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BackgroundUnderstanding 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.ObjectiveDescribe differences in sociodemographic, neuropsychiatric behavioral symptoms, caregiver characteristics, and psychotropic use.Design, setting, participantsCross-sectional, retrospective study including 908 UCLA Alzheimer's Dementia Care Program participants (177 with EOD and 731 with LOD).MeasurementsOnset of dementia was determined using age at program enrollment, with EOD 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.ResultsEOD 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

ObjectivesMethodsResultsConclusionDespite the established impact of care recipient cognitive impairment on care partner (CP) distress, limited quantitative research has explored how social and leisure engagement may moderate this relationship, offering a potential avenue for enhancing well-being in both care partners and recipients. The current study therefore examined the between- and within-dyad associations between cognitive impairment of persons with dementia (PwD) and their family CP’s distress, and whether social and leisure activity moderated this relationship.Data were utilized from dyads (PwD, n = 33, and their CPs, n = 34) engaged in the Voices in Motion project, a social-cognitive choral intervention for PwD and their family CPs. Measures indexing PwD cognitive status, CP distress, and PwD and CP social and leisure engagement were assessed using an intensive repeated-measures burst design, with multilevel models of change employed to disaggregate between- and within-person effects.Diminished cognitive functioning in PwD was associated with increased CP distress (p < 0.01) between-dyads; however, this relationship was not significant within-dyads. The between-dyad association was significantly moderated by the extent of social and leisure engagement of both CPs (p < .001) and PwD (p = .04). Follow-up simple slopes demonstrated that, at mean- and high-levels (+1SD) of social and leisure engagement for PwD and/or CP, increased PwD cognitive function significantly predicted lower CP distress.The significant moderating influence of social and leisure engagement of dyads underscores the protective role of such engagement for reducing care-related distress. Activity engagement for CPs and PwD may help modulate the deleterious impact of PwD cognitive impairment and attenuate CP distress. These findings highlight the potential for dyadic interventions that promote social and leisure activities to mitigate caregiving challenges and enhance quality of life for both CPs and PwD. [ABSTRACT FROM AUTHOR]

• What is the primary question addressed by this study? How do persons with early onset dementia (EOD) differ compared to persons with late onset dementia (LOD)? • What is the main finding of this study? Compared to their LOD counterparts, persons with EOD are more likely to be men, college graduates, married, live alone, and have spouse caregivers. They are also likely to have fewer comorbidities and lower severity of neuropsychiatric symptoms and caregiver distress. • What is the meaning of the finding? Understanding the differences in patient and caregiver characteristics for persons with EOD can guide clinicians in shaping care plans and targeted interventions to better meet their needs. 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. Describe differences in sociodemographic, neuropsychiatric behavioral symptoms, caregiver characteristics, and psychotropic use. Cross-sectional, retrospective study including 908 UCLA Alzheimer's Dementia Care Program participants (177 with EOD and 731 with LOD). 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. 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. 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. [ABSTRACT FROM AUTHOR]

Background: Behavioral and psychological symptoms of dementia (BPSD) influence dementia care significantly. BPSD can be affected by factors related to the patient's illness and socio-cultural background. Aim: This study aimed to find a relationship between BPSD with patients' socio-demographic and clinical profiles and their caregivers' distress in a tertiary care center. Materials and Methods: In this hospital-based cross-sectional study, the purposive sampling technique was used to select 100 dementia patients. A comprehensive record of socio-demographic and clinical details was made on a self-prepared semi-structured data sheet. The Neuropsychiatric Inventory Questionnaire was the principal tool to find the BPSD and related caregivers' distress. Results: The sample comprised predominantly Hindu (91%) male patients (66%) with Alzheimer's dementia (76%) coming from rural backgrounds (74%) and joint familial systems (96%), with a mean age of 71.77 ± 7.41 years. Patients' main caregivers were their children/children-in-law (65%). The severity of an overall BPSD and its variable individual domains were directly related to the duration of dementia, patients' age, their cognitive decline, and related decline in activities of living, as well as their caregivers' distress. In comparison to Alzheimer's disease patients, those with other dementia types had more impairment in cognitive functions and activities of daily living and they had a higher number and severity of BPSD. Conclusion: The advancing age, increased duration of dementia, and decline in cognition and related activities of daily living of the patients, as well as their caregivers' distress, are important correlates of BPSD. The findings are essential for the better management of dementia patients.

