Psychosocial Correlates of the Experience of Caregiving Among Caregivers of Patients With Schizophrenia.

BACKGROUND: Family caregivers provide essential support to their loved ones with schizophrenia with profound outcomes for themselves. The caregiver burden fails to consider the entire caregiving experience, which also incorporates positive aspects of caring. Many potentially significant variables are associated with this. AIM: To examine the correlates of the experience of caregiving in caregivers of patients with schizophrenia. The specific objectives were to examine the socio-demographic variables of the patients and caregivers, clinical variables of the patient, caregivers' knowledge of illness, caregivers' perspectives of family functioning, caregiver coping, their social support, psychological distress, quality of life, and their spirituality, religiosity and personal beliefs and the associations of these variables with the caregivers' experience of caregiving. METHODS: This cross-sectional observational study was conducted between August 2018 and January 2021 at All India Institute of Medical Sciences, New Delhi, India. One hundred and fifty-eight dyads of patients with schizophrenia and their family caregivers were recruited using purposive sampling. Experience of Caregiving Inventory was used to evaluate the caregiving experience. The caregivers were also assessed on socio-demographics, knowledge of illness, family functioning, coping, social support, general mental health, quality of life, and spiritual, religious, and personal beliefs. Patient socio-demographics and clinical variables were also assessed. RESULTS: A negative experience of caregiving was reported by caregivers of patients who had higher positive or negative symptoms of schizophrenia. Impaired Communication, Roles, Affective Responsiveness, Affective Involvement, and General Functioning aspects of family functioning were associated with a negative experience of caregiving. Denial/blame and seeking social support as coping were also associated with a negative experience of caregiving. A negative experience of caregiving was significantly positively correlated with greater psychological distress and poorer quality of life. Greater inner peace was associated with a less negative experience of caregiving. Spiritual strength was associated with a more positive experience of caregiving. Knowledge of mental illness and caregiver social support were not significantly associated with the experience of caregiving. CONCLUSION: Experience of caregiving is a relevant construct, the understanding of which can help inform caregiver-directed interventions in the future. Specifically, family-based interventions, which include ameliorating patient symptomatology, improving the family environment, strengthening caregivers' coping strategies, attending to caregiver distress, and encouraging spirituality among caregivers, may lead to a less negative and more positive experience of caregiving; and a better quality of life for caregivers.

Demographics, Symptoms, Psychotropic Use, and Caregiver Distress in Patients With Early vs Late Onset Dementia.

BACKGROUND: Understanding experiences and challenges faced by persons living with Early-Onset Dementia (EOD) compared to individuals diagnosed with Late-Onset Dementia (LOD) is important for the development of targeted interventions. OBJECTIVE: Describe differences in sociodemographic, neuropsychiatric behavioral symptoms, caregiver characteristics, and psychotropic use. DESIGN, SETTING, PARTICIPANTS: Cross-sectional, retrospective study including 908 UCLA Alzheimer's Dementia Care Program participants (177 with EOD and 731 with LOD). MEASUREMENTS: Onset of dementia was determined using age at program enrollment, with EOD defined as age <65 years and LOD defined as age >80 years. Sociodemographic and clinical characteristics were measured once at enrollment. Behavioral symptoms were measured using the Neuropsychiatric Inventory Questionnaire (NPI-Q) severity score and caregiver distress was measured using the NPI-Q distress score. Medications included antipsychotic, antidepressant, benzodiazepines and other hypnotics, antiepileptics, and dementia medications. RESULTS: EOD compared to LOD participants were more likely men, college graduates, married, live alone, and have fewer comorbidities. EOD caregivers were more often spouses (56% vs 26%, p <0.01), whereas LOD caregivers were more often children (57% vs 10%, p <0.01). EOD was associated with lower odds of being above the median (worse) NPI-Q severity (adjusted odds ratio [aOR], 0.58; 95% CI 0.35-0.96) and NPI-Q distress scores (aOR, 0.53; 95% CI 0.31-0.88). Psychotropic use did not differ between groups though symptoms were greater for LOD compared to EOD. CONCLUSION: Persons with EOD compared to LOD had sociodemographic differences, less health conditions, and fewer neuropsychiatric symptoms. Future policies could prioritize counseling for EOD patients and families, along with programs to support spousal caregivers of persons with EOD.

