Risk Factors of Caregiver Burden in Patients With Cognitive Dysfunction: A Scoping Review

Studies on caregiver burden in patients with frontotemporal lobar degeneration are rare, differ methodologically and show variable results. Single center longitudinal pilot study on caregiver burden and potential risk factors in patients with behavioural variant frontotemporal dementia (bvFTD) and semantic (svPPA) and non-fluent variants (nfvPPA) primary progressive aphasia. Forty-six bvFTD, nine svPPA, and six nfvPPA patients and caring relatives were analysed for up to 2 years using the Mini-Mental State Examination as global measure for cognitive performance, Frontal Assessment Battery (frontal lobe functions), Frontal Behavioural Inventory (personality and behaviour), Neuropsychiatric Inventory (dementia-related neuropsychiatric symptoms), Barthel Index and Lawton IADL Scale (basic and instrumental activities of daily living), the Caregiver Strain Index (CSI), and in most participants also the Zarit Burden Interview (ZBI). CSI baseline sum scores were highest in bvFTD (mean ± SD 5.5 ± 3.4, median 5, IQR 6), intermediate in svPPA (2.9 ± 2.3; 3; 3.5) and low in nfvPPA (1.6 ± 2.1; 1; 2). Similar differences of caregiver burden were found using the ZBI. During follow-up, CSI and ZBI sum scores deteriorated in svPPA, not in bvFTD and nfvPPA, and correlated significantly with personality and behaviour, neuropsychiatric symptoms, caregiver age, and instrumental, but not basic activities of daily living, Mini-Mental State Examination scores or frontal lobe functions. This study reveals differences in caregiver burden in variants of frontotemporal lobar degeneration. Caregivers should be systematically asked for caregiver burden from the time of the diagnosis to provide comprehensive support in time.

Schizophrenia is a complex chronic mental disorder that severely impairs patients' social functioning and quality of life, while imposing substantial burdens on families and society. Long-acting injectable antipsychotics (LAIs) have demonstrated potential advantages in improving both symptoms and social functioning. This study investigated the effects of transitioning from oral antipsychotics (OAPS) to Paliperidone Palmitate Once-Monthly (PP1M) on symptom control, social functioning, and caregiver burden in schizophrenia patients. From April 11 to October 31, 2024, participants were assessed monthly using the Positive and Negative Syndrome Scale-6 (PANSS-6), Brief Psychiatric Rating Scale (BPRS), and adverse effect records. The Zarit Caregiver Burden Inventory and Personal and Social Performance (PSP) scale were administered biannually. Among 95 patients completing 6-month PP1M treatment, Zarit Burden scores decreased significantly by 44.89% (p < 0.001), while PSP scores increased by 8.60% (p = 0.001). Both PANSS-6 and BPRS total scores showed significant reductions (p < 0.00238). A moderate negative correlation was observed between BPRS improvement and PSP enhancement (r = -0.535, p < 0.001). PP1M treatment effectively controlled symptoms, improved social functioning, and reduced caregiver burden in schizophrenia patients. The significant correlation between symptom improvement and functional recovery suggests PP1M may substantially support long-term rehabilitation and quality of life enhancement.

Transcultural studies regarding the comparison of levels of burden in caregivers of patients with Alzheimer's disease (AD) from Europe and Latin America are rare. We designed this study to investigate the differentiating factors associated with burden in Brazilian and Spanish caregivers of patients with AD. This is a cross-sectional study composed by samples of outpatients with AD and their caregivers from Brazil (n = 128) and Spain (n = 146). Caregivers answered the Zarit Burden Interview (ZBI) and a Sociodemographic Questionnaire. Patients were assessed with the Mini-Mental State Examination (MMSE), Functional Activities Questionnaire (FAQ), Disability Assessment for Dementia (DAD), Neuropsychiatric Inventory (NPI), and Clinical Dementia Rating (CDR) Scale. In the multivariate regression analysis, high burden levels were reported in Brazil, when caregivers were female (p = 0.025) and when patients did not attend Day Care Center (p = 0.025). In Spain, high burden levels were associated with living with the patient (p = 0.014), younger caregivers (p = 0.003), and participation of patients at Day Care Center (p = 0.046). Also, different neuropsychiatric symptoms explained high burden levels: in Brazil, depression (p < 0.001) and anxiety (p = 0.024) and, in Spain, apathy/indifference (p < 0.001), agitation/aggression (p = 0.019) and irritability/lability (p = 0.027). Caregivers' gender, patients who attended Day Care Center and neuropsychiatric symptoms were differentiating factors in the burden of Brazilian and Spanish caregivers.

