each state except death. Paired t‐tests assessed the differences in transition probabilities between the different ethnic groups. Results: The mean age of the cohort was 82.5 years (SD 7.7 years). At first assessment, 14,646 (21%) older people stated they were lonely and 26,789 carers (38%) experienced stress. The most common first transition type was not lonely to not lonely: Māori 42%, Pacific 54%, Asian, 48% and Other 40%. The highest one‐year transition probability in the loneliness model was living in aged residential care to death (0.79). The most common first transition type for the carer stress was no carer stress to no carer stress: Māori 35%, Pacific, 46%, Asian, 43% and Other 33%. The highest one‐year transition probability in the carer stress model was living in aged residential care to death (0.80). The statuses not lonely and no carer stress had a mean sojourn time of approximately one year, and eight months to one year, respectively. Conclusions: Loneliness can change over time due to circumstances and an individual's perception of loneliness at the time of assessment. Carer stress is enduring and has a low probability of improvement. [ABSTRACT FROM AUTHOR]

Abstract Background Alzheimer's disease and related dementias (ADRD) present growing global health challenges, especially in aging populations, such as Uganda. In Uganda, familial caregiving, predominantly undertaken by female relatives, is the primary form of support provided to patients with ADRD. Cultural stigma around dementia and limited access to support services amplify caregivers' challenges. This study examined psychological distress, depression, and quality of life (QoL) among family caregivers of patients with ADRD in Wakiso District, Uganda. Methods This cross-sectional study involved 90 caregivers from three sub-counties in Wakiso, selected through purposive sampling to capture diverse experiences. Participants included caregivers aged 18 years and older who were knowledgeable and had cared for a person with ADRD for not less than six months, with those providing more than 70% of physical care being prioritised. Data were collected using the Kessler Psychological Distress Scale, the Caregiver Dementia Quality of Life Measurement Scale, and the Center for Epidemiologic Studies Depression Scale, with an 80% response rate achieved through local collaboration. The statistical analyses focused on psychological distress, QoL, and depression. Results The study included 82.2% females and 17.8% males, with a median age of 52 years for females and 35 years, respectively. Females were more likely to be single or widowed, whereas males were more likely to be married. The study revealed a high prevalence of psychological distress and depression among caregivers (64.4%) regardless of sex. The analysis indicated that having children was a significant predictor of better QoL (OR 3.04, 95% CI 1.79–5.66, p = 0.034) and a lower risk of depression (OR 0.10, 95% CI 0.01–0.86, p = 0.036). No other sociodemographic factors were significantly associated with health outcomes across the models. Conclusion Our findings revealed a heavy burden of psychological distress and depression among Ugandan caregivers of patients with ADRD, highlighting the need for structured support systems, including mental health services and gender-responsive interventions in low-resource settings.

Background: Alzheimer's disease and related dementias (ADRD) present growing global health challenges, especially in aging populations, such as Uganda. In Uganda, familial caregiving, predominantly undertaken by female relatives, is the primary form of support provided to patients with ADRD. Cultural stigma around dementia and limited access to support services amplify caregivers' challenges. This study examined psychological distress, depression, and quality of life (QoL) among family caregivers of patients with ADRD in Wakiso District, Uganda. Methods: This cross-sectional study involved 90 caregivers from three sub-counties in Wakiso, selected through purposive sampling to capture diverse experiences. Participants included caregivers aged 18 years and older who were knowledgeable and had cared for a person with ADRD for not less than six months, with those providing more than 70% of physical care being prioritised. Data were collected using the Kessler Psychological Distress Scale, the Caregiver Dementia Quality of Life Measurement Scale, and the Center for Epidemiologic Studies Depression Scale, with an 80% response rate achieved through local collaboration. The statistical analyses focused on psychological distress, QoL, and depression. Results: The study included 82.2% females and 17.8% males, with a median age of 52 years for females and 35 years, respectively. Females were more likely to be single or widowed, whereas males were more likely to be married. The study revealed a high prevalence of psychological distress and depression among caregivers (64.4%) regardless of sex. The analysis indicated that having children was a significant predictor of better QoL (OR 3.04, 95% CI 1.79–5.66, p = 0.034) and a lower risk of depression (OR 0.10, 95% CI 0.01–0.86, p = 0.036). No other sociodemographic factors were significantly associated with health outcomes across the models. Conclusion: Our findings revealed a heavy burden of psychological distress and depression among Ugandan caregivers of patients with ADRD, highlighting the need for structured support systems, including mental health services and gender-responsive interventions in low-resource settings. [ABSTRACT FROM AUTHOR]

Introduction The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. Methods A case series of terminal cancer patient-caregiver dyads (n  = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. Results Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). Conclusions Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services. [ABSTRACT FROM AUTHOR]