Using Exploratory Structural Equation Modeling to Examine Caregiver Distress and Its Contributors.

OBJECTIVES: To develop and test the direct and indirect associations between caregiver distress and its many contributing factors and covariates. DESIGN: Analysis using data from a national, cross-sectional survey of Canadian caregivers. SETTING AND PARTICIPANTS: A total of 6502 respondents of the 2012 General Social Survey-Caregiving and Care-receiving who self-identified as a caregiver. METHODS: We used exploratory structural equation modeling to achieve our aims. Based on literature review, we hypothesized a structural model of 5 caregiving factors that contribute to distress: caregiving burden, caregiving network and support, disruptions of family and social life, positive emotional experiences, and caregiving history. Survey items hypothesized to measure each latent factor were modeled using exploratory factor analysis (EFA). After establishing a well-fit EFA model, structural equation modeling was performed to examine the relationships between caregiving factors and caregiver distress while controlling for covariates such as caregiver's and care-recipient's sociodemographic characteristics and kinship. RESULTS: EFA established a well-fit model that represented caregiver distress and its 5 contributing factors as hypothesized. Although all 5 had significant effects on caregiver distress, disruptions of family and social life contributed the most (ß = 0.462), almost 3 times that of caregiving burden (ß = 0.162). Positive emotional experiences also substantially reduced distress (ß = -0.310). CONCLUSIONS AND IMPLICATIONS: Understanding the multifaceted nature of caregiver distress is crucial for developing effective strategies to support caregivers. In addition to reducing caregiving burden, having flexible resources and policies to minimize disruptions to caregivers' families (eg, flexible work policies; family-oriented education, training, and counseling) and enhance the positive aspects of caregiving may more effectively reduce distress.

Caregiver Thrive, Learn, & Connect: Testing the Efficacy of an Online Psychoeducational Program for Family Caregivers.

OBJECTIVES: Research reports that providing care to a relative or friend with a chronic health condition or significant neurocognitive disorders, such as dementia is a demanding job. Caregiving often leads to higher risk for adverse mental health outcomes. In this study, we examine the short-term efficacy of the CaregiverTLC online psychoeducational program to caregivers of adults with chronic health or significant memory troubles. METHOD: Using pre-post data from the CaregiverTLC randomized controlled trial (n = 81) we examined differences between the intervention and control conditions on caregivers' psychosocial outcomes for depressive symptoms, self-efficacy, burden, anxiety, and caregiver gains. RESULTS: Data analyses indicated significant decrease in self-reported depressive symptoms, burden, anxiety, and significant increases in self-efficacy and caregiver gains for caregivers in the active intervention compared to those in the control condition. CONCLUSIONS: These results suggest that regardless of whether caregivers care for a person with a chronic illness or significant neurocognitive disorder, they can benefit from participation in this online psychoeducational program. CLINICAL IMPLICATIONS: The CaregiverTLC program may be an effective method to teach skills to reduce depression, burden, and anxiety, and improve self-efficacy and personal gains among caregivers of older adults with chronic illnesses.

Comparing clinico-demographics and neuropsychiatric symptoms for immigrant and non-immigrant aged care residents living with dementia: a retrospective cross-sectional study from an Australian dementia-specific support service.

