High Levels Of Caregiver Burden Research Articles

Assessment of Caregiver Burden, Depression and Quality of Life Levels Among Mothers of Children with Chronic Kidney Disease

Background The causes of mental health problems among mothers of children with chronic kidney diseases (CKD) associated with childcare are still not fully understood. This study, thus, has aim to assess the intensity of caregiver burden, depression and quality of life levels in mothers of children with CKD compared to a control group. It also aims to identify determinants associated with mental health outcomes. Methods: Mothers of children diagnosed with CKD who were followed up in Pediatric Nephrology outpatient clinics were included as the case group. Mothers with similar demographic characteristics were taken as the control group. During the study, 72 children with CKD, 78 control children and their mothers were enrolled. The study data was obtained using the Sociodemographic Data Form (SDF) developed by the researchers, the Zarit Burden Interview (ZBI), the Beck Depression Inventory (BDI), and The World Health Organization Quality of Life (WHOQOL-Bref). Results: The groups did differ significantly in terms of maternal psychopathology (p = .024). The most common maternal psychopathology among mothers was Major Depressive Disorder. Mothers of children with CKD had significantly higher level of caregiver burden and depression levels. Quality of life levels among mothers of children with CKD were significantly decreased compared to controls. Caregiver burden was found to predict quality of life in mothers of children with CKD (β = −0.539; p < .050). Conclusion: Caregiving burden, depression, and poor quality of life are common among mothers of children with CKD. Addressing caregiver burden may be beneficial for quality life of mothers.

Palliative care for older adults with cardiovascular disease.

Heart disease is the number one cause of death in the United States. Advanced cardiac conditions, such as heart failure, are characterized by severe symptoms, recurrent hospitalizations, limited/uncertain prognosis, decreased quality of life, and high levels of caregiver burden. The burden of heart failure is highest in older adults, for whom cardiovascular symptoms are layered on existing age-related problems such as geriatric syndromes, polypharmacy, depression, frailty, inadequate social support, decreased representation in clinical trials, and aging caregivers. Deliberate integration of outpatient and interdisciplinary geriatrics, palliative care, and cardiovascular care are essential for this special population. Life-prolonging and quality of life-focused approaches to managing cardiovascular disease are not mutually exclusive; many cardiology medications and treatments prolong life while also improving symptom burden. Symptom management, a cornerstone of palliative care, is therefore not only complementary to life-prolonging cardiology treatments, but also integral to optimized daily cardiovascular care. In this review, we aim to summarize relevant literature and provide practical tools that can be used by primary care clinicians, geriatricians, cardiologists and palliative care clinicians to optimize holistic outpatient care for adults who are aging with heart disease. While palliative care is appropriate for any age or stage of illness, we will focus on older adults with heart disease, and the nuances of managing their symptoms, goals of care, and quality of life.

The Lived Experience of Informal Caregivers of People Who Have Severe Mental Illness and Coexisting Long-Term Conditions: A Qualitative Study.

People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carersand a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influencecaregiver burden. Our PPI panel DIAMONDS Voice provided guidance on this study fromconception, designand development of interview guides and recruitment materialsto final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

#2739 Determinants of well-being of spousal caregivers of CKD patients: a directed qualitative content analysis

