Caregiver Stress Research Articles

Personality, Aging, and Alzheimer's Disease: Implications for Psychoneuroimmunology and Personalized Medicine.

Psychoneuroimmunology (PNI) advancements may revolutionize personalized medicine by identifying systemic biomarkers that enhance diagnosis and treatment. Inflammatory pathways connect personality traits with cognitive performance, aging-related disorders, and mortality risks. Studies have demonstrated the critical interactions between personality and various biological systems like the hypothalamic-pituitary-adrenal (HPA) axis. The gut-brain axis also affects behaviors and psychological states in older adults, with specific gut microbiota influencing cognition, mood, and personality. These findings underscore the practical implications of understanding personality-biology interactions. They can support preventive and personalized medicine for aging-associated disorders. Specifically, personality changes are prevalent in Alzheimer's disease (AD) patients, impacting clinical management and caregiver stress. Non-cognitive factors, such as personality traits and psychiatric symptoms, may serve as early markers of AD. Traits like high Neuroticism and low Openness can predict initial AD stages, often before a formal diagnosis. Personality alterations in AD are also linked to cerebrospinal fluid (CSF) and vascular imaging biomarkers, which can track AD pathology and serve as predictors. Dynamic personality assessment can aid in timely diagnosis, monitoring progression, and evaluating treatmentsof AD. Understanding personality traits is crucial for predicting burnout, lifespan, and intervention success. Integrating personality and PNI biomarkers into patient profiles will support the development of personalized and systems medicine.

"None of us asked to be in this community." Understanding nephrotic syndrome through TikTok: patient and caregiver perspectives.

TikTok, a popular social media platform, is increasingly used for health information dissemination; however, the accuracy and quality of medical content remain uncertain, including in the context of nephrotic syndrome (NS). This study aims to identify prominent patient and caregiver experiences with NS on TikTok and demonstrate how they may vary. A convenience sample of TikTok videos containing the hashtag "nephrotic syndrome" posted between July 1, 2020, and February 29, 2024, was analyzed. Videos underwent cyclical and inductive coding, followed by content and discourse analysis to identify common themes and narratives. One hundred twenty-three videos were included in the analysis. 62.6% of videos (N = 77) consisted of caregivers sharing their experiences of their child's disease. Three prominent topics included: (1) navigating healthcare and managing illness, where users shared their disease journeys; (2) emotional and physical wellbeing, where caregivers focused on physical disease signs while patients highlighted the mental health toll of the illness; and (3) education, awareness, and support systems, where users shared feelings of social isolation post-diagnosis. The discourse analysis revealed language portraying patients as "warriors," reflecting the resiliency promoted by TikTok support systems. We uncovered a hidden disease burden associated with NS that affects everyday life, reinforcing the importance of the journey and stress patients and caregivers experience outside of the clinician's office. Our findings also highlight that patient priorities may differ from those reported by caregivers, particularly in pediatrics. TikTok may also be an outlet for feelings of isolation and community-building within NS.

Four Alzheimer’s Apps to Implement into a Caregiver’s Daily Routine

Smartphones have become synonymous with modern living, providing users with countless apps to perform endless functions. Harnessing mobile technology to help caregivers of Alzheimer’s Disease patients offers users tools and resources to engage, organize and lessen the stress of caregiving. Medical Librarians, healthcare professionals, family and friends can all benefit from learning about four popular Alzheimer’s Disease caregiver apps to enable them to provide thoughtful recommendations to implement their use in caregivers’ daily lives.

Stress in Family Caregivers of Children with Chronic Health Conditions: A Case–Control Study

Objectives: This study analyzed the stress experienced by family caregivers of children with special healthcare needs and identified associated factors. Methods: A case–control study was conducted with the “cases” being caregivers of children with chronic conditions and the “controls” being caregivers of healthy children. Recruitment was carried out via social media and complemented by snowball sampling. A sociodemographic questionnaire and the Perceived Stress Scale were applied, with four saliva samples collected in one day (at 8:00 am, 30 min later, and 4 and 12 h later). The Area Under the Curve for total daily cortisol production was calculated using the log-trapezoidal method. The Wilcoxon test and repeated-measures ANOVA were used for statistical analysis. Results: In total, 100 caregivers participated, with 50 in the “case” group and 50 in the “control” group. Significant differences in stress scores and salivary cortisol levels were observed between the groups, with the other variables constant. In both groups, cortisol levels followed a typical circadian pattern. Family income was associated with perceived stress. Caregiver age significantly explained perceived stress (p = 0.0098) and total cortisol production. Caregiver occupation also influenced cortisol results. Conclusions: Caregivers of children with chronic conditions showed higher perceived stress and lower cortisol production compared to those of healthy children. Family income, occupation, and caregiver age were associated with stress.