BACKGROUND: Neuropsychiatric symptoms of dementia such as agitation and aggression are common in people living with dementia. The presentation of neuropsychiatric symptoms is influenced by the cultural background of people living with dementia. Further, identifying factors contributing to neuropsychiatric symptoms may be complicated if people living with dementia are immigrants or from non-English-speaking backgrounds. Most of what is known about differences in neuropsychiatric symptoms between racial and ethnic groups living with dementia come from community-based samples. This study investigated differences in clinico-demographics and neuropsychiatric symptoms between immigrants and non-immigrants living with dementia in residential aged care homes who were referred to two Dementia Support Australia programs. METHODS: This was a retrospective observational cross-sectional study from 2018 to 2022 using data extracted from the Dementia Support Australia database. Immigrant status was identified by documented country of birth. We conducted exploratory subgroup analyses for English-speaking or non-English-speaking immigrants in comparison to non-immigrants. Neuropsychiatric Inventory and PainChek® were used to assess neuropsychiatric symptoms of dementia and pain, respectively. RESULTS: Of the 23,889 referrals, 36% were immigrants living with dementia. Immigrants were 0.8 years older than non-immigrants on average. Immigrants had a slightly higher prevalence of mixed dementia (9.5%) than non-immigrants (8.2%). Overall, the groups had no difference in the severity of neuropsychiatric symptoms and associated caregiver distress. However, there was a significant difference in the total number of neuropsychiatric inventory domains (Cohen's d = -0.06 [-0.09, - 0.02], p <.001) between non-English-speaking immigrants and non-immigrants. Immigrants were more likely to present with agitation/aggression, while non-immigrants were more likely to present with hallucinations. Factors contributing to neuropsychiatric symptoms were common between the groups, with language barriers and cultural considerations frequently endorsed for immigrants. CONCLUSION: This study reveals a mixed picture of neuropsychiatric symptoms between immigrants and non-immigrants. However, due to the exploratory nature of the hypotheses, our findings need to be replicated in future studies to confirm any conclusions. There is a need for increased awareness on the impact of culture and language on neuropsychiatric symptoms for people receiving residential care. Future studies investigating neuropsychiatric symptoms in different immigrant groups will help increase our understanding of neuropsychiatric symptoms for all people.

Developing a psychoeducational programme for caregivers of people with intellectual disability.

Background: In the Western Cape, South Africa, a significant number of individuals with intellectual disabilities are cared for by caregivers who receive little or no compensation, education or support. Despite the unique challenges faced by these caregivers, no psychoeducational programmes have been implemented for this particular population. Objectives: The study aimed to examine the factors contributing to caregiver distress and develop a solution in the form of a psychoeducational programme for caregivers. Methods: A mixed-methods research approach was employed. The qualitative phase involved exploratory research to gather fundamental information and gain new insights into caregiver distress. The quantitative phase utilised a 'one-group pre-test, post-test design' with a Likert-scale questionnaire to enable meaningful interpretations and comparisons of the psychoeducational programme's impact and value. The paired t-test was employed to determine significant differences between pre-test and post-test results. Results: The statistical findings demonstrated a significant increase in knowledge, with 99% of respondents indicating a positive impact in reducing caregiver distress and 85% feeling better equipped to care for individuals with intellectual disabilities. Conclusion: The psychoeducational programme developed in this study had a positive effect on reducing caregiver distress. Contribution: This knowledge provides valuable insights for healthcare professionals in designing relevant intervention programmes, offering support and providing resources not only for individuals with intellectual disabilities but also for their caregivers.

A mixed-methods study to inform development of a caregiver-specific problem list for cancer distress screening.

OBJECTIVE: Oncology guidelines for distress management recommend use of the single-item distress thermometer (DT) and accompanying Problem List (PL) to identify patients with high distress levels and their potential sources of distress. However, oncology practices have yet to establish standardized protocols to screen and triage caregivers with high distress levels. With an eye toward integrating caregiver-centered support services into cancer care, this mixed-methods study sought to assess caregiver distress and challenges that may contribute to their distress. METHODS: Nineteen caregivers of metastatic breast cancer patients (60% female, 47% ethnic/racial minority) completed an interview and a survey comprised of the DT, the original 39-item PL, and five additional caregiver-specific PL items. RESULTS: Caregivers reported moderate distress levels and more than half exceeded the National Comprehensive Cancer Network (NCCN) cut-off, denoting significant distress. There was no association between caregiver distress and the number of items endorsed on the original PL. Qualitative analysis identified nine problem domains as areas of caregiver unmet need needs (i.e., practical challenges, caregiving responsibilities, social/relationship issues, caregiver and patient emotional well-being, caregiver and patient physical well-being, spiritual well-being, and communication). Two of the problem domains (caregiving responsibilities and communication) were not captured in any way by the original PL. CONCLUSION: With further research and development, the identified domains could serve as the basis for a caregiver-specific PL to facilitate triage and referral when incorporated as part of routine distress screening.

Burden in caregivers of primary care patients with dementia: influence of neuropsychiatric symptoms according to disease stage (NeDEM project).