Abstract Background and Aims Informal caregivers are essential to patients with chronic kidney disease (CKD) in all stages of the disease. They provide, most often unpaid, practical and emotional support to someone with whom they have a personal relationship, mostly spouses, family members and friends. Support from caregivers helps CKD patients adjust to their disease and increase treatment adherence. However, CKD puts a large burden on both patients themselves and their caregivers. Overburdening is especially seen in spousal caregivers, as they are more often older, co-residents, perform longer hours of care, and suffer more from relational stress compared to other types of informal caregivers. Although previous studies show high levels of caregiver burden, a comprehensive understanding of caregiver role, caregiver burden, and factors that may relieve this burden is lacking. Therefore, our aim was to explore both the contributing and alleviating determinants of well-being of spousal caregivers of patients with CKD in a qualitative way. Method A qualitative interview study was performed among spousal caregivers of patients with CKD. Informal caregivers were recruited by the Dutch Kidney Patients Association to assist in the development of an informal caregiver module with interviews for the Kidney Guide (Nierwijzer.nl). Fifteen face-to-face interviews were held between December 2021 and April 2022 at participants’ homes. Interviews lasted approximately 1 to 1.5 hours. All participants were adults and able to speak and understand Dutch. A directed qualitative content analysis was performed, using the stress-appraisal model as a framework. The model proposes that the care demand (primary stressors) leads to the actual provision of care by the informal caregiver (primary appraisal). Consequently, the provision of care leads to consequences for the caregiver's own life (secondary stressors), leading to burden (secondary appraisal). Finally, the experienced burden leads to the outcome, namely caregivers’ well-being. Moderators change the effect of stressors (e.g., social support may alleviate burden by sharing care tasks). Results Of the fifteen participating spousal caregivers, nine were female. Caregivers’ age ranged from 34 to 82 years. Duration of informal caregiving ranged from approximately 4 to 37 years. Most patients were on a type of kidney replacement therapy (KRT). In this study, we extended the stress-appraisal model to the context of CKD, providing a disease-specific model for practice (Fig. 1). Through this model, we describe the impact of care provision on all aspects of spousal caregivers’ lives and the burden associated with it, and identify possible modifiable factors to prevent overburdening of spousal caregivers. CKD-specific determinants included, amongst others, the impact of kidney disease and KRT on patients themselves as well as the associated caregiver tasks, for example adjusting to dietary restrictions and attending dialysis appointments. KRT options and flexibility (e.g., the choice for home or in-center dialysis) were CKD-specific moderators that alleviated burden. The care for someone on dialysis led to additional tasks (e.g., transportation to the dialysis center or assisting with home dialysis), negative impact on caregivers’ personal and social lives, and additional burden, emphasizing a distinction with caring for a CKD patient not on dialysis. Conclusion To our knowledge, this is the first study that gives a comprehensive overview of the contributing and alleviating determinants of the well-being of spousal caregivers of CKD patients. A disease-specific version of the stress-appraisal model for use in practice was provided, with evidence for all paths in the model. Moreover, we underline the need for acknowledgement of spousal caregivers in four areas: (1) personal and relational, (2) social environment, (3) healthcare, and (4) work and legislation (Fig. 2). This acknowledgement is of great importance to support and facilitate informal care within nephrology.

In-hospital psychoeducation for family caregivers of Nigerian children with cancer (The RESCUE Study).

High levels of caregiver burden (CB) are experienced by informal caregivers of pediatric patients with cancer. There is increasing evidence highlighting the extent of CB across sub-Saharan African countries, although there remains lack of interventions that target improvements in their experience. This study aimed to determine the impact of a structured psychoeducation program on caregivers' outcomes relating to preparedness to provide care, burden of caregiving, and quality of life (QoL). This quasi-experimental (pre-and-posttest) design, involved family caregivers of children on admission for cancer treatment in 4 Nigerian tertiary hospitals. Eligible participants received 2 structured, psychoeducational training sessions delivered by a multidisciplinary oncology team, focusing on the management of patients' condition, spiritual care, self-care, and support. Subjects were mainly female (79.5%) and mostly mothers to children undergoing cancer treatment (74.7%). Commonest cancer type was acute lymphoblastic leukemia (23.9%) with evidence of metastatic disease found in 9.6% of children. Significant improvements were observed between pre- and posttest for unmet needs (z = -9.3; p < 0.001), preparedness for caregiving in palliative care (PCPC) (z = -7.0; p < 0.001), and overall QoL (z = -7.3; p < 0.001). A significant reduction in CB was also reported (z = -8.7; p < 0.001). This psychoeducational intervention (PEI) resulted in significant improvements in unmet needs, CB and significant improvements in PCPC. However, a reduction in QoL of the family caregivers was also observed. Findings from this study should encourage the use of well-crafted PEIs, delivered within hospital settings to promote improvements in outcomes for informal caregivers of hospitalized children suffering from cancer, in an African context. Further intervention development is required to better understand intervention components influencing changes in outcomes, while exploring feasibility testing and adaptation to similar settings in Nigeria and within Africa.

Owners of dogs with canine cognitive dysfunction report higher levels of caregiver burden.

Owners of dogs with canine cognitive dysfunction report higher levels of caregiver burden.