Caregiver burden, attachment and cognitive emotion among the family caregivers of severe mental illness patients

BackgroundSerious mental illness (SMI) is a debilitating medical condition that causes stress and challenges for the family caregivers (FCs) of affected patients, increasing their caregiver burden (CB). This situation can activate attachment styles (AS) and trigger negative emotions, further contributing to CB. Given that AS and cognitive-emotional regulation (CER) can affect the CB of FCs of patients with SMI, the aim of this study was to evaluate the relationship between CB with AS, and CER among the FCs.MethodsThis cross-sectional descriptive-correlational study was carried out in May–November 2022. Participants were 278 FCs of patients with SMI consecutively recruited from Roozbeh leading psychiatric hospital, Tehran, Iran. Data were collected using a patients’ demographic and clinical characteristics questionnaire, an FCs’ demographic characteristics questionnaire, the Attachment Style Questionnaire, the Cognitive Emotion Regulation Questionnaire, and the Burden Scale for Family Caregivers, and were analyzed using the SPSS software (v. 16.0).ResultsCB had significant inverse relationship with secure AS (r = − 0.262) and significant positive relationship with fearful AS (r = 0.194) and dismissive AS (r = 0.242) (P < 0.01). Moreover, CB had significant inverse relationship with adaptive CER strategies and significant positive relationship with maladaptive CER strategies (P < 0.001). Regression analysis also showed that CB had significant relationship with secure AS and catastrophizing, rumination, self-blame, and positive refocusing CER strategies (P < 0.05).ConclusionThis study concludes that AS and CER can impact CB. There is a negative relationship between secure AS and CB, as well as between adaptive CER strategies and CB. Conversely, there is a positive relationship between avoidant AS and increased CB, as well as between maladaptive CER strategies and CB. It is recommended to adopt strategies that promote the use of secure AS and adaptive CER among the FCs of patients with SMI.

E-Learning Modules for the Care of Caregivers of Older Filipinos

As the population ages, so does the challenge to the care of older people with mental health problems. Geriatric syndromes such as delirium, dementia, and depression are amenable to medical management. Beyond care of the patient, however, is care for the caregiver. Behavioral and Psychological symptoms of Dementia (BPSD) such as agitation, aggression, and delusions increase the risk of caregiver stress. This may lead to strain of individual carers and household members, increasing the patient’s risk for poor care, abuse, or institutionalization. Caregiver education and skills training help reduce the level of caregiver stress. These are usually delivered face to face during clinic visits or training modules by dementia care professionals. However, remote alternatives for education, learning and counselling became essential during the COVID-19 pandemic. E-workbooks and online learning modules on dementia, delirium, and depression written by professionals in the Philippines and Asia Pacific are available. An example is the Dementia Community Toolkit in English and its Filipino adaptation. The latter was developed by the Institute on Aging, National Institutes of Health, University of the Philippines Manila, with support from the Mental Health Unit of WHO WPRO. Patient support groups such as the Alzheimer’s Disease Association of the Philippines likewise developed online learning materials. These were and are still freely available via their websites and the webinars have been uploaded in internet and social media sites. The efficacy and acceptability of remote education to reduce informal caregiver burden, negative mood, and quality of life was published in a Cochrane meta-analysis. The authors analyzed experimental trials on information, training, or support compared to usual treatment, waitlist, or attention controls. Following several eligibility criteria, they identified 26 studies with 2367 participants in their review. Although most studies were of low quality and had uncertain risks of bias, there was small evidence that training plus support modules resulted in an improvement of caregiver knowledge. Training alone had no benefit on knowledge. Furthermore, there was no significant effect on patient institutionalization, caregiver burden depression, or quality of life. The article on E-Learning on knowledge on the 3Ds of Geriatric Psychiatry is a good start in understanding the capacity of well-educated Filipino caregivers to improve their knowledge on the subject. Beyond individual knowledge, E-learning modules have the capacity to guide families and communities in reducing ageism and improve patient care for older people with dementia, depression, and delirium. Further experimental studies are needed using locally developed modules. The bigger challenge is accessibility and acceptability of remote learning materials for the greater majority of informal caregivers with lower levels of education and poor access to online resources.