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. 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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Background: Behavioral and psychological symptoms of dementia (BPSD) influence dementia care significantly. BPSD can be affected by factors related to the patient's illness and socio-cultural background. Aim: This study aimed to find a relationship between BPSD with patients' socio-demographic and clinical profiles and their caregivers' distress in a tertiary care center. Materials and Methods: In this hospital-based cross-sectional study, the purposive sampling technique was used to select 100 dementia patients. A comprehensive record of socio-demographic and clinical details was made on a self-prepared semi-structured data sheet. The Neuropsychiatric Inventory Questionnaire was the principal tool to find the BPSD and related caregivers' distress. Results: The sample comprised predominantly Hindu (91%) male patients (66%) with Alzheimer's dementia (76%) coming from rural backgrounds (74%) and joint familial systems (96%), with a mean age of 71.77 ± 7.41 years. Patients' main caregivers were their children/children-in-law (65%). The severity of an overall BPSD and its variable individual domains were directly related to the duration of dementia, patients' age, their cognitive decline, and related decline in activities of living, as well as their caregivers' distress. In comparison to Alzheimer's disease patients, those with other dementia types had more impairment in cognitive functions and activities of daily living and they had a higher number and severity of BPSD. Conclusion: The advancing age, increased duration of dementia, and decline in cognition and related activities of daily living of the patients, as well as their caregivers' distress, are important correlates of BPSD. The findings are essential for the better management of dementia patients. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract 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

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

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. Key points: This is the first study to corroborate the relationship between maladaptive premorbid personality and the emotional distress associated with specific behavioural and psychological symptoms in dementia (BPSD) symptoms with geropsychological instruments.Different maladaptive premorbid personality traits had a significant medium‐sized correlation and increased the odds of higher total BPSD severity, associated distress and various BPSD symptoms.Maladaptive premorbid personality traits of the patient increased the odds of higher total emotional distress of the caregiver, as well as distress associated with different BPSD symptoms. [ABSTRACT FROM AUTHOR]

Introduction: Depressive symptomatology is often associated with the onset of dementia, although the exact form and directionality of this association is still unclear. The aim of this study is to investigate whether depressive symptomatology at the time of dementia diagnosis was predictive of cognitive, functional, and behavioral decline over 1 year. Methods: In a Rural and Remote Memory Clinic, 375 patients consecutively diagnosed with mild cognitive impairment, Alzheimer disease, or non-Alzheimer disease dementia completed the Center for Epidemiological Studies Depression Scale at first visit and 1-year follow-up to assess depressive symptomatology. The same cohort was evaluated for cognitive, functional, and behavioral decline through the completion of 5 clinical tests performed at the first visit and at 1-year follow-up. Results: Depressive symptomatology at time of dementia diagnosis did not predict cognitive or functional decline over 1 year, although increases in depressive symptomatology over 1 year significantly correlated with higher caregiver ratings of neuropsychiatric symptom severity and related distress over that time. Conclusion: Increasingly severe depressive symptomatology over 1 year correlated with greater caregiver distress. This study points the way for future studies delineating the relationship between depression, dementia progression, and caregiver distress. [ABSTRACT FROM AUTHOR]

Abstract 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.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. This pilot project explored the feasibility and acceptability of a virtual group therapy intervention to improve short-term cancer caregiver QOL. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background Although caregiving is considered a normal phenomenon for parents, delivering care to a child with neurodevelopmental disabilities can be taxing and disastrously impact parents' quality of life (QoL). This study explored the relationship between QoL, coping strategies, and psychosocial support status of caregivers of children with neurodevelopmental disabilities. Methodology This cross-sectional study included 906 caregivers of children having neurodevelopmental disabilities utilizing the World Health Organization Quality of Life Brief and Perceived Stress Scale. A tailored questionnaire gauged coping strategies and psychosocial support. Linear regression was used to identify significant contributors. Results Most caregivers (78.8%) experienced a moderate level of stress, and their QoL scores were 14.4 (SD = 2.5) for physical health, 12.0 (SD = 2.4) for psychological health, 14.6 (SD = 1.9) for social relationships, and 12.1 (SD = 2.1) for the environment. Mothers had the lowest QoL of all caregivers. Negative influences on QoL encompassed caregiver and child age, perceived stress, and lower socioeconomic status. A higher coping score positively predicted a high health-related QoL score. Gender differences were observed in psychosocial support sources. Conclusions The study underscores the need for policymaking considering findings to develop psychosocial intervention programs for enhancing the QoL of caregivers of children with neurodevelopmental disabilities., Competing Interests: Human subjects: Consent was obtained or waived by all participants in this study. Bangabandhu Sheikh Mujib Medical University issued approval BSMMU/2019/6025. Animal subjects: All authors have confirmed that this study did not involve animal subjects or tissue. Conflicts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following: Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work. Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work. Other relationships: All authors have declared that there are no other relationships or activities that could appear to have influenced the submitted work., (Copyright © 2024, Tasnim et al.)