Background/Purpose: Older patients living with dementia and their caregivers are ideal beneficiaries of telemedicine, cost-effectiveness, caregiver satisfaction, and physician acceptance. The aim is to study the effect of a telemedicine dementia enabled program on the health outcome of dementia patients and their caregivers, as regard the patient outcome, caregiver stress, and caregiver satisfaction. Methods: Ninety-seven (n = 97) elderly subjects were recruited from the outpatient clinics and inpatient ward of Geriatrics Hospital, Ain Shams University Hospitals. Seventy subjects completed 6 months of follow-up using a telegeriatrics model. Patient outcomes (delirium, behavioral and psychological symptoms of dementia [BPSD], and need for home consultations, emergency room [ER] visits, clinic visits, and hospital admissions) were assessed and followed. Caregiver stress was evaluated and monitored using the abridged Arabic version of the Zarit Burden Interview ZBI-A. Caregiver satisfaction was assessed using dedicated satisfaction questionnaire designed by Ain Shams Virtual Hospital. Results: elirium episodes, BPSD episodes, and the need for home consultations, clinic visits, ER visits, and hospital admissions. This was statistically significant after the second, fourth, and sixth months of follow-up (p-value <0.001). In addition, the telegeriatrics follow-up model had a positive effect on both caregiver stress and caregiver satisfaction. Conclusions: The telegeriatrics follow-up model is a useful tool in the improvement of health outcomes of dementia patients, reduction of caregiver stress, and achievement of caregiver satisfaction. [ABSTRACT FROM AUTHOR]

In this paper, I create a framework that explains how homelessness reduces a child's attachment security. Attachment theory states how over time and repeated interactions, children and caregivers develop patterns of behavior that foster the development of children's schemas about what to generally expect from relationships with others. In order for children to develop secure attachments, a caregiver must be consistent and sensitive when responding to their child. Homeless caregivers have to juggle many stressors at once and therefore have fewer mental or physical resources (the effects of caregiver stress) to devote to consistent, sensitive, and responsive caregiving. This theoretically grounded framework proposes that stressors affect homeless caregivers, which in turn affects their effective parenting effort, which ultimately impacts the child's attachment. I describe in detail each of the proposed associations in the framework and summarize existing literature that supports these theoretical processes. Limitations and future directions are also discussed. [ABSTRACT FROM AUTHOR]

This study examined daily occurrences of behavioral and psychological symptoms of dementia (BPSD) and whether caregivers' perceived distress towards BPSD varies throughout four phases of the day (i.e., morning, daytime, evening, and night). Family caregivers residing with relatives who were using adult day services (ADS) participated in an 8-day daily diary study (caregiver N = 173; caregiver-day N = 1,359). BPSD occurred most frequently in the evenings. ADS use, sleep disturbances, and dementia severity were significantly associated with BPSD occurrence for some phases of the day. Caregivers' distress towards BPSD occurrences increased throughout the day (i.e., most stressful at night). However, caregivers showed lower reactivity to BPSD at night on days when their relatives used ADS. Evidence of temporal patterns of BPSD in community-dwelling older adults and caregiver distress demonstrated the importance of ADS use for BPSD reactivity and identified potential target windows and associated contextual factors for individualized interventions. [ABSTRACT FROM AUTHOR]

In this convergent parallel mixed-methods study, we investigated the early impact of the COVID-19 stay-at-home mandate in Illinois on 16 caregivers of children with autism. Our goal was to understand contributors to caregivers’ stress by integrating qualitative and quantitative data. Through a joint display, we explored the intricate relationship between caregivers’ perceptions of their child’s needs, the loss of essential services, and stress levels. The caregivers’ reported needs, wishes, barriers, and coping strategies informed and corroborated final quantitative results on stress levels. Significant associations were found between stress levels and caregivers’ agreement with statements on child supervision, service loss, and perceived level of their child’s independence. These findings underscore the importance for robust support systems that enhance family resilience and validate prior research during exceptional circumstances. They offer insights for policymakers and service providers seeking to improve the well-being of families raising children with autism, particularly in times of crisis.

BackgroundThe emotional stress of caring for someone with Alzheimer's disease and related dementias is high and results in adverse effects on caregivers and the persons living with disease. In preliminary work, caregiver reports of regularly feeling "completely overwhelmed" were associated with lack of measurable clinical benefit from a comprehensive dementia care program.ObjectiveTo examine the sociodemographic and clinical characteristics of all caregivers who felt overwhelmed at entry into a comprehensive dementia care program, the trajectory of this symptom over 1 year, and its predictive value for 1-year caregiver outcomes.DesignLongitudinal cohort study SETTING: Academic health center PARTICIPANTS: Caregivers of patients enrolled in a comprehensive dementia care program EXPOSURES: Caregiver report of feeling "completely overwhelmed" at baseline MAIN MEASURES: Caregiver report of feeling "completely overwhelmed" at baseline and 1 year, and validated scales of caregiver strain, distress, depressive symptoms, burden, mortality, and long-term nursing home placement KEY RESULTS: Compared to caregivers who were not overwhelmed, overwhelmed caregivers had more distress from behavioral symptoms of the person living with dementia, worse depression scores, and higher composite dementia burden scores at baseline. They also had worse depressive symptoms, strain, and composite burden scores at 1 year, after adjustment for baseline scores. Having an overwhelmed caregiver did not predict long-term nursing home placement or mortality among persons with dementia.ConclusionsA single question about whether a caregiver is overwhelmed might indicate caregivers who have considerable current and future symptom burden and who may benefit from increased support and resources.