Changes in care provision to older parents during COVID-19 and the well-being of adult children: The moderating roles of the child-parent relationship and pandemic-related measures

Objective: The study addresses the associations between changes in care provision to older parents since the pandemic and worsened depression and anxiety in adult children. It also explores whether pandemic-related control measures and child-parent relationships moderated these associations. Background: Changes in informal care during the pandemic, such as increased or decreased caregiving frequency, may have affected caregivers’ psychological well-being. Limited research exists on how stressors and resources shape the well-being of adult children caregivers. Method: Data from 740 respondents in the first SHARE Corona Survey (SCS) who provided care for their parents during the pandemic were analyzed. Changes in depression and anxiety were assessed using data from SCS and pre-pandemic Wave. Logistic regression analyses were conducted, with added interactions between the moderators - pandemic measures and child-parent relationship characteristics - and changes in care frequency. Results: Increased caregiving frequency during the pandemic was associated with worsened depression. Stricter pandemic measures intensified this effect but also reduced the likelihood of anxiety for those who provided care less often. A higher quality of relationship with the mother in childhood was marginally associated with lower depression among those increasing caregiving but worsened depression for those decreasing it. Conclusion: To address post-pandemic caregiving challenges, efforts should focus on reducing caregiver stress and considering the enduring influence of early child-parent relationships.

Living between two cultures: stress in Korean American family caregivers of individuals with Alzheimer’s disease and related dementias

Objectives Korean-American primary family caregivers of individuals with Alzheimer’s disease and related dementias (ADRD) may face unique stress, attributable to the distinctive characteristics of Korean-Americans, including their immigration history, culture, and language. Using narrative inquiry, we explored caregiving experiences, focusing on stress, and identified factors contributing to stress among Korean-American family caregivers providing in-home care to individuals with ADRD. Method We conducted one-on-one, semi-structured interviews with 15 Korean-American family caregivers of individuals with ADRD. We analyzed the participants’ stress in the context of temporality (i.e. timelines of their caregiving), sociality (i.e. cultural and familiar contexts), and place (i.e. various life settings). Results The majority of participants were female (73%), Korean-born immigrants (93%), and had relatively high levels of education with an average of 16 years of education. We found that 1) caregivers’ stress continued but varied along the ADRD caregiving trajectory, 2) cultural expectations and relationship dynamics amplified stress levels, and 3) maintaining a Korean identity while living in the United States limited caregivers’ social connections. Conclusion Our findings highlight the nuances of stress among Korean-American ADRD family caregivers. Specific support needs should be addressed in the development of culturally tailored stress reduction interventions for this understudied population.

Impact of caregiving stressors on elder abuse—examining the mediating role of caregiver coping strategies

Objectives Based on the Caregiving Stress Theory and Cognitive Theory of Stress and Coping, this study examined whether increase in caregiving stressors had an impact on subsequent increase in different forms of elder abuse. Additionally, this study evaluated how these relationships were influenced by caregiver (CG) coping strategies. Method A group of 800 Chinese primary family CGs and their care recipients (CRs) with mild cognitive impairment or mild-to-moderate dementia were analyzed. Participatory dyads were assessed and followed for 2 years. Structural Equation Models were used to test the associations among caregiving stressors, CG coping strategies, and elder abuse. Results Increase in caregiving stressors (ie CR decreased cognitive function, neuropsychiatric symptoms, and functional impairment) significantly increased the level of subsequent physical abuse, psychological abuse, and neglect. In addition, the associations between caregiving stressors and different forms of elder abuse as stated above was mediated by CG dysfunctional coping strategies. Conclusion This study highlights the varying impact of caregiving stressors on different types of elder abuse and emphasizes the role of CG coping strategies in mediating these relationships. The findings provide valuable insights for the development of intervention protocols targeting both caregiving stressors and CG coping strategies to prevent elder abuse.