Abstract Background Caregivers are invaluable sources of support for individuals recovering from head and neck cancer (HNC). Accordingly, minimizing caregiver distress is essential to promote the well-being of both caregivers and their patients. This study assessed if psychosocial distress (i.e., anxiety and depression) among HNC caregivers is associated with a difference in how caregivers and their patients perceive patients’ quality of life (QOL) after treatment completion. Methods Caregivers’ and patients’ perceptions of patient QOL were assessed using the University of Washington QOL Questionaire (UWQOL), a validated HNC-specific health-related QOL questionnaire. The survey is interpreted in terms of its two composite scores: a physical QOL score and a social-emotional QOL score with higher scores indicating better QOL. Caregiver anxiety was assessed using the Generalized Anxiety Questionaire-7 (GAD-7) and caregiver depression was assessed using the Patient Health Questionaire 8 (PHQ-8). Patients completed the UWQOL as part of clinic intake while caregivers were asked to complete the UWQOL for their patients in addition to the PHQ-8 and GAD-7 in private. Linear regression was used to analyze the association between differences in caregivers’ and patients’ QOL scores (both social-emotional and physical QOL subscale scores) and GAD-7 and PHQ-8 scores. Results Of 47 caregivers recruited, 42.6% (n = 20) viewed patients’ social-emotional QOL more negatively than patients themselves, while 31.9% viewed patients’ physical QOL more negatively. After controlling for covariates, differences in perception of social-emotional QOL (p = .01) and differences in perception of physical QOL (p = .007) were significantly associated with caregiver depression, but not anxiety. Caregivers who disagreed with patients regarding patients’ social-emotional QOL scored 6.80 points higher on the PHQ8 than agreeing caregivers. Caregivers who disagreed regarding patients’ physical QOL scored 6.09 points higher. Conclusion Caregivers commonly view patients’ QOL more negatively than patients themselves. These caregivers tend to have greater psychosocial distress than caregivers who agree with their patients. Interventions designed to identify and aid at-risk caregivers are critically needed. We propose screening for differences in perception of patient QOL as a way of identifying distressed caregivers as well as provider-facilitated communication between patients and caregivers as possible interventions that should be examined in future research.

IntroductionCaring 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 methodsFrom 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.ResultsIn 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).ConclusionComplex, 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.

Research has highlighted the ways that birth order relates to autism spectrum disorder (ASD) prevalence rates. However, little research has focused on how birth order relates to the wellbeing of the family once a child is diagnosed with ASD. Additionally, many family factors (such as measures of parental wellbeing) and elements of child emotional/behavioral symptoms have not yet been investigated when evaluating the potential effects of birth order. The current study aimed to investigate how family birth order may impact caregiver reporting of parental wellbeing/competency and child symptoms. Three groups were created based on caregivers (N = 155) who have (1) a first-born child with ASD and then child(ren) without ASD, (2) child(ren) without ASD and then a child with ASD, and (3) an only child with ASD. Caregivers completed questionnaires measuring family resources, child symptoms, and parental factors. Despite comparable ratings on family resources and ASD severity, significant differences based on birth order emerged. Having one or multiple children without ASD before having a child with ASD may enhance feelings of satisfaction and competency as a parent. Parents with an only child with ASD also reported higher ratings of competency, had significantly less ASD knowledge, and demonstrated a significant negative correlation between efficacy and knowledge. Families with an only child with ASD may require further support to augment their knowledge of ASD. Caregivers who have a first-born child with ASD may benefit from interventions focusing on their feelings of parental competency. • Caregivers who have a first-born child with ASD report lower feelings of competency. • Caregivers who have children before having a child with ASD report enhanced feelings of satisfaction/competency. • Families with an only child with ASD report less ASD knowledge. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention. Objective: The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14. Design: Caregiver experience was examined based on qualitative, semi-structured interviews. Participants: A total of 22 caregivers of patients who had requested MAiD were interviewed. Approach: Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology. Key Results: The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles. Conclusions: The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience. [ABSTRACT FROM AUTHOR]

Abstract Background The impact of addiction extends beyond the individual using a substance. Caring for an individual with addiction creates persistent stressful circumstances that cause worry, anger, depression, shame, guilt, anxiety, and behavioral problems within the family unit. The aim of the study The paper aims to explore the experiences of caring for a relative with a substance use disorder (SUD) and self-care strategies caregivers employ. Methods The study adopted an exploratory qualitative design. To be included in the study, participants were required to have a relative with a (SUD) disorder and not be actively using the substance themselves. Individual interviews were conducted to gather their experiences, meanings, and how they made sense of caring for a relative with a SUD. Results Twenty one participants were involved in the study, of which 17 were women, and four were men of which there had a sister, four had a brother, eight had a parent, six had a dependent, and one participant had a grandparent with a SUD. Four themes, whose overarching focus is the pains of living and caring for a family with a SUD, caused the participants and how the participants mitigated these experiences Conclusion The stress associated with caring for individuals with a SUD impacts the caregiver’s physical and mental health. Specific care modalities targeting caregivers need to be developed to address the health impact and to support self-care.

