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Background Dementia in the oldest-old is projected to increase exponentially as is the burden of their caregivers who may experience unique challenges and suffering. Thus, we aim to investigate which factors are associated with older caregivers’ burden in caring demented outpatients in a multicenter cohort. Methods Patients and their caregivers, both aged ≧65 years, in the National Dementia Registry Study in Taiwan (T-NDRS) were included in this study. Caregiver burden was measured with the short version of the Zarit Burden Interview (ZBI). The correlations between the ZBI scores and characteristics of caregivers and patients, including severity of dementia, physical comorbidities, instrumental activities of daily living (IADL), neuropsychiatric symptoms assessed by the Neuropsychiatric Inventory (NPI), and family monthly income, were analyzed. Results We recruited 328 aged informal caregiver-patient dyads. The mean age of caregivers was 73.7 ± 7.0 years, with female predominance (66.8%), and the mean age of patients was 78.8 ± 6.9 years, with male predominance (61.0%). Multivariable linear regression showed that IADLs (β = 0.83, p  < 0.001) and NPI subscores of apathy (β = 3.83, p  < 0.001)and irritability (β = 4.25, p  < 0.001) were positively associated with ZBI scores. The highest family monthly income (β = − 10.92, p  = 0.001) and caregiver age (β = − 0.41, p  = 0.001) were negatively correlated with ZBI scores. Conclusions Older caregivers of older demented patients experience a higher care burden when patients had greater impaired functional autonomy and the presence of NPI symptoms of apathy and irritability. Our findings provide the direction to identify risky older caregivers, and we should pay more attention to and provide support for these exhausted caregivers.

Background Caring for a partner or family member with Parkinson’s disease (PD) negatively affects the caregiver’s own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status. Methods Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson’s Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers). Results Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day). Conclusions This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD. Trial registration: N/A.

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.

BACKGROUND Dementia poses a growing public health challenge in sub‐Saharan Africa, where aging populations increase caregiver demands and burden. This study examines links between caregiver dementia knowledge, caregiver burden, and the mental health of older adults in rural Uganda. METHODS Data from a cross‐sectional, door‐to‐door study included 602 caregiver–older adult pairs. Structured interviews collected demographic and health data. Caregivers completed the Dementia Knowledge Assessment Scale and the Zarit Burden Interview. RESULTS The prevalence of caregiver burden was 28.9%. Higher dementia knowledge, lower income, caregiver depression, and age were associated with increased caregiver burden. DISCUSSION Findings suggest that dementia knowledge may not reduce caregiver burden. Interventions targeting mental health for both caregivers and older adults are needed in rural eastern Uganda. HIGHLIGHTS Higher dementia knowledge and lower income were associated with increased caregiver burden in rural eastern Uganda. Caregiver burden, caregiver depression, and older adult characteristics (female, depression, anxiety, and loneliness) were linked to older adult depression. Caregiver and older adult mental health factors also influenced older adult anxiety and loneliness.

Purpose Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC. Methods In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer. Results Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach’s α  = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers’ burden higher than self-ratings (average measures ICC =  0.51; CI =  0.23–.69; p =  0.001). Conclusion The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.

ABSTRACTBackgroundFew studies have estimated care burden in large, representative, multi-ethnic Asian population-based informal caregivers of older adults with care needs. This study describes informal caregivers’ care participation for a population-based sample of older adults with care needs in Singapore, investigates differences by dementia status, and examines correlates of caregivers’ burden. MethodsData collected from 693 pairs of older adults, aged 60 to 100 years, having any care needs, and their informal caregivers, who were aged 21 to 88 years, closely involved in their care and “knew the older resident best,” and were interviewed during a cross-sectional national survey, were used. Clinical characteristics of older adults, including behavioral and psychological symptoms of dementia (BPSD) and dementia diagnosis, care needs, and socio-demographic characteristics of participants were obtained. Care burden was assessed with the Zarit Burden Interview. ResultsInformal caregivers’ participation was highest in activities related to communication (35.1%), feeding (32%), and bathing (21.1%). Among the older adults with any care need, 356 (51.4%) had dementia. Care burden was significantly associated with married caregivers (odds ratio (OR) 2.4 vs. never married), when their relative belonged to a younger cohort (OR 2.5 vs. >84 years), needed care much of the time (OR 2.5 vs. no care needed), exhibited BPSD (OR 3.5 vs. no BPSD), and had dementia (OR 2.52 vs. no dementia). ConclusionsFactors related to older adults – more care needs, presence of BPSD, and dementia – were significant contributors to informal caregivers’ burden, and these should be considered while planning interventions to alleviate care burden.