A modified transactional model of stress and coping on depressive symptoms among informal caregivers of persons with dementia

Informal caregivers are crucial to the care of persons with dementia (PWD), but their role is often reported as challenging. This study aims to examine caregiver stress and depressive symptoms among informal caregivers of PWD using a modified transactional stress and coping model. Path analysis was conducted among a sample of informal caregivers of PWD in Singapore (n = 281) using information on functional dependence and memory and behavioral problems of PWD, and self-reported measurements on caregivers’ knowledge of dementia, perceived positive aspects of caregiving, social support, coping patterns, caregiving self-efficacy, caregiving burden and depressive symptoms. The initial model reflecting our assumptions for the transactional stress and coping model showed a poor fit (model 1 - CFI = 0.858, TLI = 0.665, RMSEA = 0.118). Logical modifications were made until sufficient model fit was achieved (model 2 - CFI = 0.987, TLI = 0.955, RMSEA = 0.043). We then removed the insignificant paths in model 2 and obtained our final model (model 3 - CFI = 0.990, TLI = 0.974, RMSEA = 0.033). The final model supported our hypotheses, with some adjustments. This study advances our understanding of caregiver distress by modifying the transactional stress and coping model, including (1) the key role of caregiver self-efficacy in the primary appraisal process, (2) the dynamic assessment of coping resources across all stages of the model, and (3) the importance of coping patterns. Future studies could explore the generalizability of these findings.

62 Outcomes from a randomized controlled trial of a brief virtual group intervention for adolescents with mild to moderate suicidal ideation and their caregivers: The BRAVA study

Abstract Background Building Resilience and Attachment in Vulnerable Adolescents (BRAVA) is a brief virtual group intervention designed for adolescents with mild to moderate suicidal ideation (SI) and their caregivers. The goal of BRAVA is to reduce SI in adolescents and increase family connection. The intervention consists of six independent, 90 minute modules that are delivered in a group setting on a weekly basis. Independent modules allow for rolling admission thereby reducing wait time to start the intervention. The modules include components of Dialectical Behaviour Therapy. Attachment Based Family Therapy, Cognitive Behavioral Therapy, Collaborative Problem Solving and psychoeducation. Adolescents and their parents attend separate groups. Adolescents focus on emotional regulation, coping skills, managing crisis situations and caregivers focus on connecting with their teen, validation and crisis management Objectives This randomized controlled trial (RCT) assessed the efficacy of BRAVA in reducing symptoms of SI, depression and anxiety in adolescents, and improving life stress and competency in caregivers. Design/Methods Ninety-nine eligible youth (13-17.5 years) presenting with mild to moderate SI (rated 1 on the suicide item of HEADS-ED MH screening tool) and their caregivers were recruited from hospital and community services. Families were randomized to BRAVA (n=50) or the control group (n=49). The control group intervention consisted of weekly text messages and the opportunity to join the BRAVA group post-exit assessment). Outcome measures were administered at intake and exit for adolescents (Suicidal Ideation Questionnaire-Junior, SIQ-JR; Revised Children’s Anxiety and Depression Scale, RCADS) and caregivers (Perceived Stress Scale, PSS; Parent Sense of Competency Scale, PSOC). Outcomes were analyzed using repeated measures of multivariable analysis of variance (MANOVA). Results Preliminary analyses showed no significant differences between groups at intake for any demographic or clinical variables. Most adolescents and caregivers completed their exit assessment (nBRAVA=37; nControl=39). Adolescents and caregivers attended a median of six and five groups, respectively. Comparing to the control group, BRAVA was superior in reducing SI (p = 0.05) and depression (p = 0.005) in adolescents and caregiver life stress (p = 0.026). Preliminary MANOVA of adolescent outcomes were significant for time [p &amp;lt;0.01, Effect size (ES) = 0.98] and between groups (p = 0.03, ES = 0.11). Caregiver outcomes were significant for time (p=0.051, ES=0.70). Conclusion This study demonstrates that a brief virtual group intervention can have a significant impact on adolescent SI and depression compared to an enhanced treatment as usual control group. In addition, BRAVA can reduce caregiver perceived stress, helping them view their lives as less unpredictable, uncontrollable and overloaded.

Positive impact of an inpatient early childhood literacy programme on literacy practices and family experience in a paediatric heart centre.