BACKGROUND: Caregiver burden is related to personal factors and patient characteristics and is greater when neuropsychiatric symptoms (NPSs) are present. OBJECTIVE: Estimate the prevalence of burden among caregivers of dementia patients and its association with NPSs and identify NPSs causing greater caregiver distress according to dementia stage. METHODS: A cross-sectional observational study in caregivers of noninstitutionalized dementia patients was conducted. Caregiver variables were sociodemographic, time of care, NPS-associated distress based on the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D) and burden based on the Zarit Burden Interview (ZBI). Patient variables were time since disease onset, Global Deterioration Scale (GDS) disease stage, functional assessment and NPS presence and intensity according to the Neuropsychiatric Inventory (NPI). The mean ZBI score, prevalence of burden and NPI-D score with 95% CIs at each dementia stage were estimated. Factors associated with burden were identified by multivariate analysis. RESULTS: Of the 125 caregivers included, 77.6% were women, with a mean age of 60.7 (± 14.3) years; 78.4% (95%CI: 71.0; 86.0) experienced burden. The mean ZBI score was 12.3 (95%CI: 11.6; 12.9) and increased according to NPS number (p = 0.042). The NPSs causing the most burden were disinhibition (93.5%), irritability (87.3%) and agitation (86.1%). Agitation, apathy, and sleep disorders were the NPSs generating the greatest overall caregiver distress; depression (max NPI-D 1.9), hyperactivity (max NPI-D 2.1), and psychosis symptoms (max NPI-D 1.6) generated the greatest distress at stage GDS 3, stages GDS 4-5, and stages GDS 6-7, respectively. The NPI score (OR = 1.0, 95%CI 1.0; 1.1), intensity of irritability (OR = 1.2, 95%CI 1.0; 1.6), disinhibition (OR = 2.6, 95%CI 1.1; 5.8) and hyperactivity subsyndrome (OR = 1.1, 95%CI 1.0; 1.2) were associated with caregiver burden. Other associated factors were female gender (OR = 6.0, 95%CI 1.6; 22.8), ≥ 8 h daily care (OR = 5.6, 95%CI 1.4; 22.8), working outside the home (OR = 7.6, 95%CI 1.8; 31.8), living with the patient (OR = 4.5, 95%CI 1.1; 19.6), kinship (OR = 5.4, 95%CI 1.0; 28.2) and lower patient education (OR = 8.3, 95%CI 2.3; 30.3). CONCLUSIONS: The burden on caregivers of dementia patients is high and associated with NPS presence and intensity. Disinhibition and irritability caused the highest burden. Depression, hyperactivity and psychosis produce more distress in mild, mild-moderate and severe dementia, respectively.

Mitigating Caregiver Distress in South Western Ontario: Perspectives on Role, Community, and Care.

The former South West Local Health Integration Network (SW LHIN) of Ontario, which is in a predominantly rural region, regularly reports the lowest rates of caregiver distress in the province. Caregivers from rural communities regularly face challenges related to the access, applicability, and availability of supports and services, This qualitative case study describes perspectives of caregiving from the region, and explores how role construction and expectations of caregivers might both mitigate distress and influence service support use. Thematic analysis identified five themes: anticipated care, gendered caring, service support assumptions, confidence in community, and the "line in the sand": care decisions for evolving needs. Using the lens of caregiver identity theory, the findings suggest that these caregivers conceptualize identity as an extension of their primary role, to include caregiving obligations and responsibilities. We also noted a steadfast confidence in community and perceived service support assumptions across the region, with no notable rural-urban divide.

The role of maladaptive personality in behavioural and psychological symptoms in dementia.