Caring burden and quality of life among the caregivers of people living with dementia – a cross-sectional study in Udupi district of Karnataka

ABSTRACT Dementia is a chronic disorder of the brain that affects cognitive performance. The caregivers of individuals with dementia experience a greater burden that affects their Quality of Life (QoL). This cross-sectional study conducted in India was designed to assess the caring burden and QoL among the caregivers of people with dementia, as well as to ascertain the relationship between QoL scores and burden. Our sample included 80 caregivers of people with dementia. Most of the caregivers (n = 59, 73.8%) had a higher level of caregiver burden. There was a negative correlation between caregiver burden scores and QoL. A higher level of caregiver stress and low QoL were experienced by caregivers of dementia patients. In developing countries like India, counseling, and education on home health care for people with dementia should be provided to reduce the burden and enhance the QoL of caregivers.

Music Engagement as Part of Everyday Life in Dementia Caregiving Relationships at Home.

Emerging evidence suggests music-based interventions can improve the well-being of people living with dementia, but little is known about the ways in which music might support dementia caregiving relationships as part of everyday life at home. This study examined music engagement in the context of daily life to identify patterns of music engagement and potential targets for the design of music-based interventions to support well-being. This ethnographic, in-home study of people living with dementia and their family and professional care partners used methods from ethnomusicology, including semistructured interviews and in-home participant observation with a focus on music engagement. A total of 21 dyads were purposively recruited for diversity in terms of gender, ethnicity/race/heritage, caregiving relationship, and music experiences. Despite participants' diverse music preferences, 3 distinct music engagement patterns emerged. (a) Professional care partners intentionally integrated music listening and singing into daily life as part of providing direct care. (b) Family care partners, who had prior dementia care nursing experience or family music traditions, integrated music into daily life in ways that supported their personal relationships. (c) In contrast, family care partners, who lacked dementia care experience and had high levels of caregiver burden, disengaged from prior music-making. The distinct music engagement patterns reflect different needs on the part of dyads. It is important to continue to support dyads who engage in music daily and to consider developing music-based interventions to support well-being among dyads who have become disengaged from music.

Patient’s disability and caregiver burden among Chinese family caregivers of individual living with schizophrenia: mediation effects of potentially harmful behavior, affiliate stigma, and social support

Evidence on the associations between patient’s disability and caregiver burden among Chinese family caregivers of individual living with schizophrenia is lacking. This study aimed at explore the underlying mechanisms between patient’s disability and caregiver burden among Chinese family caregivers of individual living with schizophrenia. A cross-sectional study was carried out in four Chinese cities (Wuhan, Changsha, Guangzhou, and Shenzhen), between April, 2021 and March, 2022. A total of 493 patients and their family caregivers were invited to report related data. The Zarit burden interview, WHODAS 2.0, the Potentially harmful behavior scale, the Affiliate Stigma Scale, and the Multidimensional Scale of perceived social support were used to collect data. Linear regression analysis and bootstrapping analysis were conducted. The adjusted regression results showed that patients’ disability (B = 0.616; 95% CI: 0.479–0.753), potentially harmful behavior on caregivers (B = 0.474; 95% CI: 0.232–0.716), and caregiver’s low social support (B = −0.079; 95% CI: −0.158– −0.002), high level of affiliate stigma (B = 13.045; 95% CI: 10.227–15.864) were associated with higher level of caregiver burden (p < 0.05). In the mediation model, the direct path from patient’s disability to caregiver burden (B = 0.428, β = 0.371, p < 0.001) was significant and positive. Patient’s disability was indirectly associated with caregiver burden through patient’s potentially harmful behavior, caregiver’s affiliate stigma, and social support, the standardized regression coefficients ranged from 0.026-0.049 (p < 0.05). Patient’s potentially harmful behavior, caregiver’s affiliate stigma, and social support mediated the relationship between patients’ disability and caregiver burden. Future intervention studies designed to target these three factors may be beneficial for family caregivers of persons living with schizophrenia.