CHD predisposes children to neurodevelopmental delays. Frequent, prolonged hospitalisations during infancy prevent children with heart disease from participating in recommended language and cognitive development programmes, such as outpatient early childhood literacy programmes, and contribute to caregiver stress, a risk factor for adverse developmental outcomes. This study aims to describe the implementation of a single-centre inpatient early childhood literacy programme for hospitalised infants with heart disease and assess its impact on reading practices and patient-family hospital experience. Admitted infants ≤1 year old receive books, a calendar to track reading frequency, and reading guidance at regular intervals. Voluntary feedback is solicited from caregivers using an anonymous, QR-code survey on books. A prospective survey also assessed programme impact on hospital experience. From February 2021 to November 2023, the Books@Heart programme provided 1,293 books to families of 840 infants, of whom 110 voluntarily submitted feedback. Caregivers reported a significant improvement in access to books (p < 0.001) and increased reading frequency after learning about Books@Heart (p = 0.003), with the proportion reading to their child daily increasing from 27% to 62%. Among 40 prospective survey responses, caregivers reported feeling a sense of personal fulfillment (60%), self-confidence (30%), connection (98%), and personal well-being (40%) while reading to their child. An inpatient early childhood literacy programme is a well-received intervention for infants with heart disease that promotes development, improves book access, increases reading exposure, and engages families. Further studies are needed to assess its impact on sustained reading practices and neurodevelopmental outcomes.

Prevalence and Predictors of Stress Among Caregivers of Children with Developmental Disorders.

Medical care advances pose challenges with rising caregiving costs and fewer informal caregivers, shifting healthcare responsibilities to families. Healthcare systems adapt to technological changes, stressing person-centered care but lack support for caregivers. Addressing parental stress is crucial, given its impact on both parent and child well-being, highlighting the necessity for customized support. The study aimed to evaluate caregivers' perceived stress and its connection with socio-demographic factors and children's characteristics. Conducted at a Rehabiltation Institute's Psychology Outpatient Department, 200 mothers were enrolled using non-probability consecutive sampling. Ethical clearance was obtained, and demographic data were collected. The mean perceived stress score (PSS-10) was 31.94, indicating a positive correlation between stress and socio-demographic and disability-related variables. Significant differences in stress levels were observed between joint and nuclear family caregivers, p < .01, and those with daughters versus sons with disabilities < 0.001. Pearson's correlation analysis revealed positive correlations between perceived stress and caregiver p = < 0.001 and child age p = < 0.001, number of children p = < 0.001, and time since diagnosis p = < 0.001, with negative correlations with caregiver education p = < .001and income p = < 0.001. Multiple linear regression indicated that caregiver and child age, time since diagnosis, and the number of children positively predicted while income and education of the caregiver negatively predicted perceived stress. No significant association was found between other variables like family volunteers' education, disability type, and caregiver stress. Caregivers exhibited high perceived stress levels, highlighting the reciprocal relationship between child characteristics and parental stress, emphasizing the need for comprehensive family interventions.

Effect of a single-session mindfulness-based intervention for reducing stress in family caregivers of people with dementia: study protocol for a randomized controlled trial

BackgroundCaregiver 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/DesignThe 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.DiscussionThe 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 registrationClinicalTrials.gov, NCT06346223. Registered on April 3, 2024.

Does Social Support Alleviate the Caregiving Burden of Adult Children? Evidence from Chinese Long-Term Care Insurance Pilot Program

ABSTRACT In China, and many other developed nations, public long-term care insurance (LTCI) is a commonly adopted approach to meet long-term care needs, but its impact on the burden of family caregivers remains uncertain. This study investigated whether a parent having LTCI alleviates the caregiver burden for the adult child caregiver. Data derived from the 2011, 2013, and 2018 China Health and Retirement Longitudinal Study (N = 4595 adult child caregivers). Guided by the stress-appraisal model, Difference-in-Difference (DID) methods were used to investigate the spillover effects of LTCI on caregiver stressors and burden. The results show that having public LTCI in place in a location is associated with reduced caregiver burden among adult child caregivers through its effects on secondary stressors (wealth, health, and sleep problems) and hours of caregiving. Findings suggest that the LTCI is an effective form of social support for aiding family caregivers and alleviating their burden.