BACKGROUND: Although research demonstrated a significant link between premorbid normative personality traits and the severity of behavioural and psychological symptoms in dementia (BPSD) and associated emotional distress of the caregiver, little is known about the relationship of BPSD symptoms and associated distress with maladaptive traits. METHOD: Informants (N = 182) of Dutch nursing home residents with dementia aged 65+, completed the Neuropsychiatric Inventory Questionnaire to assess the severity of BPSD and associated emotional distress. Premorbid maladaptive personality traits were evaluated using informant versions of a brief version of the Personality Inventory for Diagnostic and Statistical manual of Mental Disorders-5 (PID-5-BF), and two age-specific personality measures, the Informant Personality Questionnaire (HAP), and Gerontological Personality disorder Scale. Relationships between premorbid personality and BPSD were investigated with correlational and ordinal regression analyses. RESULTS: BPSD severity and distress were associated with medium sized correlations to Negative Affectivity, Antagonism and indications of personality disorder presence. The emotional distress also correlated with a medium effect with Detachment. Higher scores on maladaptive personality traits increased the odds of higher BPSD severity and distress. CONCLUSION: Results found with age-specific personality measures were in line with results found with other measures of (mal)adaptive traits. Several maladaptive personality traits had a significant relationship with the BPSD severity and associated emotional distress. We therefore encourage to implement personality assessment within BPSD treatment strategies. This way care becomes more person-focused and more tailored to the specific needs of patients and caregivers.

Effect of the COVID-19 Pandemic on the Self-Perceived Change of Caregivers' Burden in Providing Care for People With Dementia.

Objectives: To explore how the COVID-19 pandemic affects caregiver (CG) burden, the quality of care provided to people with dementia (PwD) and their perceived changes between before and during the pandemic. Methods: A cross-sectional study surveyed primary CGs about burden and self-perceived change in multidimensional domains and compared these before and during the pandemic. Results: About 135 primary CGs of PwD were enrolled at Siriraj Hospital's Geriatric Clinic in Thailand and assessed using various online platforms. About 13.8% of CGs had a "mild to moderate" burden. The NPI-Q score and level of functional capacity of the PwD declined during the COVID-19 pandemic (p-value .001 and .001, respectively). The CG-associated factors that related to a higher CG burden were younger age (mean age of 54.2 years old), female (76.3%), and high educational level (80.7%). Conflict between CG and PwD was associated with an increase in CG burden (p-value .004; 95% CI [1.19, 6.12]). Regarding the COVID-19-related factors, there was no association between CG burden and the PwD's characteristics or COVID-19-related concerns. Conclusions: The COVID-19 pandemic was associated with a higher CG burden. Identifying the related factors in an unusual situation may help reduce the CG burden and improve the care of PwD.

Systematic review and meta-analysis of randomized controlled trials of interventions addressing caregiver distress and burden among cancer caregivers.

Objective: Informal caregivers (ICs) are vital to supportive cancer care and assisting cancer patients, but this caregiving burden is associated with significant distress. While addressing caregiving, it is important to explore if the caregivers are receiving care they need. Evaluating interventions that address burden and distress is integral to targeting ICs needs. This study evaluated interventions addressing IC burden and distress. Methods: Randomized control trials (RCT) assessing interventions for IC burden and distress and exploring supportive care as an adjunct to the intervention were included. Six electronic databases were searched in accordance with the Preferred Reporting Items for Systematic reviews and Meta-analyses guidelines through October 2021. Effect sizes were estimated, and risk of bias was assessed. Results: Of 678 studies, 11 were included. Most ICs were spouses, females, and white. Interventions included educational programs, cognitive behavioral treatment, and a telephone support program. Five studies utilized behavioral theories and seven included supportive care. Pooled results showed no significant effect on reducing caregiver distress (ES, -0.26, p<0.001). Conclusions: Caring for the caregiver with interventions for reducing burden and distress are not efficacious. Innovative, well-designed, more pragmatic RCTs are needed. Innovation: This study exclusively focused on interventions and supportive care needs for reducing distress and burden among cancer ICs.

'Online therapy' to reduce caregiver's distress and to stimulate post-severe acquired brain injury motor and cognitive recovery: A Sicilian hospital experience in the COVID era.