Caregivers journey through experiences of people living with dementia and history of wandering behaviour

AbstractIntroductionWandering is one of the major behavioural symptoms of dementia. It leads to the high level of caregiver burden. Understanding the caregivers’ difficulties and management strategies will help the mental health professionals to gain knowledge on feasible care techniques in India.AimAim of this study was to explore the experience of caregivers in the management of wandering among persons with dementia.MethodologyThree case studies were selected from the family caregiver population and who reported wandering behaviour and associated distress. Interview method was used to understand the experience of caregivers.ResultsAll caregivers used supervision and locking the doors of their houses as key strategies to prevent the wandering behaviour among the persons with dementia. Other prominent strategies were seeking community support and listing out the destinations in which the person is found commonly. Keeping an identity card, planned activities of daily living, restricted movement, safety planning and division of caregiving responsibility were also applied in management of wandering by family caregivers.ConclusionEarly identification of wandering behaviour and caregiver education can prevent the frequency of wandering and the associated burden. Low‐middle‐income countries are yet to develop a comprehensive case management services for the families affected by the wandering secondary to dementia.

Assessment of Parental Needs and Quality of Life in Children with a Rare Neuromuscular Disease (Pompe Disease): A Quantitative-Qualitative Study.

Pompe disease (PD) is a rare metabolic disorder with progressive neuromuscular consequences that negatively impact a child's development and quality of life (QoL). Despite an improved prognosis with treatment, the risk for early death due cardiorespiratory crisis remains. Parents not only face physical fatigue and family distress in coping with the child's special needs but also experience emotions, worries, and unexpressed needs (a "humanistic burden") that require supportive interventions. Fourteen parents of children with PD completed an online self-report questionnaire assessing their child's QoL, their own parental burden of care, and disease-related issues. The aim was to estimate the associations between the child's QoL and the caregiver's burden levels. Three mothers were also interviewed. A total of 57.1% of parents lived with moderate/severe burden conditions; worse QoL for the child was associated with higher levels of caregiver burden (rS[N = 14] = -0.67, p < 0.01). Uncertainty about the child's future was a state commonly described by mothers. However, the child's resilience, normalization of disease, and coping strategies (primarily positive appraisal and focusing on the present) alleviated suffering and helped mothers maintain family functioning. Finally, dissatisfaction with communication in relationships with professionals emerged. In conclusion, a typical pediatric palliative care approach is recommended since it manages to guarantee parents empathetic and supportive communication from healthcare professionals, alleviating feelings of isolation and loneliness in parents.

The impact of regular, low-dose, sustained-release morphine for chronic breathlessness on caregiver burden: An exploratory analysis of the BEAMS trial

Background: Chronic breathlessness adversely impacts people with chronic obstructive pulmonary disease and their caregivers (family and friends), who may, in turn, experience significant burden due to their caregiving role. Sustained-release morphine may reduce chronic breathlessness in some patients, which may have an impact on caregivers’ perceived burden. Aim: To explore the impact on caregiver burden of active treatment of people with chronic breathlessness (modified Medical Research Council (mMRC) ⩾ 3) and chronic obstructive pulmonary disease (COPD) with regular, low-dose, sustained-release morphine within a multi-site, double-blind, randomised, placebo-controlled trial. Design: Exploratory analysis of self-reported caregiver burden at baseline and end of week 3 in a randomised, double-blind, placebo-controlled study. Caregiver measures included: demographics and perceived burden (Zarit Burden Interview 12-item short-form questionnaire). Patient measures included: worst breathlessness and FitBitR-measures. Setting/participants: All consenting caregivers of trial patient participants in a multi-site study recruiting from palliative care and respiratory services. Results: Caregivers (n = 49; 59% women; median age 68 years [IQR 50–75]) reported median baseline caregiver burden 12 [IQR 5–17], with 53% reporting high burden (⩾13). Eighty-four percent of caregivers reported no change in burden. In people whose worst breathlessness improved, caregiver burden moved in the same direction, though the correlation was not significant (rs = 0.25, p = 0.17). Conversely, caregiver burden worsened as patients’ minutes lightly active increased, with the correlation being significant (rs = 0.56, p = 0.04). Conclusions: Caregivers reported high levels of caregiver burden, but patients’ response to treatment in terms of their symptom and function may influence change in caregiver burden over a three-week period.

Discrepancies in Patient and Caregiver Ratings of Personality Change in Alzheimer's Disease and Related Dementias.