Exploring the Association between Parenting Stress and a Child’s Exposure to Positive Childhood Experiences (PCEs)

AbstractHigh levels of parenting stress, defined as a caregiver or parent feeling stress or aggravation from parenting, has been previously shown to be associated with an increased likelihood of neglect, child maltreatment, and household dysfunction: adverse childhood experiences (ACEs). Despite the potential mitigation of positive childhood experiences (PCEs) on ACEs, prior studies on the increased likelihood of a child experiencing ACEs due to parenting stress have left a critical question unanswered: whether high parenting stress may decrease a child’s likelihood of experiencing PCEs. We analyzed the 2019–2020 National Survey of Children’s Health to examine whether higher levels of parenting stress are associated with the lower likelihood of experiencing PCEs among children. Children with caregivers experiencing high parenting stress had a lower odds of experiencing many types of PCEs, including after school activities (aOR 0.48; 95% CI 0.38–0.57), community volunteer (aOR 0.63; 95% CI 0.52–0.77), and guiding mentor (aOR 0.65; 95% CI 0.50–0.85). Lowering parenting stress through economic supports and parenting programs/interventions could increase the likelihood that a child experiences PCEs.

Preventing risk of placement breakdown and hospital admission in the management of distressed behaviour in dementia care: A qualitative case study with family and care-home staff.

Objectives: Behaviours such as hitting-out and declining personal care are commonly exhibited by people living with dementia and are associated with care-giver stress and anxiety and care home placement breakdowns. Traditionally, pharmacological approaches have been used to manage behaviour; however, research indicates limited effectiveness. National guidelines recommend use of non-pharmacological interventions as first line treatment for distress, but further research is required to elucidate the components that lead to improved care for people living with dementia. This study aims to explore what works, examining case studies in which a non-pharmacological clinical intervention, the Newcastle Model, was used to understand and manage distressed behaviour in dementia care within care home settings. Method: A qualitative case study design was used. Three cases were selected from the Edinburgh Behaviour Support Service for their success in preventing care home placement breakdown during a distressed behaviour intervention in NHS Scotland. Family members and staff involved in the interventions within these cases were interviewed (N = 6). Thematic analysis was used to analyse data. Findings: All participants reported positive outcomes from the intervention. Three key themes were identified, each with subthemes. Participants described a supportive, non-judgmental environment which allowed them to integrate knowledge about dementia and tailor interventions to the specific needs of the individual living with dementia. There was also a sense of family and staff coming together to unite with shared goals. A preliminary model of all of themes and their interactions is presented. Conclusion: The study supports use of biopsychosocial, formulation-led approaches in the understanding and treatment of complex behavioural presentations in community care settings. It suggests that clinicians should endeavour to facilitate safe and open environments for care home staff and family members, in order to promote attribution change and person-centered care, and to help mediate differences and conflict between staff and family members.

Efficacy of a Telephone-Intervention on Caregiving Burden and Mental Health among Family Caregivers of Persons with Dementia in Malaysia: A Randomized Controlled Trial.

Identifying effective and accessible interventions for family caregivers of persons with dementia (PWD) is crucial as the prevalence of dementia increases in Asia. This study investigated the efficacy of a telephone-intervention on the reduction in caregiver burden, as well as depressive and anxiety symptoms among family caregivers (FCs) of PWD in Malaysia. A single-blinded randomized controlled trial was carried out with 121 FCs of PWD selected from memory or psychiatry clinics in three tertiary hospitals in Malaysia, who were randomly allocated into the intervention or control group. The intervention group received the psychoeducational intervention delivered by healthcare staff via telephone for 10 sessions over 12 weeks. The outcome of the intervention was measured by the Malay version of the Zarit Burden Interview and the Hospital Anxiety and Depression Scale at baseline and post-intervention. An intention to treat analysis shows that caregiver burden, anxiety symptoms, and psychological distress among FCs in the intervention group decreased by 7.57 units (p < 0.001), 2.46 units (p < 0.001), and 2.98 units (p = 0.011), respectively, at post-intervention, compared to the differences from baseline to post-intervention in the control group. Policies aimed at integrating the telephone-intervention into memory/psychiatry clinics in Malaysia may help FCs of PWD to reduce their caregiver burden and stress while caring for a family member with dementia.