Background and Objectives Around eight million older adults have internally migrated to take care of grandchildren in China. This study aimed to explore how Chinese migrant and nonmigrant grandparents perceived successful aging and how they coped with challenges to successful aging. Research Design and Methods Based on ecological systems theory, semistructured interviews were conducted among 21 grandparents (12 migrants, median age = 59 years old) from urban areas in China who provided noncustodial grandchild care. Deductive content analysis was employed to examine the data pertaining to the definition of successful aging, the stressors encountered, and coping strategies employed by both groups. Results Findings revealed that both migrant and nonmigrant grandparents placed a higher emphasis on family prosperity than their own physical health, in their definitions of successful aging. Although both groups experienced common stressors in the microsystem (e.g. intergenerational conflicts), migrant grandparents uniquely encountered stressors in the mesosystem (e.g. hardships in their close relationships) and in the macrosystem (e.g. uncertainty in aging preparation). In terms of coping, migrant grandparents exhibited a distinctive pattern of utilizing avoidant coping strategies when navigating intergenerational conflicts and planning for their later life, compared to nonmigrant grandparents. Discussion and Implications Our findings suggested that although migration was not associated with grandparents' definition of successful aging, migrant grandparents encountered specific challenges in achieving successful aging. This highlights the necessity of providing more support to grandparents through the family, community, or state, particularly to those who are migrants. [ABSTRACT FROM AUTHOR]

Background and Objectives Driving retirement can be a necessary but challenging and emotionally complex transition, especially for people living with dementia. This pilot study evaluated the utility of CarFreeMe™-Dementia (CFM™-D), a telehealth intervention providing tailored education and social support to those living with dementia and their care partners, as they prepare for or adjust to driving retirement. Delivered by empathetic health professionals, CFM™-D is a person-centric, flexible program tailored to address challenges specific to the participants' driving retirement stage and individualized contexts. Research Design and Methods A single-arm, mixed-methods design was used to follow participants over a 6-month period. Participants received CFM™-D, a 7–8-module semistructured intervention, including education and planning support for driving retirement (impact of dementia, transportation options) and emotional adjustment (grief and loss, stress management). Surveys evaluated the perceived utility of intervention components as well as changes in well-being and readiness for driving retirement over time. An open-ended survey item and semistructured interviews provided additional feedback and a contextual understanding of the empirical data. Results A total of 50 families enrolled (17 care partners, 16 retiring/retired drivers with memory loss, and 17 care partner-retiring/retired driver dyads). Nearly all participants would recommend the intervention. Care partners reported significantly reduced (p  < .05) isolation and relationship strain, and retiring drivers reported significant reductions in depressive symptoms. Driving retirement preparedness scores improved. Driving retirement phase, enrolling as a dyad, and retiring driver cognitive/functional impairment were associated with these outcomes. Participants also engaged in more driving retirement activities outside of the intervention (e.g. talking with health professionals). Discussion and Implications CFM™-D is a useful intervention for retiring drivers with dementia and their family members, with preliminary data suggesting it supports improved well-being and driving retirement preparedness. A randomized controlled trial is needed to determine the efficacy of the CFM™-D intervention and future translation needs. [ABSTRACT FROM AUTHOR]

In this convergent parallel mixed-methods study, we investigated the early impact of the COVID-19 stay-at-home mandate in Illinois on 16 caregivers of children with autism. Our goal was to understand contributors to caregivers' stress by integrating qualitative and quantitative data. Through a joint display, we explored the intricate relationship between caregivers' perceptions of their child's needs, the loss of essential services, and stress levels. The caregivers' reported needs, wishes, barriers, and coping strategies informed and corroborated final quantitative results on stress levels. Significant associations were found between stress levels and caregivers' agreement with statements on child supervision, service loss, and perceived level of their child's independence. These findings underscore the importance for robust support systems that enhance family resilience and validate prior research during exceptional circumstances. They offer insights for policymakers and service providers seeking to improve the well-being of families raising children with autism, particularly in times of crisis. [ABSTRACT FROM AUTHOR]

Abstract Background It is important to understand and identify the physical and emotional strain among caregivers of the elderly as caregivers may have much more strain and burden than non-caregivers, which subsequently may affect their well-being and the clinical outcome of the elderly they are caring for. Methods To assess caregiver stress and its effect on hospital outcomes at the geriatric department in Ain Shams University Hospitals, a cross-sectional study was done that included adults, aged ≥ 60 years, hospitalized for treatment of acute medical conditions and their accompanied caregivers where the patients were subjected to complete comprehensive geriatric assessment while cares givers’ stress was assessed using Caregiver Self-Assessment Questionnaire. Results Many elderly were found to need caregivers and the need increased with age as well as multiple comorbidities especially dementia, delirium, and urinary incontinence. Stress prevalence among caregivers is high (85%) and it increases with the age of the patients and the patient having several comorbidities such as cancer, neurological diseases, and sleep problems. Stress was also associated with high mortality of patients. Conclusion As there is an increase in the elderly population with a subsequent increase in the need for caregivers who suffer from caregiver stress, more studies are needed in the future to highlight this problem and find ways to relieve caregivers’ stress.