Abstract Context: Non-cognitive symptoms of dementia, also known as behavioural and psychological symptoms of dementia (BPSD) are a less researched topic in developing countries like India. These symptoms not only affect the ability to sustain daily activities and reduce the quality of life but also increase morbidity and mortality in patients with dementia. Aims: The study aimed to assess the prevalence of BPSD and various correlates associated with the severity of BPSD and caregiver distress. Subjects and Methods: It was a cross-sectional, correlational study done on 80 consecutive patients and their caregivers attending the memory clinic of Indlas VIMHANS Hospital, Vijayawada. A semi-structured proforma to collect socio-demographic data, Mini-Mental Status Examination (MMSE), The Neuropsychiatric Inventory-Questionnaire (NPI-Q), and Everyday Abilities Scale for India (EASI) were used in the study. Descriptive and inferential statistical analyses were done to find the correlation between different study variables. Results: BPSD were reported in all the dementia patients. Night-time behaviour disturbances (100%), hallucinations (86.25%), irritability (76.25%), delusions (75%), and agitation (76.25%) were more commonly reported BPSD. There was a positive correlation between BPSD severity and caregiver distress on- hallucinations (r=0.661, P

ObjectivesTo 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.DesignA comparative cross-sectional study.Setting and ParticipantsParticipants were recruited from outpatient clinics of a tertiary psychiatric hospital and dementia units of a nursing home in Guangzhou, China.MethodsNeuropsychiatric Inventory was used to assess symptoms and caregiver distress. Dementia severity was determined using the Clinical Dementia Rating.ResultsThis 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 ImplicationsTailored 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.

Background: Caregivers are invaluable sources of support for individuals recovering from head and neck cancer (HNC). Accordingly, minimizing caregiver distress is essential to promote the well-being of both caregivers and their patients. This study assessed if psychosocial distress (i.e., anxiety and depression) among HNC caregivers is associated with a difference in how caregivers and their patients perceive patients' quality of life (QOL) after treatment completion.Methods: Caregivers' and patients' perceptions of patient QOL were assessed using the University of Washington QOL Questionaire (UWQOL), a validated HNC-specific health-related QOL questionnaire. The survey is interpreted in terms of its two composite scores: a physical QOL score and a social-emotional QOL score with higher scores indicating better QOL. Caregiver anxiety was assessed using the Generalized Anxiety Questionaire-7 (GAD-7) and caregiver depression was assessed using the Patient Health Questionaire 8 (PHQ-8). Patients completed the UWQOL as part of clinic intake while caregivers were asked to complete the UWQOL for their patients in addition to the PHQ-8 and GAD-7 in private. Linear regression was used to analyze the association between differences in caregivers' and patients' QOL scores (both social-emotional and physical QOL subscale scores) and GAD-7 and PHQ-8 scores.Results: Of 47 caregivers recruited, 42.6% (n = 20) viewed patients' social-emotional QOL more negatively than patients themselves, while 31.9% viewed patients' physical QOL more negatively. After controlling for covariates, differences in perception of social-emotional QOL (p = .01) and differences in perception of physical QOL (p = .007) were significantly associated with caregiver depression, but not anxiety. Caregivers who disagreed with patients regarding patients' social-emotional QOL scored 6.80 points higher on the PHQ8 than agreeing caregivers. Caregivers who disagreed regarding patients' physical QOL scored 6.09 points higher.Conclusion: Caregivers commonly view patients' QOL more negatively than patients themselves. These caregivers tend to have greater psychosocial distress than caregivers who agree with their patients. Interventions designed to identify and aid at-risk caregivers are critically needed. We propose screening for differences in perception of patient QOL as a way of identifying distressed caregivers as well as provider-facilitated communication between patients and caregivers as possible interventions that should be examined in future research. [ABSTRACT FROM AUTHOR]

Caregiver well-being plays an important role in children's development and a number of factors have been found to impact distress levels among caregivers of children and youth referred for mental health services. Further, caregiver distress impacts youth psychopathology, its acuity as well as related mental health interventions. The purpose of this study was to develop and validate an algorithm for identifying caregivers who are at greatest risk of experiencing caregiver distress. This algorithm was derived from, and will be embedded in, existing comprehensive interRAI child and youth instruments. Ontario data based on the interRAI Child and Youth Mental Health assessment instruments (ChYMH and ChYMH-DD) were analyzed to identify predictors of distress among caregivers of children and youth ages 4–18 years. Starting with proactive aggression, the algorithm uses 40 assessment items to assign one of 30 nodes that are grouped into five levels of risk. The interRAI ChYMH Caregiver Distress (iCCareD) algorithm was validated using longitudinal data from mental health agencies across Ontario and was found to be a good predictor among this sample with a c-statistic of 0.71 for predicting new or ongoing caregiver distress and 65% for both sensitivity and specificity using algorithm values of 3 or greater. This algorithm provides an evidence-based decision-support tool embedded within a comprehensive assessment tool that may be used by clinicians to inform their selection of supports and services for families.