Intervention for the Management of Neuropsychiatric Symptoms to Reduce Caregiver Stress: Protocol for the Mindful and Self-Compassion Care Intervention for Caregivers of Persons Living With Dementia.

Stress related to Alzheimer disease and related dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress. In this study, we aimed to describe the development of the Mindful and Self-Compassionate Care (MASC) program, the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL) study. Using the National Institutes of Health (NIH) stage model, we describe 3 phases of work encompassing NIH Stages 1A and 1B. In phase 1, we conducted 5 focus groups (N=28) of stressed individuals caring for persons with ADRD and challenging behaviors. Rapid data analysis informed the development of a 6-week online intervention. Phase 2 (NIH stage 1A) includes an open pilot (N>10) with optional exit interviews. Phase 3 (NIH stage 1B) is a feasibility randomized controlled trial of the intervention versus the Health Education Program control. Primary outcomes focus on feasibility with secondary outcomes encompassing acceptability, credibility, fidelity, and signals of preliminary efficacy. Phase 1 follows traditional recommendations for qualitative analyses (at the point of thematic saturation) which was achieved after 5 focus groups (N=28). For the phase 2 open pilot, up to 12 participants will be recruited. For the phase 3 feasibility study, recruitment of 80 caregivers will allow the assessment of feasibility benchmarks. Data for phase 1 included 5 focus groups. In phases 2 and 3, data collection will occur through REDCap (Research Electronic Data Capture; Vanderbilt University) surveys and an optional qualitative exit interview. Analyses will include hybrid inductive-deductive analyses for qualitative data and assessment of changes in our intervention targets and outcomes using t tests and correlation analyses. In phase 1, caregivers reported interest in a brief, online stress management program. Participants held misconceptions about mindfulness and self-compassion, but after detailed explanation thoughts, these skills could be helpful when directly linked to implementation during caregiving routines. Phases 2 and 3 will be completed by the end of 2025. We describe the protocol for the Supporting Our Caregivers in ADRD Learning study, as well as the development and feasibility testing of the Mindful and Self-Compassionate Care intervention. Future work will include a fully powered efficacy-effectiveness randomized controlled trial. ClinicalTrials NCT05847153; https://clinicaltrials.gov/study/NCT05847153; and ClinicalTrials.gov NCT06276023; https://clinicaltrials.gov/study/NCT06276023. DERR1-10.2196/58356.

Caregivers on point: a randomized treatment–control prevention trial for foster and kinship caregivers to reduce behavior challenges among children in foster care

BackgroundChildren in foster care who are newly placed with licensed or kinship caregivers are often vulnerable to increased behavior problems associated with trauma and social disruptions. When those issues are not addressed, children are susceptible to placement disruptions that exacerbate behavior problems. Few preventive interventions are available for foster and kinship caregivers, and none are designed to be delivered at the time of a child’s placement into the home. This study aims to examine the impact of the Chicago Parent Program adapted and customized for foster and kinship caregivers (CPP-FC), locally branded as Caregivers on Point, on caregiver stress, parenting confidence and strategies, children’s behaviors, and placement stability.MethodsCaregivers (N = 300) are being recruited from a specialized foster care clinic that sees children and caregivers within five business days of a new placement. Upon completing baseline surveys and behavioral observation, caregiver-child dyads are randomized to receive CPP-FC (n = 150) or usual care (n = 150). Those in the treatment condition will complete 11 weekly sessions addressing child behavior management and caregiving approaches. A booster session will occur one month after the weekly sessions conclude. A mid-point assessment and behavioral observation will be collected four months after the baseline assessment for all participants, coinciding with the completion of the CPP-FC programming. At 6 months post-baseline, an end-of-study assessment will be collected. Administrative data will be extracted from the child welfare record to determine placement stability for the 12 months following enrolment. The primary outcome of interest is child behavior, indicated by changes in caregiver reports and objective ratings of behavior from observations, where raters are blinded to the treatment arm and timing of data collection. Secondary outcomes include placement stability and changes in caregiver stress and confidence in managing children’s behavior.DiscussionIf found to be effective, CPP-FC would be helpful for families involved with child welfare. It could be delivered by child welfare agencies, licensing and kinship navigator agencies, and foster care clinics and may be eligible for government reimbursement as a preventive intervention for children in foster care.Trial registrationThis study was prospectively registered with ClinicalTrials.gov, NCT06170047.