Background/Objective: Behavioral and psychological symptoms of dementia (BPSD) have been reported to affect caregiver burden in patients with dementia with Lewy bodies (DLB). However, the factor structure of BPSD and the factors that affect caregiver burden in DLB remain unknown. This study sought to classify BPSD and to reveal what type of BPSD affects caregiver burden in patients with DLB.Methods: We collected data on neuropsychiatric inventory-plus (NPI-plus), Zarit Burden Interview (ZBI), Mini-Mental State Examination (MMSE), Lawton's Instrumental Activities of Daily Living and Physical Self-Maintenance Scale (IADL/PSMS), age, and sex of 102 patients with probable DLB. An exploratory factor analysis of 13 items of the NPI-plus was carried out to classify BPSD. Multivariate regression analyses were conducted to extract the clinical variables related to caregiver burden, including factors resulting from the aforementioned factor analysis.Results: The mean age and MMSE score were 78.6 (5.6) and 20.2 (5.2), respectively. Factor analysis revealed four factors of “psychosis,” “affection,” “wakefulness,” and “hyperactivity.” “Psychosis” and “affection” factors as well as MMSE, IADL, and PSMS were significantly associated with ZBI. Multivariate regression analyses revealed that the total score of ZBI was associated with “psychosis,” “affection,” and IADL, that the personal strain score of ZBI was associated with “affection” and IADL, and that the role strain score of ZBI was associated with “wakefulness” and IADL.Conclusions: BPSD in DLB consists of three factors common to Alzheimer's disease and a specific “wakefulness” factor. In addition to IADL, each BPSD factor would affect caregiver burden in different ways in DLB.

ABSTRACTBackgroundVarious neuropsychiatric symptoms are associated with caregiver burden in patients with dementia with Lewy bodies (DLB). However, the causal relationship between individual neuropsychiatric symptoms and caregiver burden in DLB has not been investigated in Japan.MethodsThis prospective observational study was conducted at four medical centres, including 30 patients with probable DLB aged ≥ 65 years who met the McKeith DLB diagnostic criteria. Caregiver burden and neuropsychiatric symptoms were assessed using the Japanese version of the Zarit Burden Interview (J‐ZBI) and Neuropsychiatric Inventory Questionnaire, respectively. The participants were asked whether they had newly used a day service 6 months later. Data from the initial visits and the 6‐month follow‐ups were compared and analysed.ResultsAt the initial visit, the mean age of individuals with DLB was 80.8 (5.8) years; their mean Mini‐Mental State Examination score was 20.6 (5.1). J‐ZBI scores significantly increased for participants with persistence or incidence of anxiety and apathy, compared with those without or with disappearance of these symptoms. Day service use did not affect the caregiver burden. The multiple regression analyses showed that changes in cognitive function and instrumental activities of daily living scores were not associated with changes in caregiver burden. The persistence or incidence of anxiety (β = 0.599, p &lt; 0.001) and apathy (β = 0.587, p &lt; 0.001) were also independently significantly associated with increased J‐ZBI scores 6 months later.ConclusionsPersistence or incidences of anxiety and apathy may increase caregiver burden in patients with DLB. Clinicians should pay attention to these neuropsychiatric symptoms to prevent the worsening of caregiver burden.Trial RegistrationUMIN Clinical Trials Registry: UMIN000051472

PurposeThis study aimed to examine the effect of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in primary brain tumor patients and their caregivers.MethodsA parallel-group randomized controlled trial was conducted with patients who underwent surgery for a primary brain tumor between March 2019 and January 2020 in a tertiary hospital and with caregivers who cared for them at home. Eligible patients and caregivers were determined by block randomization. Outcome measures included validated measures of self-care agency (Self-Care Agency Scale), symptoms and interference by symptoms (MD Anderson Symptom Inventory Brain Tumor-Turkish Form), and caregiver burden (Caregiver Burden Scale). Two-way analysis of variance was used in repeated measurements from general linear models compared to scale scores.ResultsSelf-care agency was significantly higher in the intervention group than in the control group in the first and sixth months after surgery (p < 0.05). The severity of the patients’ emotional, focal neurologic, and cognitive symptoms and interference by symptoms were significantly lower in the intervention group than in the control group (p < 0.05). Caregiver burden was significantly lower in the intervention group in the first, third, and sixth months after surgery (p < 0.05).ConclusionDependent care theory-based post-surgical home care intervention increased patients’ self-care and reduced symptoms and their effects. It also reduced the caregiver burden. Dependent care theory can guide the nursing practices of nurses who provide institutional and/or home care services to patients with chronic diseases and their caregivers.Trial RegistrationNCT05328739 on April 14, 2022 (retrospectively registered).