Objectives: Behavioral and psychological symptoms of dementia (BPSD) are associated with distress among caregivers of persons with dementia (PWD), but less is known about how relationship quality may buffer this association. This study examines the association between daily BPSD and daily perceived distress among family caregivers and the moderating role of relationship quality. Methods: Data were from 173 family caregivers of PWD from the Daily Stress and Health study. Relationship quality was assessed at the baseline interview; then on each of the 8 following consecutive days, caregivers reported frequency of daily BPSD (six domains) and their respective distress (calculated as daily distress sum and daily distress mean scores) through daily evening phone interviews at home. A 2‐level multilevel model approach was employed to differentiate within‐person (WP) and between‐person (BP) effects. Results: Greater daily BPSD occurrence was associated with higher daily distress (sum and mean scores) at WP and BP levels. However, relationship quality moderated the association between daily BPSD occurrence and daily distress sum scores at both WP and BP levels. Caregivers who reported better relationship quality with the PWD had lower levels of daily distress sum scores in response to daily BPSD occurrence, compared to their counterparts with poorer relationship quality. Conclusions: This study revealed that relationship quality attenuated the effect of daily BPSD occurrence on caregivers' distress. Future dementia caregiver education and support programs should consider building relationship quality into the personalized program design to improve caregiver mental health and well‐being. [ABSTRACT FROM AUTHOR]

To develop and test the direct and indirect associations between caregiver distress and its many contributing factors and covariates. Analysis using data from a national, cross-sectional survey of Canadian caregivers. A total of 6502 respondents of the 2012 General Social Survey-Caregiving and Care-receiving who self-identified as a caregiver. 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. 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 (β = 0.462), almost 3 times that of caregiving burden (β = 0.162). Positive emotional experiences also substantially reduced distress (β = −0.310). 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. [ABSTRACT FROM AUTHOR]

Objective: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow‐up. Methods: This cross‐sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver‐reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index—Cancer (CQOLC). Results: Caregivers (n = 1580) experienced a low‐to‐moderate risk of caregiver distress and a moderate QoL during both treatment and follow‐up. About 13% reported a high caregiver risk and 20% reported severe distress. There was a strong and significant correlation between caregiver distress and caregivers' QoL (0.793). Predictive factors for higher distress and poorer QoL were: fewer emotional and practical resources, being female, non‐spousal relationship or not living together (p < 0.05). Caregivers of patients with head‐and‐neck, skin, lung and brain cancers reported the highest distress and lowest QoL. Conclusion: Caregiver distress is highly variable, but a minority of caregivers is at high risk for caregiver distress. Professional caregivers play an important role at supporting caregivers and detecting high‐risk caregivers. [ABSTRACT FROM AUTHOR]

Context: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.Objectives: To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.Methods: Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.Results: Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.Conclusion: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving. [ABSTRACT FROM AUTHOR]

Background/Objective: People living with dementia (PLWD) in residential aged care homes (RACHs) are frequently prescribed psychotropic medications due to the high prevalence of neuropsychiatric symptoms, also known as behaviours and psychological symptoms of dementia (BPSD). However, the gold standard to support BPSD is using psychosocial/non-pharmacological therapies. This study aims to describe and evaluate services and neuropsychiatric outcomes associated with the provision of psychosocial person-centred care interventions delivered by national multidisciplinary dementia-specific behaviour support programs. Methods: A 2-year retrospective pre-post study with a single-arm analysis was conducted on BPSD referrals received from Australian RACHs to the two Dementia Support Australia (DSA) programs, the Dementia Behaviour Management Advisory Service (DBMAS) and the Severe Behaviour Response Teams (SBRT). Neuropsychiatric outcomes were measured using the Neuropsychiatric Inventory (NPI) total scores and total distress scores. The questionnaire version "NPI-Q" was administered for DBMAS referrals whereas the nursing home version "NPI-NH" was administered for SBRT referrals. Linear mixed effects models were used for analysis, with time, baseline score, age, sex, and case length as predictors. Clinical significance was measured using Cohen's effect size (d ; ≥0.3), the mean change score (MCS; 3 points for the NPI-Q and 4 points for the NPI-NH) and the mean percent change (MPC; ≥30%) in NPI parameters. Results: A total of 5,914 referrals (55.9% female, age 82.3 ± 8.6 y) from 1,996 RACHs were eligible for analysis. The most common types of dementia were Alzheimer's disease (37.4%) and vascular dementia (11.7%). The average case length in DSA programs was 57.2 ± 26.3 days. The NPI scores were significantly reduced as a result of DSA programs, independent of covariates. There were significant reductions in total NPI scores as a result of the DBMAS (61.4%) and SBRT (74.3%) programs. For NPI distress scores, there were 66.5% and 69.1% reductions from baseline for the DBMAS and SBRT programs, respectively. All metrics (d , MCS, MPC) were above the threshold set for determining a clinically significant effect. Conclusions: Multimodal psychosocial interventions delivered by DSA programs are clinically effective as demonstrated by positive referral outcomes, such as improved BPSD and related caregiver distress. [ABSTRACT FROM AUTHOR]