INTRODUCTION: Severe acquired brain injury(SABI) often results in the deterioration of physical, cognitive and emotional functions in the patient and a significant caregiver's distress syndrome, which is now amplified by the social isolation, depression and financial difficulties related to the COVID-19 pandemic. The use of web-based online-therapy has been shown to be useful to overcome caregiver's distress syndrome and further stimulate cognitive-motor recovery of SABI-patients. Our study aimed to investigate whether a systematic online Skype-therapy(OLST) may be of support in favoring global cognitive and sensory-motor recovery in SABI-patients and reducing caregiver distress. METHODS: Twenty-five SABI-subjects in inpatient regimen were provided with intensive OLST with the caregiver for 12 weeks in addition to standard neurorehabilitation. Each subject and caregiver was evaluated before and after the treatment by administering an ad hoc battery. Furthermore, 18 of 27 patients were provided with EEG recording in resting state. RESULTS: We found a significant reduction in caregiver's anxiety (p<0.0001) and burden(p<0.0001). Patients showed significant improvement in trunk control (p<0.0001), functional independence (p = 0.005), functional (p = 0.01) and global communication (p = 0.004), cognitive functioning (p = 0.001), and behavioral responsiveness (p = 0.0004). The training yielded a significant connectivity change within the fronto-centro-parietal areas in the delta frequency band (p<0.0001) and the centro-parieto-occipital areas in the alpha range (p = 0.004). DISCUSSION: OLST may be a useful and complementary treatment to optimize global cognitive and functional recovery in SABI-subjects and reduce caregivers' concerns in the Covid-era. OLST can foster cognitive-motor recovery potentially by favoring the plasticity-dependent functional recovery. Therefore, OLST could be proposed as a tool allowing social conversations also in the hospital setting.

Caring for older men and women: whose caregivers are more distressed? A population-based retrospective cohort study.

BACKGROUND: To our knowledge, no population-based studies have examined whether family or friend caregivers of men and women differ in their experience of distress over time. Thus, we aimed to describe, on a population-level and longitudinally, how older men and women care-receivers differed in their health and care needs, compare their caregivers' distress trajectories, and identify factors that contribute to the observed differences. METHODS: This is a population-based, retrospective cohort study using routinely collected data. We examined longitudinally 485,407 community-dwelling Ontario residents, aged over 50 years, who have received at least one Residential Assessment Instrument-Home Care (RAI-HC) assessment between April 2008 and June 2015. Descriptive analyses were performed on the demographic characteristics, health profiles, and care needs of men and women. We also compared their caregivers' baseline and one-year change in distress status. Logistic regressions were performed to examine if the effect of gender on caregiver distress is reduced after controlling for care-receiver's health and functional status as well as their caregiver's kinship and co-residence status. RESULTS: Men (39.5% of our cohort) were frailer, required more care, were mostly cared for by their spouses (52%), and mostly lived with their caregiver (66%). In contrast, women (60.5%) were more likely cared for by their child/child-in-law (60%), less likely to live with caregivers (47%), and received less care. Caregivers of men were more likely to be distressed at baseline (27.7% versus 20.4% of women caregivers) and remain distressed (74.6% versus 69.5%) or become distressed (19.3% versus 14.3%) throughout the year. In logistic regression modelling, the effect of care-receiver's gender on caregiver distress is reduced from an unadjusted odds ratio of 1.49 (95% CI: 1.47-1.51) to 1.17 (95% CI: 1.15-1.19) when care-receiver's health and caregiving factors are controlled for. CONCLUSION: Older men and women differed in health and care needs. Caregivers, especially those caring for men, were often distressed and remained so through time. These results highlight the need for policies that account for the differential care needs and caregiver profiles of men and women in order to offer targetted and appropriate support.

Caregiver distress: A mixed methods evaluation of the mental health burden of caring for children with bladder exstrophy.

Introduction: Caring for children with bladder exstrophy-epispadias complex (BEEC) exacts a long-term emotional toll on caregivers. Previous studies leave a gap in understanding the impact that caring for a child with BEEC has on caregivers in low- and middle-income countries (LMIC). We hypothesize that families and caregivers experience psychological distress that has long gone unaddressed. Materials and methods: From 2018 to 2020, researchers conducted a multi-method evaluation of caregiver distress with participants recruited as part of the annual International Bladder Exstrophy Collaboration based in Ahmedabad, Gujarat, India. In 2018, pilot data was collected through cognitive interviews. In 2019, researchers conducted structured interviews predicated on themes from the previous year, which subsequently prompted formal mental health screenings in 2020. Caregivers who reported suicidal thoughts were immediately referred for intervention. Results: In 2018, caregivers described the primary source of stigma arose from their village (n = 9, 26.5%). Caregivers also identified long-term concerns (n = 18, 52.9%), including future fertility and marital prospects, as sources of anxiety. In 2019, caregivers substantiated preliminary findings with the primary source of anticipated (n = 9, 31%) and experienced (n = 19, 65.5%) stigma again stemming from their communities. Both cohorts identified the collaboration as a positive source of support (n = 23, 36.5%). In 2020, caregivers stated decreased emotional wellbeing as number of subsequent repairs increased (n = 54, 75%, p = 0.002). Caregivers of children who underwent initial surgery within 5 years of screening reported higher anxiety (n = 46, 63.8%) and this was exacerbated as the number of subsequent repairs increased (p = 0.043). Conclusion: Complex, long-term course of care, including additional surgeries, significantly impacts caregiver distress in the LMIC setting. Screening for caregivers of children with complex congenital anomalies, like BEEC, should be an essential element of any comprehensive effort to alleviate the global burden of disease.