Background: It is important to understand and identify the physical and emotional strain among caregivers of the elderly as caregivers may have much more strain and burden than non-caregivers, which subsequently may affect their well-being and the clinical outcome of the elderly they are caring for. Methods: To assess caregiver stress and its effect on hospital outcomes at the geriatric department in Ain Shams University Hospitals, a cross-sectional study was done that included adults, aged ≥ 60 years, hospitalized for treatment of acute medical conditions and their accompanied caregivers where the patients were subjected to complete comprehensive geriatric assessment while cares givers' stress was assessed using Caregiver Self-Assessment Questionnaire. Results: Many elderly were found to need caregivers and the need increased with age as well as multiple comorbidities especially dementia, delirium, and urinary incontinence. Stress prevalence among caregivers is high (85%) and it increases with the age of the patients and the patient having several comorbidities such as cancer, neurological diseases, and sleep problems. Stress was also associated with high mortality of patients. Conclusion: As there is an increase in the elderly population with a subsequent increase in the need for caregivers who suffer from caregiver stress, more studies are needed in the future to highlight this problem and find ways to relieve caregivers' stress. [ABSTRACT FROM AUTHOR]

Introduction: The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed. [ABSTRACT FROM AUTHOR]

BackgroundThe emotional stress of caring for someone with Alzheimer's disease and related dementias is high and results in adverse effects on caregivers and the persons living with disease. In preliminary work, caregiver reports of regularly feeling "completely overwhelmed" were associated with lack of measurable clinical benefit from a comprehensive dementia care program.ObjectiveTo examine the sociodemographic and clinical characteristics of all caregivers who felt overwhelmed at entry into a comprehensive dementia care program, the trajectory of this symptom over 1 year, and its predictive value for 1-year caregiver outcomes.DesignLongitudinal cohort study SETTING: Academic health center PARTICIPANTS: Caregivers of patients enrolled in a comprehensive dementia care program EXPOSURES: Caregiver report of feeling "completely overwhelmed" at baseline MAIN MEASURES: Caregiver report of feeling "completely overwhelmed" at baseline and 1 year, and validated scales of caregiver strain, distress, depressive symptoms, burden, mortality, and long-term nursing home placement KEY RESULTS: Compared to caregivers who were not overwhelmed, overwhelmed caregivers had more distress from behavioral symptoms of the person living with dementia, worse depression scores, and higher composite dementia burden scores at baseline. They also had worse depressive symptoms, strain, and composite burden scores at 1 year, after adjustment for baseline scores. Having an overwhelmed caregiver did not predict long-term nursing home placement or mortality among persons with dementia.ConclusionsA single question about whether a caregiver is overwhelmed might indicate caregivers who have considerable current and future symptom burden and who may benefit from increased support and resources.

Abstract Background Few studies have examined whether family caregivers' own primary care providers can affect caregiving‐specific well‐being, such as caregiver stress. In this pilot study, we explored whether primary care experiences when family caregivers report as patients were associated with the stress of caregiving. Methods We used cross‐sectional data from a survey conducted in Japan between November and December 2020. We recruited family caregivers aged 40–74 years who were caring for community‐dwelling adults with chronic conditions. We assessed primary care experience using the Japanese version of the Primary Care Assessment Tool Short Form (JPCAT‐SF) and caregiver stress using the Japanese short version of the Zarit Caregiver Burden Interview. Results In total, 406 family caregivers were included in the analysis. The mean JPCAT‐SF total score was 42.1 out of 100 points. The proportion of caregivers who had higher caregiver stress was 48.8%. After adjusting for possible confounders, the JPCAT‐SF score was found to be significantly associated with caregiver stress (lower stress = 0 vs. higher stress = 1; adjusted prevalence ratio per 1 SD increase in JPCAT‐SF score = 0.89; 95% CI 0.80–0.98). Among the subscales of the JPCAT‐SF, longitudinality, and comprehensiveness (services available) were associated with caregiver stress. Conclusions Better primary care experiences when family caregivers reported as patients were associated with lower caregiver stress. Longitudinality, which includes focusing attention on the individual as a whole person, and comprehensiveness in the context of building provider‐patient relationships that make consultation easier when needed, were associated with lower stress.

IntroductionThe discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition.MethodsWe conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress.ResultsFor most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia.ConclusionFew dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed.

Research indicates strong connections between child ADHD, child ODD/CD, and sleep. Children experiencing these concerns also have caregivers who report feeling more stress. However, no studies have examined how child ADHD and ODD/CD interact together and with insufficient sleep to potentially exacerbate caregiver stress. Data were acquired from the 2018/2019 National Survey of Children's Health, a nationally representative survey of parents or caregivers conducted across the United States (U.S.). The current study used data for children 6-17 years old with a final analytic sample size of 41,541, representing a total of 47,357,862 U.S. youth. Overall child ADHD and ODD/CD were each uniquely associated with increased caregiver stress, while adequate child sleep duration was related to decreased caregiver stress. However, these findings were qualified by a significant two-way interaction that revealed that caregiver stress among children with comorbid ADHD and ODD/CD was not significantly greater than that of children with ODD/CD alone. Significant interactions between sleep and ODD/CD on caregiver stress were generally not observed, except potentially in females with ADHD. Our findings underscore the importance of considering strategies to reduce both youth symptoms and caregiver stress simultaneously. Additionally, ensuring adequate sleep for all children is recommended. [ABSTRACT FROM AUTHOR]