Context: Non-cognitive symptoms of dementia, also known as behavioural and psychological symptoms of dementia (BPSD) are a less researched topic in developing countries like India. These symptoms not only affect the ability to sustain daily activities and reduce the quality of life but also increase morbidity and mortality in patients with dementia. Aims: The study aimed to assess the prevalence of BPSD and various correlates associated with the severity of BPSD and caregiver distress. Subjects and Methods: It was a cross-sectional, correlational study done on 80 consecutive patients and their caregivers attending the memory clinic of Indlas VIMHANS Hospital, Vijayawada. A semi-structured proforma to collect socio-demographic data, Mini-Mental Status Examination (MMSE), The Neuropsychiatric Inventory-Questionnaire (NPI-Q), and Everyday Abilities Scale for India (EASI) were used in the study. Descriptive and inferential statistical analyses were done to find the correlation between different study variables. Results: BPSD were reported in all the dementia patients. Night-time behaviour disturbances (100%), hallucinations (86.25%), irritability (76.25%), delusions (75%), and agitation (76.25%) were more commonly reported BPSD. There was a positive correlation between BPSD severity and caregiver distress on-hallucinations (r=0.661, P<0.001) delusions (r=0.840, P <0.001), agitation (r=0.823, P<0.001), depression (r=0.947, P<0.001), anxiety (r=0.971, P=0.038), disinhibition (r=0.917, P<0.001), irritability (r=0.875, P<0.001), night-time behaviour disturbances (r=0.451, P<0.001), and appetite abnormality (r=0.683, P<0.001) items. On Pearson correlation care giver distress was significantly associated with - age of the patient (r=0.325, P=0.003), MMSE score (r= -0.461, P<0.001), BPSD severity (r=0.780, P<0.001) and EASI score (r=0.475, P<0.001). Severity of BPSD showed significant correlation with-age of the patient (r=0.267, P=0.017), MMSE score (r= -0.269, P=0.016) and EASI score (r=0.356, P<0.001). Conclusion: BPSD are universal in dementia and they impact the quality of the life of the patients and the caregivers. Improvement in BPSD may reduce caregiver distress and improve the quality of care received by patients. [ABSTRACT FROM AUTHOR]

Objective: We present the protocol of a study aiming to examine the efficacy of a technologically-mediated storytelling intervention called Caregiver Speaks in reducing distress and grief intensity experienced by active and bereaved hospice family caregivers of persons living with dementia (PLWD). Design: The study is a mixed-method, 2-group, randomized controlled trial. Setting: This study takes place in 5 hospice agencies in the Midwest and Northeastern United States. Participants: Participants include hospice family caregivers of PLWD. Intervention: Participants are randomized to usual hospice care or the intervention group. In the Caregiver Speaks intervention, caregivers engage in photo-elicitation storytelling (sharing photos that capture their thoughts, feelings, and reactions to caregiving and bereavement) via a privately facilitated Facebook group. This intervention will longitudinally follow caregivers from active caregiving into bereavement. The usual care group continues to receive hospice care but does not participate in the online group. Outcomes Measured: We anticipate enrolling 468 participants. Our primary outcomes of interest are participant depression and anxiety, which are measured by the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder screening (GAD-7). Our secondary outcomes of interest are participants' perceived social support, measured by the Perceived Social Support for Caregiving (PSSC) scale, and grief intensity, which is measured by the Texas Revised Inventory of Grief Present Subscale (TRIG-Present). [ABSTRACT FROM AUTHOR]

Purpose: Ovarian cancer is typically characterized by late-stage diagnoses, frequent recurrences, and treatment changes. Ovarian cancer caregivers (OCC) are thus heavily involved with cancer care and often are highly distressed. Methods: We explored the relationship with OCC distress and caregiving experiences within the healthcare system and with the healthcare providers (HCP), using a cross-sectional questionnaire study. OCC provided sociodemographic and patient medical information, and completed measures of consequences of caregiving and needs from HCP, and of depression and anxiety. We recruited participants through advertisements and two cancer centers. Results: N = 82 OCC provided complete questionnaires. Participants on average were 57.2 years old, English-speaking white men, and were partnered for 28.5 years. On average, patients were diagnosed at stage III, and treated with surgery and chemotherapy. Eight percent met clinical cut-offs for depression (23.2% in sub-clinical range), and 23.2% met clinical cut-offs for anxiety (20.7% in sub-clinical range). Depression and anxiety were significantly correlated with lacking time for social relationships, higher workload, lacking information, and needing more help from HCP. Only depression was correlated with problematic quality of information from HCP. Conclusions: OCC distress is related to their caregiving roles within the cancer care system, and how HCP support them in their responsibilities, which may contribute to a lack of time to access their supports. Perceived involvement by the HCP has an important influence on OCC distress. Higher demands of caregiving and insufficient support from the cancer care system may relate to increased distress. Our study supports the need for better integration of caregiver supports from within the healthcare system. [ABSTRACT FROM AUTHOR]