Personality change in Alzheimer's disease and related dementias (ADRD) is complicated by the patient and informant factors that confound accurate reporting of personality traits. We assessed the impact of caregiver burden on informant report of Big Five personality traits (extraversion, agreeableness, conscientiousness, neuroticism, and openness) and investigated the regional cortical volumes associated with larger discrepancies in the patient and informant report of the Big Five personality traits. Sixty-four ADRD participants with heterogeneous neurodegenerative clinical phenotypes and their informants completed the Big Five Inventory (BFI). Caregiver burden was measured using the Zarit Burden Interview. Discrepancy scores were computed as the difference between patient and informant ratings for the BFI. Regional gray matter volumes from T1-weighted 3T MRI were normalized to intracranial volume and related to global Big Five discrepancy scores using linear regression. Higher levels of caregiver burden were associated with higher informant ratings of patient neuroticism (ß = 0.08, p =.012) and with lower informant ratings of patient agreeableness (ß = 0.11, p =.021) and conscientiousness (ß = 0.04, p =.034) independent of disease severity. Patients with greater Big Five discrepancy scores showed smaller cortical volumes in the right medial prefrontal cortex (β = -5.24, p =.045) and right superior temporal gyrus (β = -7.91, p =.028). Informant ratings of personality traits in ADRD can be confounded by the caregiver burden, highlighting the need for more objective measures of personality and behavior in dementia samples. Discrepancies between informant and patient ratings of personality may additionally reflect loss of insight secondary to cortical atrophy in the frontal and temporal structures.

Management of Informal Caregivers’ Burden in a Selected Region of the Czech Republic

Objective: Care of handicapped or elderly by the family members in the home environment brings not only many positives for the care recipients, but can also impose a significant burden on the caregiver. The goal of the study was to assess the caregiver burden, burnout syndrome and the effect of caregivers’ sociodemographic characteristics. Design: Cross-sectional study. Participants: The sample consisted of 168 caregivers who took care of disabled children or seniors. Methods: Zarit Burden Interview identifying the subjective burden of informal caregivers, and Maslach Burnout Inventory assessing the burnout syndrome were used. Results: A higher level of caregiver burden and the development of burnout syndrome occurring most frequently in the dimensions of Emotional Exhaustion and Personal Accomplishment was observed. The caregiver burden was found to be lower in men, in caregivers living alone, and in the respondents from higher income households; it increased with the weekly amount of care. Conclusions: The results proof the demanding nature of informal care. A longitudinal study could illuminate the temporal changes in the family dynamics.

DISRUPTED ACTIVITIES AND CAREGIVERS RESILIENCE: LONGITUDINAL PATTERNS AND ASSOCIATIONS

Abstract PurposeRelatives are often caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience-building activities offer building blocks to enhance their wellbeing and burden-bearing capacity. This study assessed the longitudinal patterns of disrupted activities of caregivers and their association with resilience reported by caregivers. MethodsData came from the National Study of Caregiving, a nationally representative study of caregivers. We analyze outcomes for caregivers for three waves of NHAT (2011-2017), estimating associations of disrupted activities and positive appraisals on 1) caregiving burden 2) resilience. Caregivers reported positive appraisals and the number of activities that have been interrupted due to their caregiving responsibilities. ResultsMultilevel models with heterogeneous within-person variance were fit to test the hypotheses on associations between disrupted activities, positive appraisals, and fluctuations in resilience and caregiving burden. Our analysis confirmed increasing disrupted activities among caregivers over time. When interrupted activities were higher than average, caregivers reported lower levels of resilience and higher levels of caregiving burden, suggesting that disrupted activities can contribute to caregivers. The reverse pattern was found for positive appraisals. ConclusionMore positive appraisals and lower levels of disrupted activities were associated with lower caregiver burden and higher levels of caregiver resilience. This study points to the critical value that caregiver self-care and positive appraisals are essential to bolster caregiver resilience and counteract caregiver burden. Future studies should illuminate the causal relation. This study will broaden our understanding of caregivers' self-care needs and provide practical implications for supporting caregivers.

Burden Experienced by Primary Caregivers of Children With Psychotic Disorders and at Clinical High Risk for Psychosis.