Patient-caregiver dyads in pancreatic cancer: identification of patient and caregiver factors associated with caregiver well-being.

We aimed to examine the psychosocial well-being in the pancreas cancer patient-caregiver dyad, and determine patient and caregiver characteristics that predict caregiver distress. This was a cross-sectional, observational study. Demographics and caregiving characteristics were gathered from patients and caregivers. Caregivers completed validated instruments investigating anxiety, depression, perceived stress and caregiver burden. Over a period of eleven months, 128 patient-caregiver dyads were enrolled. Patient and caregiver distress scores were not associated with patient clinical disease burden. Patient distress was a significant predictor of concurrent caregiver distress, anxiety, depression, and perceived burden. Younger caregivers were also associated with higher caregiver anxiety and perceived burden. Additionally, number of caregiving activities and caregiver overall health status were predictors of concurrent caregiver depression and perceived stress. Certain pancreatic cancer patient and caregiver variables may negatively impact the well-being of caregivers. Future efforts should focus on development and implementation of comprehensive caregiver support programs for those at risk for psychosocial distress.

Comparing Behavioral and Psychological Symptoms of Dementia and Caregiver Distress Caused Between Older Adults With Dementia Living in the Community and in Nursing Homes.

Objectives: To investigate differences in behavioral and psychological symptoms of dementia (BPSD) and caregiver distress caused between older adults with dementia living in the community and in nursing homes. Design: A comparative cross-sectional study. Setting and Participants: Participants were recruited from outpatient clinics of a tertiary psychiatric hospital and dementia units of a nursing home in Guangzhou, China. Methods: Neuropsychiatric Inventory was used to assess symptoms and caregiver distress. Dementia severity was determined using the Clinical Dementia Rating. Results: This study included 157 community and 112 nursing home residents with dementia. Clinically significant symptoms (item score ≥ 4) were found in 88.5% of the former and 75% of the latter. Caregivers of 79.6% of the former and 26.8% of the latter reported that at least one of these caused them moderate-to-severe distress (distress score ≥ 3). Among the community patients, anxiety was the most frequent "very severe" symptom, while sleep disorders and agitation caused the most frequent "very severe" caregiver distress. After controlling for dementia severity and medication use, family caregiving remained an independent risk predictor for clinically significant symptoms and moderate-to-severe caregiver distress. The prediction of caregiver distress based on symptom scores varied across caregiver types and individual symptoms (R2 0.36-0.82). Group differences in clinically significant symptoms and moderate-to-severe caregiver distress showed at the stage of moderate-to-severe dementia. Conclusions and Implications: Tailored management strategies to relieve family caregivers' BPSD-induced distress are needed, especially at the stage of moderate-to-severe dementia. An effective service system should be established for supporting family caregivers to cope with BPSD.

Music, Mind, Mood, and Mingling in Alzheimer's Disease and Related Dementias: A Scoping Review.