Stress experienced by family caregivers of individuals with opioid use disorder (OUD) contributes to caregiver burden. To understand the stressors experienced by family caregivers of individuals with OUD and the factors that influence their personal resiliency, data were collected from a convenience sample of family caregivers who answered two open-ended questions about sources of stress and factors that affect their personal resilience as part of an online survey. Yin's thematic analysis revealed five objective and two subjective burden themes and four resilience themes. Results indicate OUD places significant burden on families and may contribute to decreased physical and mental well-being in caregivers. Caregivers who perceived adequate support were able to use their experience and innate knowledge to cope and emerge with more resilience. Results of this study support the need for translational research to increase resilience and coping in this population of caregivers. [ABSTRACT FROM AUTHOR]

• A home-based whole-body manual massage protocol was developed. • The manual massage intervention was observed to be safe and easily administered by family caregivers with minimal training. • Family caregiver–administered home-based massage was found to reduce the behavioral and psychological symptoms of dementia and caregiver stress. • Massage therapy has the potential to serve as a feasible and effective approach to educate and empower dementia caregivers and to develop support services. To investigate the effectiveness of family caregiver–administered home-based manual massages in managing dementia symptoms and reducing caregiver stress. Thirty-eight pairs of participants—patients with dementia and their family caregivers—were randomly allocated to the experimental or the control group. The caregivers underwent 3-h-long massage training. Subsequently, the patients received a 30-min-long, home-based massage from their caregivers thrice a week for 8 consecutive weeks. The Cornell Scale for Depression in Dementia (CSDD), Cohen-Mansfield Agitation Inventory (CMAI), and Perceived Stress Scale (PSS) were assessed before and after the interventions. After intervention, the experimental group exhibited significant improvements in CSDD and CMAI scores compared with the scores of the control group (all p <.001). Furthermore, the experimental group obtained more favorable PSS scores than did the control group (p =.013). Family caregiver–administered home-based massage therapy is recommended for managing dementia symptoms and reducing caregiver stress. [ABSTRACT FROM AUTHOR]

Background: Few studies have examined whether family caregivers' own primary care providers can affect caregiving‐specific well‐being, such as caregiver stress. In this pilot study, we explored whether primary care experiences when family caregivers report as patients were associated with the stress of caregiving. Methods: We used cross‐sectional data from a survey conducted in Japan between November and December 2020. We recruited family caregivers aged 40–74 years who were caring for community‐dwelling adults with chronic conditions. We assessed primary care experience using the Japanese version of the Primary Care Assessment Tool Short Form (JPCAT‐SF) and caregiver stress using the Japanese short version of the Zarit Caregiver Burden Interview. Results: In total, 406 family caregivers were included in the analysis. The mean JPCAT‐SF total score was 42.1 out of 100 points. The proportion of caregivers who had higher caregiver stress was 48.8%. After adjusting for possible confounders, the JPCAT‐SF score was found to be significantly associated with caregiver stress (lower stress = 0 vs. higher stress = 1; adjusted prevalence ratio per 1 SD increase in JPCAT‐SF score = 0.89; 95% CI 0.80–0.98). Among the subscales of the JPCAT‐SF, longitudinality, and comprehensiveness (services available) were associated with caregiver stress. Conclusions: Better primary care experiences when family caregivers reported as patients were associated with lower caregiver stress. Longitudinality, which includes focusing attention on the individual as a whole person, and comprehensiveness in the context of building provider‐patient relationships that make consultation easier when needed, were associated with lower stress. [ABSTRACT FROM AUTHOR]

There is widespread concern that elder abuse and neglect (EAN) incidents increased during the onset of the COVID-19 pandemic due in part to increases in risk factors. Initial reports relying on administrative systems such as adult protective services records produced mixed results regarding whether or not there was a change in EAN incidents. Using data from an ongoing longitudinal study on EAN in dementia family caregiving that started before the pandemic, we assessed the hypothesis that the pandemic is related to a change in probability of EAN and EAN protective factors. Family caregivers to persons with dementia completed two waves of 21 daily diaries, 6-months apart, assessing their daily use of EAN behaviors. The first group (n = 32) completed their first wave before the pandemic and their second wave during the pandemic. The second group (n = 32) completed both waves during the pandemic. For this cohort, the generalized linear mixed logistic model results showed inconsistent associations between the onset of COVID-19 and the probability of a caregiver engaging in elder abuse or neglect behaviors. In terms of protective factors, the use of formal services was not significantly impacted by COVID-19; however, the likelihood of receiving informal support from family and friends increased significantly during the pandemic period. Dementia family caregivers were not likely impacted negatively by initial pandemic restrictions, such as shelter-in-place orders, as anticipated. These findings contribute to our understanding of how distal, disruptive processes may influence more proximal caregiver stresses and the likelihood of EAN. [ABSTRACT FROM AUTHOR]