Cirrhosis is a major cause of morbidity and mortality. Caregivers of cirrhotic patients provide significant support related to disease manifestations and complications. This scoping review aims to identify the prevalence of caregiver burden among patients with cirrhosis and to identify patient and caregiver factors that predict caregiver burden in patients with cirrhosis. A literature search was conducted using MEDLINE, EMBASE, CINAHL, and Web of Science to identify studies for inclusion. Screening and data extraction were performed using Covidence systematic review software (Veritas Health Innovation, Melbourne, Australia). 604 articles were identified, and 15 were included in the review. Caregivers were predominantly female and spouses of the patient. The average age of patients varied between 41.2 and 57.2 (SD 10.3 to 12.5). The most common cirrhotic aetiologies were alcohol-related, viral hepatitis-related, and metabolic-related aetiologies. The most used survey tools to assess burden were the Zarit Burden Interview (ZBI) score, Short Form-36 Health Survey (SF-36), and Beck Depression/Anxiety Inventory (BDI or BAI). Patient factors contributing toward caregiver burden included prior hepatic encephalopathy (HE), alcohol use, and high Model for End-Stage Liver Disease (MELD) scores. Caregiver factors that contribute toward caregiver burden included poor perceived social supports, low and disrupted income, and being the spouse of the patient. Several patient and caregiver factors contribute to caregiver burden, and greater levels of burden may affect multiple aspects of a caregiver's life, potentially worsening patient outcomes. A multidisciplinary approach is critical to alleviate caregiver burnout and optimize the overall care for a patient with cirrhosis.

(1) Background: Long-term caregiving for patients receiving hemodialysis (HD), is associated with physical and psychological stress, which may impact on the well-being and quality of life of caregivers. Due to a lack of understanding of the experiences of informal caregivers of patients receiving HD, especially in Saudi Arabia, this study aimed to measure burden in informal caregivers of patients receiving HD, examine the factors that predict caregiver burden (CB), and explore the experience of burden in caregivers of patients receiving HD. (2) Methods: This study used a mixed-methods, sequential, explanatory design, which consisted of two phases. Phase 1 involved a cross-sectional study design, with a convenience sample of 61 caregivers of patients on maintenance HD for at least 3 months. All caregivers in the study completed the Arabic version of the Zarit Burden Interview to identify caregiver burden. Phase 2 of the study involved a qualitative descriptive design involving semi-structured interviews with nine caregivers. (3) Results: Study findings indicate that caregivers did not experience severe burden. Being older, a female caregiver and having comorbidities was positively associated with increased levels of caregiver burden. In the qualitative phase of the study, a number of important factors emerged that may contribute to a reduction in caregiver burden, including social support, cultural acceptance, and religious influences. (4) Conclusion and impact: CB was found to be low when a comparison was made with other studies using similar populations. Understanding the factors that influence caregiver burden will contribute to the accurate assessment of caregiver burden and help reduce burden in informal caregivers, patients with renal failure, and others with chronic illnesses worldwide.