Background Training health professionals in serious illness conversations is important for patients with serious illnesses and for their caregivers. However, most training focuses on individual clinicians rather than on healthcare teams. Caregivers of their patients are highly sensitive to changes in communication dynamics in the healthcare setting. We aimed to compare the impact of a team-based training program in serious illness conversations with that of an individual clinician-focused training program on the burden of care of caregivers of patients with serious illnesses, and the sustainability of these impacts over time. Methods We performed a secondary analysis of caregivers’ data from a preliminary cluster randomized trial in the USA and Canada in which 42 primary care clinics were randomized to an interprofessional team-based training arm (intervention) or an individual clinician-focused training arm (control). Seriously ill patients who had had a serious illness conversation with the trained clinicians were asked to refer a caregiver. We used the Zarit Burden Interview (range: 0–48) to assess caregiver burden immediately after the serious illness conversation (T1), six months later (T2) and 12 months later (T3). Statistical analyses using a linear mixed model were performed to compare caregiver burden between the two arms at the three times. Results We included 192 caregivers from 42 primary care clinics. Most were female (67.8%); aged 65–74 (28.6%). The mean caregiver burden scores were low, and similar in both the arms at the three times. The difference in mean burden between the two study arms was 1.05 (95% CI -1.47 to 3.59; p  = 0.40), -0.24 (95% CI -2.57 to 2.08; p  = 0.82), and 0.09 (95% CI -2.61 to 2.81; p  = 0.94) at T1, T2 and T3 respectively. The p-value of the interaction term between study arm and time was p  = 0.47. Mean difference between arms after performing a model with time effect and after adjusting was 0.90 (95% CI -0.76 to 2.57; p  = 0.28). Various other factors such as caregivers feeling anxious or depressed were associated with caregiver burden. Conclusion Analysis showed that there was no difference between perceived caregiver burden after the interprofessional team-based training approach and after the individual clinician-focused training approach. Our study did however underline the importance of recognizing other factors influencing caregiver well-being. Trial registration ClinicalTrials.gov (ID: NCT03577002).

Background Raising a child with 22q11.2DS presents significant psychosocial and financial challenges for caregivers for various reasons. Research on the quality of life (QoL) of caregivers for patients with rare diseases highlights significant challenges, with caregivers reporting lower health-related QoL compared to the general population. Long-term care impacts social, health, and economic aspects of life, with the burden on caregivers inversely correlating with their QoL, affecting mobility and daily activities. Parents often manage their child's complex medical care, underscoring the need for comprehensive support systems. An online survey was developed to examine the QoL and burden of caregivers for patients with 22q11.2DS. The study utilized two tools: the Polish version of the World Health Organization (WHO) Quality of Life-BREF and the Polish version of the Zarit Burden Interview. Results The survey was completed by 134 Polish caregivers, including 125 women, with 52 not employed due to caregiving for 22q11.2DS patients. Financial security and expenditure ability were found to significantly impact all four WHOQOL Domains, with financial well-being emerging as the primary factor. Although other factors influence each Domain, financial well-being is key. The financial factor also appears in caregiver burden analysis, though not as the main influence on burden. Most caregivers rated their quality of life (QoL) significantly below the general population average: 85.1% reported below-average QoL in the Physical Domain, and 83.6% in the Social Relationships Domain. The study highlights strong correlations between WHOQOL Domains, suggesting substantial interconnections. Professional activity was shown to positively impact the Psychological Domain QoL and is crucial for reducing caregiver burden. Additionally, diagnostic delays continue to affect caregivers’ QoL negatively. Conclusion Efforts must be intensified to develop an efficient and rapid diagnostic system for 22q11.2DS. A comprehensive and holistic care system should be established to provide early and integrated support as soon as possible after birth. Psychological support for caregivers is essential, including both psychological and psychiatric assistance, respite care, and support from social institutions. This support should aim to relieve caregivers, allowing them time for themselves and the opportunity to pursue professional work if desired. Such measures can prevent feelings of exclusion and the perception that, despite being central to the care system for 22q11.2DS patients, their emotional and psychological needs are neglected by decision-makers. Targeted financial support should also be considered where necessary.

Background The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role.