It is well-established that caregiver stress is linked to increased emotional distress among children, and recent evidence highlights similar associations between caregiver and child emotional well-being during the coronavirus (COVID-19) pandemic. Examining protective factors and coping mechanisms that are associated with resiliency in the face of pandemic-related stress can highlight potential strategies that may help children adapt to other unexpected hardships outside of a global pandemic. Previous research found that playing about the pandemic moderated an association between caregiver stress and children's emotional distress. However, few studies have explored "pandemic play" among children from low-income households, where pandemic-related stressors were often exacerbated. In the present study, 72 caregivers of Head Start preschoolers between 3 and 6 years of age were surveyed between late 2020 and early 2021. Results revealed that 32% of children engaged in pandemic play frequently. Caregiver stress was positively associated with child emotional distress, but only among children who did not engage in pandemic play frequently. These findings support the idea that child-directed play may be a developmentally appropriate and accessible coping mechanism to reduce the emotional burden of stressful events on children, regardless of economic context. [ABSTRACT FROM AUTHOR]

Background and Objectives Grandparents are key resources in grandchildren care globally. However, mixed findings indicated that multiple role engagement may enhance well-being and bring demands on grandparent caregivers in different contexts. This systematic review examines the association between the intensity of grandparent caregiving and their health and well-being (i.e. physical, mental, cognitive, and life satisfaction) by continent and country/region. Research Design and Methods Systematic searches were conducted in 4 databases. Peer-reviewed articles with quantitative designs published between 1990 and November 2021 were identified. A rigorous selection process was followed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The studies were critically appraised, and their results were narratively synthesized. Results Sixty-five articles from 29 countries/regions were included. Findings suggested a concave curvilinear relationship between the intensity of grandparent caregiving and their health and well-being, with the optimal caregiving intensity varying across sociocultural contexts. In Europe, Oceania, the Middle East, and South America, providing supplementary or occasional care seems beneficial for grandparents' health and well-being, especially supporting dual-earner families. In East Asia, economic resources appear to buffer the adverse effect of primary care on grandparents' well-being. In the United States, findings vary across ethnicity/race. Discussion and Implications Collectively, the intensity of grandparent caregiving, health, and well-being is complicated by grandparents' roles in the family and cultural differences. Acknowledging the bidirectional relationship between well-being and grandparents' capacity for providing care, the well-being as outcome is a limitation. Despite so, this systematic review calls for culturally-tailored family programs to support grandparent caregiving. [ABSTRACT FROM AUTHOR]

Background and objectivesManaging medications can be stressful for spousal caregivers, but little is known about particular aspects of medication management that are most consequential for caregiving outcomes. We examined care stressors and resources related to medication management, their associations with role overload among spousal caregivers, and whether these links vary by care recipients' number of chronic health conditions and dementia status.Research design and methodsThis cross-sectional study included 377 spousal caregivers of adults aged 65 and older from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate how medication-related stressors (ordering medication, keeping track of medications, giving injections) and resources (medication reminder systems, shared medication management within the spousal dyad) are associated with caregivers' role overload. Care recipients' number of chronic health conditions and dementia status were considered as moderators. Models controlled for caregivers' sociodemographic characteristics, chronic health conditions, and other care tasks.ResultsCaregivers who administered injections reported more role overload, whereas those who worked with care recipients to jointly manage medications reported less role overload. Keeping track of medications was linked to caregivers' greater role overload when care recipients had 5 or more chronic health conditions. Finally, care recipients' use of medication reminder systems was linked to less role overload for caregivers of a partner with dementia.Discussion and implicationsDevising strategies to assist spousal caregivers in the more onerous components of medication management and promote resources that mitigate medication-related stress may improve caregiver well-being.

The etiology of autism spectrum disorder (ASD) is multifactorial and complex and likely involves interactions among genetic, epigenetic and environmental factors. With respect to environmental influences, a growing literature implicates intrauterine experiences in the origin of this pervasive developmental disorder. In this prospective longitudinal design, we examine the hypothesis that fetal exposure to maternal cortisol may confer ASD risk. In addition, because ASD is four times more prevalent in males than females and because sexually dimorphic responses to intrauterine experiences are commonly observed, we examine whether or not any associations differ by fetal sex. Maternal plasma cortisol was measured at 15, 19, 25, 31, and 37 weeks' gestation in a sample of 84 pregnant women. ASD symptoms were assessed in their 5-year old children with the Social Communication Questionnaire (SCQ). Fetal exposure to lower levels of maternal cortisol was associated with higher levels of ASD symptoms among boys only. The observed hypocortisolemic profile exhibited by these mothers may indicate a risk factor that precedes the stress of caregiving for a child with ASD and may not be solely a consequence of the stress of caregiving as previously thought. Further, these findings confirm the value of examining prenatal hormone exposures as predictors of ASD risk and support the premise that altered prenatal steroid exposures may play a role in the etiology of ASD.