SUMMARYBackground: Behavioural and psychological disturbances occur in up to 90% of patients with Alzheimer's disease (AD), have a substantial impact on both patients and caregivers, and are often associated with the decision to institutionalise patients. Galantamine (Reminyl†) is a dual-acting cholinergic treatment that improves cognitive and functional performance, delays the onset of behavioural symptoms and decreases behaviour-associated caregiver distress.Objective: To assess the impact of galantamine on behavioural disturbances and associated caregiver burden in non-institutionalised patients with AD.Methods: This was a 3-month, open-label, multicentre study in Switzerland. Patients with mild-to-moderate AD received galantamine (escalated from 8 to 24 mg/day over 8 weeks). The primary outcome was the Neuropsychiatric Inventory (NPI) for patients who completed 3 months treatment (observed cases, OC). Secondary outcomes included the Nurses’ Observation Scale for Geriatric patients (NOSGER), and the Clinical Global Impression (CGI) of change.Results: 124 patients (mean age 75.2 years, 55.6% women) received galantamine and were included in the intention-to-treat (ITT) safety analysis. Significant improvements in NPI scores versus baseline were seen in the OC analysis ( p < 0.05, N = 91); mean total NPI scores (± SE) were reduced from 14.9 ± 1.2 at baseline to 11.3 ± 1.2 at month 3. Eleven out of 12 NPI domains were improved. Anxiety, aberrant motor behaviour, delusions, euphoria and night-time-behaviour all improved by > 30%. Symptoms with the highest baseline frequency and severity improved by 19–27%. A significant reduction in total NPI caregiver burden was observed at month 3 ( p < 0.05). Despite this short assessment period the NOSGER evaluation and physicians’ CGI also showed improvement. Adverse events (AEs) were mostly gastrointestinal.Conclusion: Galantamine significantly reduced behavioural disturbances after 3 months in this population and this had a positive impact on behaviour-related caregiver burden. Galantamine showed the expected safety profile and was well tolerated.

ObjectivesCaregiver burden in neurologic Wilson disease (NWD) has received little attention. We investigated predictors of caregiver burden in Chinese NWD patients.MethodsParticipants in this retrospective study were NWD patients admitted to The First Affiliated Hospital of Anhui University of Traditional Chinese Medicine from 1 August to 31 December 2019. Sociodemographic information was recorded for caregivers and NWD patients. Caregiver burden was evaluated using the Caregiver Burden Inventory (CBI). Cognitive impairment, functional problems, depression and anxiety were evaluated by professional interviewers. Path analysis was used to evaluate predictors of CBI scores.ResultsSixty NWD patients were enrolled (mean age: 21.35 ± 4.89 years; mean NWD duration: 7.85 ± 3.11 years). The mean CBI score was 52.00 ± 17.16. Care duration had a significant direct effect on CBI score after controlling for confounders (r = 0.493). Cognitive impairment (r = −0.426), functional problems (r = 0.581), depression (r = 0.349) and anxiety (r = 0.317) had significant indirect effects on CBI score.ConclusionCaregivers of NWD patients may experience a medium level of caregiver burden. NWD duration, cognitive impairment, functional problems, depression and anxiety in NWD patients may be useful predictors of caregiver burden.

Background and Aims: Being a caregiver for a patient with chronic liver disease (CLD) can be burdensome mentally, emotionally financially, and physically. The aim of this study was to systemically review the available tools and propose tools that can comprehensively evaluate caregiver burden for individuals caring for patients with CLD.Methods: We searched the PubMed database for all studies on the impact of patients with CLD on caregiver burden without timeframe restriction. Eligible studies included cohort studies, review studies, or cross-sectional studies. The number of patients and caregivers was isolated from each paper. Studies in the same categories were isolated and statistically compared.Results: A total of 13 studies meeting our inclusion criteria as stated in the methods sections were included. In total, 2528 caregivers were taking care of 2003 patients with CLD. Women made up the majority of caregivers at 78.2%, 95.7% of whom identified as the patient’s spouse. Caregiver strain index is one of the most comprehensive tools; however, the questions are very general and do not fully elucidate financial strain. Beck depression and anxiety were correlated (p=0.0001), and both depression and anxiety were correlated with perceived caregiver burden (PCB) and Zarit Burden Interview (ZBI) (p=0.002). Depression scale correlated with Interpersonal Support Evaluation – Short Form, and Model for End-Stage Liver Disease score correlated with ZBI and PCB (total and in most domains; p=0.001). Patient’s poorer cognitive performance correlated with higher ZBI and PCB (employed patients had higher cognitive performance and lower ZBI and PCB).Conclusions: Caregiver burden remains poorly understood due to the lack of uniformity in the assessment tools used to evaluate caregiver burden. None of the tools used to evaluate caregiver burden are comprehensive; however, most tools correlate statistically in the ability to identify caregiver burden. A comprehensive tool is lacking for identifying caregiver burden in patients with CLD.