BACKGROUND: Music-based interventions may help to alleviate neuropsychiatric symptoms of dementia and promote prosocial interactions between individuals living with dementia and their caregivers. However, current literature does not combine these evidence bases toward explanation of how music-based interventions may alleviate symptoms and promote prosocial interactions. OBJECTIVE: We conducted a scoping review to address the following question: what do the evidence bases suggest toward how music therapy or music-based therapeutic interventions might promote prosocial interactions between individuals living with dementia and their caregivers? METHODS: In this review we focused on: 1) quantitative and qualitative evidence of music-based therapies promoting prosocial behaviors in individuals living with dementia, and 2) potential neurobehavioral mechanisms associated with the processes involved with how music may promote prosocial interactions. Databases included PubMed, EBSCOhost's CINAHL and PsycINFO, Cochrane Library (sub-search conducted using ALOIS, the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group), Web of Science, clinicaltrials.gov, ProQuest's Biological Science Collection, the Journal of Music Therapy, Nordic Journal of Music Therapy, and Google Scholar. RESULTS: Sixteen original research studies were included for evidence synthesis. This scoping review reveals the need to define and clarify mechanisms of prosocial interactions between individuals living with dementia and their caregivers considering biological and social factors. These mechanisms may include dynamic interactions between preserved brain regions associated with music-evoked autobiographical memory recall and shifts from negative to positive mood states. CONCLUSION: Defining and clarifying how and to what extent music may promote prosocial behaviors using well-designed and well-controlled mixed-methods studies may positively influence the design of interventions to promote prosocial interactions with caregivers.

A qualitative exploration of the feasibility and acceptability of Meaning-Centered Psychotherapy for Cancer Caregivers.

OBJECTIVE: Caregivers of patients with cancer are at significant risk for existential distress. Such distress negatively impacts caregivers' quality of life and capacity to serve in their role as healthcare proxies, and ultimately, contributes to poor bereavement outcomes. Our team developed Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C), the first targeted psychosocial intervention that directly addresses existential distress in caregivers. METHOD: Nine caregivers of patients with glioblastoma multiforme (GBM) enrolled in a pilot randomized controlled trial evaluating the feasibility, acceptability, and effects of MCP-C, and completed in-depth interviews about their experience in the therapy. One focus group with three MCP-C interventionists was also completed. RESULTS: Four key themes emerged from interviews: (1) MCP-C validated caregivers' experience of caregiving; (2) MCP-C helped participants reframe their "caregiving identity" as a facet of their larger self-identity, by placing caregiving in the context of their life's journey; (3) MCP-C enabled caregivers to find ways to assert their agency through caregiving; and (4) the structure and sequence of sessions made MCP-C accessible and feasible. Feedback from interventionists highlighted several potential manual changes and overall ways in which MCP-C can help facilitate caregivers' openness to discussing death and engaging in advanced care planning discussions with the patient. SIGNIFICANCE OF RESULTS: The overarching goal of MCP-C is to allow caregivers to concurrently experience meaning and suffering; the intervention does not seek to deny the reality of challenges endured by caregivers, but instead to foster a connection to meaning and purpose alongside their suffering. Through in-depth interviews with caregivers and a focus group with MCP interventionists, we have refined and improved our MCP-C manual so that it can most effectively assist caregivers in experiencing meaning and purpose, despite inevitable suffering.

A feasibility study of virtual group therapy to improve quality of life of cancer caregivers.

BACKGROUND: Cancer caregiving can negatively impact the quality of life (QOL) of the caregiver. In-person interventions for improving coping skills have been shown to be effective in improving QOL for caregivers. OBJECTIVES: This pilot project explored the feasibility and acceptability of a virtual group therapy intervention to improve short-term cancer caregiver QOL. METHODS: Caregivers of cancer patients were enrolled in a structured multidisciplinary intervention of eight virtual group therapy sessions provided over four weeks between September 9, 2013 and November 17, 2014. Group sessions were led by trained facilitators and included components of physical therapy, occupational therapy, psychosocial education, cognitive-behavioral intervention, supportive discussion, spiritual reflection, and mindfulness therapy. Feasibility was based on acceptable number of recruited participants per session; acceptability was defined using attendance and 80% QOL completion rates. QOL domains and symptom burden were assessed using validated single items. RESULTS: The 20 cancer caregivers who enrolled were mostly older (80% were ≥ 65 years), female (76.5%), married to the patient (88.2%), Caucasian (100%), and highly educated (100%). 60% attended one to five sessions, 15% attended six to eight sessions, and 25% attended no sessions. Thirty percent completed pre- and post- intervention ratings of QOL items. SIGNIFICANCE OF RESULTS: Findings suggested that a virtual group therapy intervention is feasible for the cancer caregivers in this study. Although not statistically significant, the caregivers reported higher QOL and less symptom burden in multiple domains after participating in the virtual group therapy intervention.