Abstract Introduction Older adults with Alzheimer’s disease (AD) experience drastic changes in their physical and mental abilities. AD patients became heavily dependent on their caregivers for everyday functions, which have significant implications not only for them but also for their caregivers. So, many AD caregivers experienced an increased level of depression and anxiety symptoms, lower perceived control, and higher burden compared to non-AD caregivers. Therefore, psychological first aid (PFA) and educational interventions are designed to enable those caregivers to meet the daily requirements of their patient care and to cope with its challenges. Aim Determine the effect of psychological first aid program on stress level and psychological well-being among caregivers of older adults with Alzheimer’s disease. Design One group pre-test post-test was followed. Subjects A convenience sample of one hundred (100) caregivers of older adults with AD. Setting All online groups concerned with the care of Alzheimer’s disease patients on Facebook. Tools Socio-demographic and clinical data of older adults with Alzheimer’s disease and their caregivers’ questionnaire, Alzheimer’s disease knowledge scale, Kingston caregiver stress scale, and authentic identity measures (AIM) scale of psychological well-being Results The psychological first aid program has highly statistically significant effect on the AD caregivers’ knowledge, stress level and psychological well-being as (t=-30.707, P = 0.000, t = 8.500, P = 0.000 & t= -4.763, P = 0.000 respectively). Conclusion Psychological first aid program is considered an effective intervention in decreasing the AD caregivers’ stress and increasing their psychological wellbeing and knowledge regarding delivering care for AD patients.

It is well-established that caregiver stress is linked to increased emotional distress among children, and recent evidence highlights similar associations between caregiver and child emotional well-being during the coronavirus (COVID-19) pandemic. Examining protective factors and coping mechanisms that are associated with resiliency in the face of pandemic-related stress can highlight potential strategies that may help children adapt to other unexpected hardships outside of a global pandemic. Previous research found that playing about the pandemic moderated an association between caregiver stress and children’s emotional distress. However, few studies have explored “pandemic play” among children from low-income households, where pandemic-related stressors were often exacerbated. In the present study, 72 caregivers of Head Start preschoolers between 3 and 6 years of age were surveyed between late 2020 and early 2021. Results revealed that 32% of children engaged in pandemic play frequently. Caregiver stress was positively associated with child emotional distress, but only among children who did not engage in pandemic play frequently. These findings support the idea that child-directed play may be a developmentally appropriate and accessible coping mechanism to reduce the emotional burden of stressful events on children, regardless of economic context.

Introduction: Informal caregivers are the backbone of recovery for people with severe mental disorders in South Africa, particularly in rural areas where access to mental health services is limited. While their unique contribution and the subsequent burden arising from occupying the role of informal caregiver are acknowledged, there is limited evidence on the extent of the subjective and objective burdens among informal caregivers of people with severe mental disorders in rural areas. This article reports on a study that aimed to establish the extent of subjective and objective burdens among informal caregivers of people with severe mental disorders in rural South Africa. Methods: A descriptive quantitative cross-sectional design was used. Data were gathered through structured interviews with 170 informal caregivers of people with severe mental disorders attending an outpatient clinic at a rural hospital in South Africa. A structured questionnaire guided the interviews and included demographics and caregiving characteristic information. Montgomery, Gonyea and Hooyman's scale was used to assess objective and subjective burdens. Data was analysed descriptively using Stata v15. Results: The majority of the participants were female informal caregivers (83.5%) between the ages of 45 and 64 years (45.3%), and parents represented the largest proportion (45.3%) of caregivers. The global burden scores revealed that most informal caregivers reported moderate-to-severe objective burden and mild-to-moderate subjective burden. Significant associations with objective burden were established for age, gender and residence (p=0.025, p=0.034 and p=0.038, respectively), and subjective burden yielded significant associations with daily caregiving (p=0.012). Conclusion: Caring for people with severe mental disorders is associated with high levels of objective and subjective burdens. The present study highlights the need to integrate the assessment of burdens among informal caregivers of people with severe mental disorders in routine clinical practice. Additionally, the study urgently calls for the development of strategies to support informal caregivers to ensure successful community reintegration among people with severe mental disorders.

Background: A better understanding of factors associated with caregiver burden might facilitate the construction of coping strategies to improve their clinical outcomes and the comprehensive care model for dementia. Objective: To investigate the cognitive and neuropsychiatric domains that contribute to caregiver burden in three types of neurodegenerative disorders: Parkinson's disease (PD), Alzheimer's disease (AD), and frontotemporal disease (FTD). Methods: Eight hundred and fourteen patients and their caregivers were invited to participate; among them, 235 had PD with cognitive impairment; 429 had AD, and 150 had FTD. The evaluation protocol included the Neuropsychiatric Inventory (NPI), the Mini-Mental State Examination, the Chinese Version Verbal Learning Test, the modified Trail Making Test B, semantic fluency, and a geriatric depression score. Statistical comparisons of the cognitive tests, NPI total scores, and caregiver burden among the three diagnosed types of dementia, matched for a Clinical Dementia Rating (CDR) of 0.5 or 1, were performed, and multivariate linear regression models were used to evaluate the parameter significance. Results: Caregivers for patients with PD and FTD showed significant burden increments when the CDR scores changes from 0.5 to 1. For CDR = 0.5, the PD group had significantly lower caregiver burdens than the AD group, but the NPI total scores were significantly higher. Factors related to caregiver burden were the presence of delusion among all diagnosis groups, while the impact of NPI total scores related to caregiver burden was the highest in FTD, followed by AD and PD. Conclusions: At the mild to moderate stages, our results suggested different degrees of significance in terms of the cognitive test scores or NPI subdomains for predicting caregiver stress among the three types of dementia. [ABSTRACT FROM AUTHOR]