To investigate the association between decline of basic activities of daily living (ADL) in each dimension and change in caregiver burden in patients with mild-to-moderate Alzheimer's disease. This retrospective study included 117 outpatients with Alzheimer's disease who presented to the Memory Clinic at the National Center for Geriatrics and Gerontology in Japan between September 2010 and April 2014 (mean age 77.3 ± 6.4 years; 68.6% women). Patients and their caregivers completed comprehensive geriatric assessment at baseline and at the 3-year follow up. Caregiver burden was assessed using the Japanese version of the Zarit Burden Interview. ADL were assessed by the Barthel Index. Among patients with full points on each subitem of the Barthel Index at baseline, incident ADL decline was defined as a loss of at least 5 points at the 3-year follow up. Other confounding factors including demographic data, cognitive function, vitality, and behavioral and psychiatric symptoms of dementia were also assessed. The longitudinal relationship between incident ADL decline and changes in caregiver burden was evaluated by multivariate linear regression, adjusted for confounding variables. In descending order, declines in ADL at 3 years were noted in bathing (25.4%), bowel control (25.4%), grooming (22.9%) and bladder control (22.9%). On multivariate analyses, ADL declines in feeding (b = 17.2, P < 0.01) and bathing (b = 11.0, P = 0.02) were significantly associated with increased caregiver burden. Incident ADL declines in feeding and bathing are significant risk factors for increased caregiver burden in patients with Alzheimer's disease. Geriatr Gerontol Int 2019; 19: 1243-1247.

Clinical and socio-demographic determinants of psychological health and burden in family caregivers of patients with unipolar depression

Providing caregivers with the skills and awareness of forgiveness is crucial to help them express their emotions, navigate the grieving process more smoothly, enhance their interaction with the patient, and make the time until the patient's death more meaningful. To examine the effect of forgiveness psychoeducation on death anxiety, caregiver burden, and forgiveness tendencies in caregivers of patients at the end of life. A randomized controlled experimental method was used, including a pretest, posttest, 1-month follow-up, and 3-month follow-up. The research sample included 56 caregivers of patients (experimental group = 28, control group = 28) at the end of life. During the study, forgiveness psychoeducation was administered to the experimental group, whereas no intervention was carried out in the control group. Data were collected using the Personal Information Form, Thorson-Powell Death Anxiety Scale, Caregiver Burden Scale, and Heartland Forgiveness Scale. The average scores of death anxiety and caregiving burden in the posttest and follow-up measurements of caregivers in the experimental group were statistically significantly lower than those of caregivers in the control group (P < .05). Forgiveness psychoeducation reduces death anxiety and caregiving burdens in caregivers of patients at the end of life. It is recommended to provide psychoeducation on forgiveness. The psychoeducation conducted by Consultation Liaison Psychiatry Nurses aimed at increasing the internal process of forgiveness can positively influence the communication, emotions, and spiritual development of caregivers of patients at the end of life. Thus, improving the quality of care can be achieved through forgiveness.

BACKGROUND:Family caregivers of patients undergoing hemodialysis spend a long time to caring for patients because of disability, loss of function, and dependence. Given the chronic nature of the disease, caregivers experience much burden. This study aimed to compare the effects of attending and telenursing interventions on care burden in caregivers of patients undergoing hemodialysis.MATERIALS AND METHODS:This quasi-experimental study was conducted on 66 caregivers of patients undergoing hemodialysis in Ostad Motahari Hospital in Jahrom in 2023. Participants were selected by convenience sampling and allocated randomly to the attending nursing intervention (33 caregivers) and telenursing (33 caregivers) groups. In the attending group, teaching was carried out through question–answer and group discussion over four teaching sessions in one month. After completing the intervention, the investigator met the caregivers twice over two weeks to follow-up and answer their questions. In the telenursing group, the same teaching content was provided in a 4-session teaching via Soroush on social media in one month. Participants were contacted by phone twice over two weeks to follow and answer their questions. Both groups completed the Zarit caring burden questionnaire before and four weeks after the follow-up. Data were analyzed using descriptive and inferential statistics using the SPSS 20.RESULTS:Results showed that the mean of caring burden significantly decreased in caregivers in the telenursing and attending groups after the intervention compared to before the intervention (P < .001). After the intervention, the mean of caring burden in the telenursing group (24.27 ± 6.09) was less than the attending group (28 ± 8.36). There was a significant difference in the mean of caring burden between the attending and telenursing groups after the intervention (P = .04).CONCLUSION:According to the results of this study, both attending and telenursing interventions showed significant effectiveness in decreasing the caring burden of hemodialysis patients’ caregivers. A comparison of these two interventions showed that the telenursing intervention has more effectiveness than the attending intervention. Health policymakers can make the necessary plans to benefit from telenursing and prioritize the use of it.