Despite the existing research exploring caregiver burden in adult psychosis, few studies have examined the experience of providing care to children diagnosed with psychotic disorders (PDs) and those identified as having clinical high risk for psychosis (CHR-P). This study measured the level of burden in caregivers of children with PD and CHR-P and examined associated risk factors, including social support, caregiver-child relationship, severity of illness, and frequency of psychiatric hospitalizations. A total of 56 caregivers completed validated measures and provided demographic information. Measures included the Zarit Burden Interview, the Multidimensional Scale of Perceived Social Support, the Behavior Assessment System for Children, Third Edition, Parenting Relationship Questionnaire-Child and Adolescent Form (BASC-3 PRQ-CA), and the Clinical Global Impression-Severity scale. The majority of caregivers were women (86%), mothers (84%), White (63%), married (66%), working full-time (50%), college-educated (79%), and whose mean age was 45.7 years (SD = 8.09). Nearly half of the caregivers (45%) reported a high level of caregiver burden, 39% rated their burden in the mild to moderate range, and 16% reported little to no burden. There was no significant difference in mean burden between PD and CHR-P groups. Higher caregiver burden was associated with lower levels of social support (r = -.408, p = .002), lower levels of parenting confidence (r = -.514, p < .001), higher levels of relational frustration (r = .612, p < .001), and higher severity of illness (r = .316 p = .025). These findings underscore the critical unmet need for support for caregivers of children with PD and CHR-P. Applications to clinical practice are discussed.

Abstract 183: Prioritizing Interventions To Reduce The Caregiver Burden Among Racially And Ethnically Diverse Co-survivors Of Cardiac Arrest Survivors: A Cross-sectional National Survey Study

Introduction: Cardiac arrest (CA) co-survivors i.e., close family members of CA survivors, have high levels of caregiver burden and poor quality of life. We aim to prioritize potential patient-, and co-survivor-centric interventions that may alleviate caregiver burden. Methods: We distributed an online survey to adult, co-survivor members of the Sudden Cardiac Arrest Foundation and Parent Heart Watch national databases and CA-specific Facebook groups. Participants provided demographics, details on their loved ones’ CA, and their caregiving role. They then ranked their top choice among 8 unique interventions focusing on either patient-centric education-based needs (n=4) or co-survivor-centric resources for self-care and enhanced psychological support (n=4). The survey was developed by a multidisciplinary research team and patient and co-survivor stakeholders. Results: Of 657 responses received, 550 co-survivors (57% were between the age of 18-40 years, 65% were women, 51% of minority race/ethnicity, 53% partners or spouse, an average of 8 hours of caregiving, for an average of 5 months) with the complete ranking data, were analyzed. A total of 347 (63%) co-survivors ranked patient-centric education-based interventions as their top choice ( Figure 1 shows distributions ). A multivariate model estimating the drivers of preferences for education-based interventions over co-survivors resource-based interventions showed age&gt;40 years, direct discharge to home after CA vs inpatient rehabilitation, co-survivor witnessing the CA, or assuming the caregiver role during hospitalization or within 1-month of CA, were significant predisposing factors. Conclusions: Education-based interventions, particularly information related to their loved ones’ recovery, are the top priorities for co-survivors during the early phase of CA survivorship. Future studies should focus on developing and testing these interventions for alleviation of caregiver burden.

190 CONNECTED HEALTH SUSTAINING HOME STAY IN DEMENTIA (CHESS): FACTORS ASSOCIATED WITH THE BURDEN EXPERIENCED BY CAREGIVERS OF PEOPLE WITH DEMENTIA

Abstract Background To date, little research has been carried out exploring the burden experienced by informal caregivers of People with Dementia (PwD). We explored factors that influence the burden experienced by caregivers of PwD over 12 months. Methods Fifty-two PwD and their informal caregivers were recruited by convenience sampling to the “CHESS” Study. Data were collected at five time points over 12 months between April 2017 and November 2019. Mixed model analyses were used to investigate associations of caregiver burden (measured by the Zarit-Burden Interview; ZBI) with factors in four domains: 1) Psychological Well-Being (PWB; measures of anxiety, depression, and caregiver distress); 2) Social Capital and Resources (SCR; incorporating access to community-based health services, transportation needs, education level, occupation and living situation of the PwD, and employment status of the caregiver); 3) Physical Fitness and Health (PFH; including the Quantitative Timed Up and Go (QTUG), baseline grip strength, indices of frailty, sensory acuity); and Managing Everyday life with Dementia (MED; incorporating measures of cognition, behavioural disturbances, functional ability, and indices of dependence of PwD. Results Across all domains, caregiver burden significantly increased over time (p&amp;lt;0.001) and less burden was experienced by caregivers of older PwD (p&amp;lt;0.05). In PWB, higher caregiver depression levels predicted higher levels of caregiver burden (p=0.033). In the SCR domain, caregivers of PwD who were independent in their transport needs experienced lower levels of burden (p=0.002). No other factors within the PFH or MED domains reached significance in predicting caregiver burden. Conclusion This longitudinal analysis elucidates potential predictors of caregiver burden and highlights the need for future research to be carried out in this area. In particular, psychological well-being in caregivers was shown to significantly impact on the experience of burden. Interventions to alleviate caregiver burden should be tailored to include support for psychological well-being.