Introduction: Informal caregivers are the backbone of recovery for people with severe mental disorders in South Africa, particularly in rural areas where access to mental health services is limited. While their unique contribution and the subsequent burden arising from occupying the role of informal caregiver are acknowledged, there is limited evidence on the extent of the subjective and objective burdens among informal caregivers of people with severe mental disorders in rural areas. This article reports on a study that aimed to establish the extent of subjective and objective burdens among informal caregivers of people with severe mental disorders in rural South Africa. Methods: A descriptive quantitative cross-sectional design was used. Data were gathered through structured interviews with 170 informal caregivers of people with severe mental disorders attending an outpatient clinic at a rural hospital in South Africa. A structured questionnaire guided the interviews and included demographics and caregiving characteristic information. Montgomery, Gonyea and Hooyman’s scale was used to assess objective and subjective burdens. Data was analysed descriptively using Stata v15. Results: The majority of the participants were female informal caregivers (83.5%) between the ages of 45 and 64 years (45.3%), Rural and Remote Health rrh.org.au James Cook University ISSN 1445-6354 1 2 3 1 2 3 and parents represented the largest proportion (45.3%) of caregivers. The global burden scores revealed that most informal caregivers reported moderate-to-severe objective burden and mild-to-moderate subjective burden. Significant associations with objective burden were established for age, gender and residence (p=0.025, p=0.034 and p=0.038, respectively), and subjective burden yielded significant associations with daily caregiving (p=0.012). Conclusion: Caring for people with severe mental disorders is associated with high levels of objective and subjective burdens. The present study highlights the need to integrate the assessment of burdens among informal caregivers of people with severe mental disorders in routine clinical practice. Additionally, the study urgently calls for the development of strategies to support informal caregivers to ensure successful community reintegration among people with severe mental disorders. [ABSTRACT FROM AUTHOR]

The extent to which people with dementia are involved in everyday decision-making is unclear. We explored informant-rated involvement of people with dementia in everyday decision-making over 2 years and whether functional, behavioral, and psychological factors related to the person with dementia and the caregiver explain variability in involvement of people with dementia in everyday decision-making. We used IDEAL data for 1182 people with dementia and their caregivers. Baseline mean score on the decision-making involvement scale was 31/45; it minimally declined over time. People with dementia who were female, single, and/or whose caregiver was younger had greater involvement in everyday decision-making than those without these characteristics. Better cognition, fewer functional difficulties, fewer neuropsychiatric symptoms, less caregiver stress, and better informant-rated relationship quality were associated with higher involvement in everyday decision-making. Cognitive and functional rehabilitation, and educational resources for caregivers, could prolong involvement of people with dementia in everyday decision-making. [ABSTRACT FROM AUTHOR]

Abstract Background Prolonged caregiving of an older adult can cause family caregivers to be overwhelmed, potentially affecting the well-being of both the caregivers and their care-recipients. Carer Matters is a holistic hospital-to-home programme, centred on caregivers’ needs as their care-recipients transit from hospital to home. The programme was piloted to support caregivers through caregivers needs assessment, tailored resources, tele-support, training courses, and community support network. This study aimed to examine the feasibility of Carer Matters in a tertiary hospital in Singapore. Methods This feasibility study was conducted on the pilot implementation from January to December 2021, during the Covid-19 pandemic. It adopted the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. The study highlighted quantitative data collected from key process indicators, such as number of caregivers screened, assessed on their needs and provided with assistance. Additionally, qualitative data was collected from in-depth interviews with 51 stakeholders involved in the implementation to examine their perspectives and experiences. These included family caregivers, clinician caregiver support nurses, hospital leaders and community partners. Results During the pilot, 550 caregivers were enrolled. All caregivers received educational resources when they completed the needs assessment, while 69 of them who reported high burden were given tele-support and 252 attended our caregiver training courses. Despite initial recruitment challenges and obstacles to adoption, stakeholders interviewed found Carer Matters to be effective in providing caregivers with emotional support, knowledge and skills that improved their caregiving abilities, and reduced their sense of isolation and caregiving stress. Among caregivers, the training courses were effective with majority of caregivers agreeing that the courses addressed their needs (99%) and improved their knowledge of the relevant disease conditions (97%). Programme maintenance considered among stakeholders included strategies such as multipronged approach in recruiting caregivers and inviting caregiver advocates to share their experiences. Conclusion This feasibility study highlights that Carer Matters is a valuable component to the ecosystem of support for family caregivers and their care recipients. Carer Matters extends the current patient-centric care model to a more holistic post-discharge continuity of care for both caregivers and their care-recipients, improving and maintaining their overall well-being to better allow transition from hospital-to home. Trial registration Feasibility Study of Project Carer Matters for Family Caregivers of Persons with Dementia (NCT number: NCT05205135 ).