Introduction: Parkinson’s Disease (PD) is a progressive neurodegenerative disorder where the individual over time needs more and more assistance from their caregivers to carry on their life and that causes increasing burden on the caregiver. The burden for the caregiver is affecting them physically, mentally and also on a socioeconomic level. Aim: To examine the factors related to caregiver burden in caregivers of Parkinson’s patients. Materials and Methods: This was a cross-sectional study conducted in Parkinson’s clinic of a Tertiary Care Hospital of Kochi, on 100 Parkinsonism patients and their respective caregivers. Patients were assessed using the Unified PD Rating Scale (UPDRS), Hoehn and Yahr Scale (H&Y) and Mini-Mental State Examination (MMSE). Caregivers were assessed using Zerit’s Caregiver Burden inventory (CBI). Semi structured questionnaire was administered for socio-demographic details. Non parametric tests were done to examine the correlation among various variables. Results: Among the patients and caregivers, mean age was 70.65±7.30 and 67.31±8.56, respectively. Among the patient’s majority were males (n=74) while among caregivers, majority were females (n=73). Mean duration of disease was 6.79±2.68 years, mean caregiver burden score was 65.05±21.79, mean UPDRS score was 21.89±8.74 and had significant positive correlation with caregiver burden. Mean MMSE score was 17.19±4.91. The disease duration and UPDRS score had a significant positive correlation with caregiver burden score. MMSE score had significant negative correlation with caregiver burden score. Conclusion: This study concludes that a patient’s Parkinsonism related disability accounts for majority of caregiver burden. An early identification of factors contributing to stress in caregivers will help to avoid its persistency leading to a better insight in the caregiving role and thus in-patient care.

Background: The impact of addiction extends beyond the individual using a substance. Caring for an individual with addiction creates persistent stressful circumstances that cause worry, anger, depression, shame, guilt, anxiety, and behavioral problems within the family unit.the Aim Of the Study: The paper aims to explore the experiences of caring for a relative with a substance use disorder (SUD) and self-care strategies caregivers employ.Methods: The study adopted an exploratory qualitative design. To be included in the study, participants were required to have a relative with a (SUD) disorder and not be actively using the substance themselves. Individual interviews were conducted to gather their experiences, meanings, and how they made sense of caring for a relative with a SUD.Results: Twenty one participants were involved in the study, of which 17 were women, and four were men of which there had a sister, four had a brother, eight had a parent, six had a dependent, and one participant had a grandparent with a SUD. Four themes, whose overarching focus is the pains of living and caring for a family with a SUD, caused the participants and how the participants mitigated these experiences CONCLUSION: The stress associated with caring for individuals with a SUD impacts the caregiver's physical and mental health. Specific care modalities targeting caregivers need to be developed to address the health impact and to support self-care. [ABSTRACT FROM AUTHOR]

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., Competing Interests: The authors have declared that no competing interests exist., (Copyright © 2024, Kochhar et al.)

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.

Introduction: Parkinson's Disease (PD) is a progressive neurodegenerative disorder where the individual over time needs more and more assistance from their caregivers to carry on their life and that causes increasing burden on the caregiver. The burden for the caregiver is affecting them physically, mentally and also on a socioeconomic level. Aim: To examine the factors related to caregiver burden in caregivers of Parkinson's patients. Materials and Methods: This was a cross-sectional study conducted in Parkinson's clinic of a tertiary care hospital of Kochi, on 100 Parkinsonism patients and their respective caregivers. Patients were assessed using the Unified PD Rating Scale (UPDRS), Hoehn and Yahr Scale (H&Y) and Mini-Mental State Examination (MMSE). Caregivers were assessed using Zerit's Caregiver Burden inventory (CBI). Semi structured questionnaire was administered for socio-demographic details. Non parametric tests were done to examine the correlation among various variables. Results: Among the patients and caregivers, mean age was 70.65±7.3 and 67.31±8.56, respectively. Among the patient's majority were males (n=74) while among caregivers, majority were females (n=73). Mean duration of disease was 6.79±2.68 years, mean caregiver burden score was 65.05±21.79, mean UPDRS score was 21.89±8.74 and had significant positive correlation with caregiver burden. Mean MMSE score was 17.19±4.91. The disease duration and UPDRS score had a significant positive correlation with caregiver burden score. MMSE score had significant negative correlation with caregiver burden score. Conclusion: This study concludes that a patient's Parkinsonism related disability accounts for majority of caregiver burden. An early identification of factors contributing to stress in caregivers will help to avoid its persistency leading to a better insight in the caregiving role and thus in-patient care. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing awareness about the noxious effects of the 2019 Coronavirus Disease (COVID-19) pandemic on the mental health of the elderly. However, there is limited information from clinically driven research. The objectives of the present study were to examine the magnitude of psychiatric symptoms and to determine their association with caregiver distress, in a cross-section of community-dwelling older adults and a subsample of aging adults with Down syndrome (DS) attending a psychogeriatric service in São Paulo, Brazil.Method: Telephone-based interviews and electronically filled self-assessment questionnaires were used to collect information from patients and caregivers, addressing their impressions and concerns about the pandemic and related effects on the patient's emotional state and behavior. Clinical information was obtained from hospital charts, medical records, and psychometric tests administered through telephone interviews [Hospital Anxiety and Depression Scale (HADS) and Neuropsychiatric Inventory Questionnaire (NPI-Q)].Results: We included 100 consecutive participants, comprising 71 older adults with psychogeriatric/neurocognitive disorders and 29 aging adults with DS. Higher HADS and NPI-Q scores were significantly associated with caregiver distress (p < 0.05) in both groups. Correlation analyses indicated strong, positive associations between caregiver burden and scores in HADS anxiety (HADS-A) and HADS depression (HADS-D) scales in the subsamples of euploid and DS subjects. Higher NPI-Q scores in the former group were also correlated with caregiver distress, with stronger associations for neuropsychiatric symptoms. Similar findings were observed among DS subjects. ANOVA tests indicated significant associations between NPI-Q scores and caregiver distress among dementia patients, as well as with HADS scores. Similar results were found after multiple linear regressions; as such, among the elderly subsample, higher scores in HADS-A (p = 0.002) and HADS-D (p = 0.001) predict a significant impact on caregiver burden (p < 0.00001, R2 0.46); taking into consideration caregiver burden as a dependent variable and NPI-Q total score as an independent variable, we obtained significant strong prediction values for either DS (p < 0.00001, R2 0.95) or elderly adults (p < 0.00001, R2 0.88).Conclusion: During the COVID-19 pandemic, patients with neurocognitive disorders present with clinically relevant neuropsychiatric symptoms, with significant impact on caregiver distress. Apathy, aberrant motor behavior, sleep disorders, and psychoses were the main psychopathological domains, which had determined caregiver burden worsening.