Caregiver burden of patients with advanced cancer in Mexico.

181 Background: Caregivers of patients with advanced cancer often face significant physical, social, and emotional distress. In many Latin American cultures, family plays a particularly important role in the decision-making process of patients with cancer, and relatives often assume the role of unpaid caregivers. However, there is limited research about the burden associated with cancer unpaid caregiving among patients living in Latin America. We aimed to describe the profile of caregivers and to identify patient-related factors associated with caregiver burden in a third-level cancer center in Mexico City. Methods: We conducted a cross-sectional analysis of baseline data from patients with advanced cancer and their caregivers included in a multidisciplinary patient navigator-led supportive care program in Mexico City ( Te Acompañamos). At the time of enrollment in the program, caregivers completed a short version of the Zarit Burden scale and patients completed a series of screening questionnaires including assessments of quality of life (FACT-G), depression (PHQ-9), and anxiety (GAD-7). Life expectancy was calculated using the palliative performance scale (PPS). We used descriptive statistics, chi-square tests, and multivariate logistic regression analyses to understand which patient factors were associated with higher caregiver burden. Results: A total of 321 patients with advanced cancer (58% women; average age 63.3 +/- 14 years; 32.7 with hepatopancreatobiliary tumors) and 321 caregivers (67.1% women; 44% were the patient’s son/daughter; 29% were their spouses) were included. Sixty-four caregivers (20%) had a high caregiver burden (score &gt; 16 in the Zarit scale). Caregiver burden was more common among the patients’ spouses (24.1 %) followed by brothers/sisters (23.6%). On univariate analysis, moderate/severe levels of depression (p = 0.001), moderate/severe levels of anxiety (p = 0.02), and lower PPS scores (p = 0.002) were associated with a high caregiver´s burden. Multivariate analysis showed that only PPS &lt; 180 days was associated with increased odds of having caregiver burden (2.0; 95% CI 1.8-3.7); p = 0.02). Conclusions: A significant proportion of unpaid caregivers of Mexican patients with advanced cancer report high levels of caregiver burden, and the odds of having caregiver burden are increased when the patient has a calculated life expectancy of &lt;6 months. These results suggest targets for future supportive care interventions to improve caregiver wellbeing in Latin American and Hispanic populations.

The impact of anxiety on the cognitive function of informal Parkinson's disease caregiver: Evidence from task-based and resting-state fNIRS.

Informal Parkinson’s disease (PD) caregivers are considered to experience high levels of caregiver burden, negatively affecting the health of caregivers. However, few studies explored the relationship between anxiety in caregiver burden and cognitive function in informal PD caregivers. Although, no study has even investigated the neural mechanisms underlying this connection. This study aimed to conduct comprehensive cognitive and clinical assessments and evaluate brain activity from task-based state and resting-state using functional near-infrared spectroscopy (fNIRS). A total of ten informal PD caregivers and 15 matched, healthy, non-caregivers were recruited. Comprehensive cognitive and clinical assessments were conducted to evaluate five cognitive domains and mental states. Neural activity induced by verbal fluency task (VFT) and brain connectivity during resting state were monitored, and their correlations with the neuropsychological and clinical tests were explored. Our results showed that compared to non-caregiver, an informal PD caregiver exhibited no difference in most cognitive domains of function but performed better in attentional function, along with higher levels of anxiety. Decreased activation over prefrontal regions during VFT and hypo-connectivity within the frontoparietal network (FPN) and between default mode network (DMN) and FPN in the resting state were confirmed in this study as a result of the negative effects of anxiety on the brain. Furthermore, Spearman’s correlation found that neural activity in FPN during task-based state and resting state was negatively correlated with the severity of anxiety. These findings indicate that despite normal or even better cognitive function, informal PD caregivers have impaired brain function, and this deficit in neural activity was related to anxiety.