Abstract Background The identification of contextual factors that modify associations between client frailty and their health and service use outcomes is essential for informed home health care and policy planning. Our objective was to examine variation in the associations between frailty and select 1-year health outcomes by caregiver distress and client sex among community-residing older care recipients. Methods We conducted a retrospective cohort study using linked population-based clinical and health administrative databases for all long-stay home care clients (n = 234,552) aged 66+ years assessed during April 2010–2013 in Ontario, Canada. Frailty was assessed using a previously validated 72-item frailty index (FI). Presence of caregiver distress was derived from clinical assessment items administered by trained home care assessors. Multivariable log-binomial regression models were used to examine variations in the associations between frailty and outcomes of interest (mortality, nursing home [NH] placement, all-cause and prolonged hospitalization) by caregiver distress, with further model stratification by client sex. Results Frailty prevalence varied little by sex (19.3% women, 19.9% men) despite significant sex-differences in clients’ sociodemographic and health characteristics. In both sexes, frailty was significantly associated with all outcomes, particularly NH placement (RR = 3.84, 95%CI 3.75–3.93) and death (RR = 2.32, 95%CI 2.27–2.37), though risk ratios were greater for women. Caregiver distress was more common with increasing frailty and for male clients, and a significant independent predictor of NH placement and prolonged hospitalization in both sexes. The association between frailty and NH placement (but not other outcomes) varied by caregiver distress for both men and women (p

Introduction: There is a growing awareness about the noxious effects of the 2019 Coronavirus Disease (COVID-19) pandemic on the mental health of the elderly. However, there is limited information from clinically driven research. The objectives of the present study were to examine the magnitude of psychiatric symptoms and to determine their association with caregiver distress, in a cross-section of community-dwelling older adults and a subsample of aging adults with Down syndrome (DS) attending a psychogeriatric service in São Paulo, Brazil. Method: Telephone-based interviews and electronically filled self-assessment questionnaires were used to collect information from patients and caregivers, addressing their impressions and concerns about the pandemic and related effects on the patient's emotional state and behavior. Clinical information was obtained from hospital charts, medical records, and psychometric tests administered through telephone interviews [Hospital Anxiety and Depression Scale (HADS) and Neuropsychiatric Inventory Questionnaire (NPI-Q)]. Results: We included 100 consecutive participants, comprising 71 older adults with psychogeriatric/neurocognitive disorders and 29 aging adults with DS. Higher HADS and NPI-Q scores were significantly associated with caregiver distress (p < 0.05) in both groups. Correlation analyses indicated strong, positive associations between caregiver burden and scores in HADS anxiety (HADS-A) and HADS depression (HADS-D) scales in the subsamples of euploid and DS subjects. Higher NPI-Q scores in the former group were also correlated with caregiver distress, with stronger associations for neuropsychiatric symptoms. Similar findings were observed among DS subjects. ANOVA tests indicated significant associations between NPI-Q scores and caregiver distress among dementia patients, as well as with HADS scores. Similar results were found after multiple linear regressions; as such, among the elderly subsample, higher scores in HADS-A (p = 0.002) and HADS-D (p = 0.001) predict a significant impact on caregiver burden (p < 0.00001, R 2 0.46); taking into consideration caregiver burden as a dependent variable and NPI-Q total score as an independent variable, we obtained significant strong prediction values for either DS (p < 0.00001, R 2 0.95) or elderly adults (p < 0.00001, R 2 0.88). Conclusion: During the COVID-19 pandemic, patients with neurocognitive disorders present with clinically relevant neuropsychiatric symptoms, with significant impact on caregiver distress. Apathy, aberrant motor behavior, sleep disorders, and psychoses were the main psychopathological domains, which had determined caregiver burden worsening. [ABSTRACT FROM AUTHOR]