22-item Zarit Burden Interview Research Articles

IJCM_323A: Assessment of Caregiver Burden Among Family Members of People Living with HIV/AIDS (PLHIV) in Costal Andhra Pradesh, India: - Mixed Method Study

Background: As PLHIV now live longer, family caregivers play a crucial role in providing physical, emotional, and financial support. This study investigates the burden experienced by family caregivers of People Living with AIDS (PLHIV) in Kakinada District, Andhra Pradesh. Objectives: 1. To assess burden Among caregivers (family members) of PLHIV. 2. To Explore care giver perspective of caring experiences Methodology: Methodology: The study is a cross-sectional study. By using mixed-method approach both qualitative and quantitative data was collected by convenient sampling method in an ART Centre of Kakinada District. Prior approval was taken from Institutional Ethics Committee. A pretested semi-structured questionnaire for socio-demographic information and validated, standardized 22-item Zarit Burden Interview (ZBI) tool to assess the perceived caregiver burden. Quantitative analysis done by using SPSS and Qualitative Information gathered through in-depth interviews. These were recorded, transcribed, translated, and later coded for analysis following thematic approach. Results: Demographics revealed that Female were 54.8% and Male were 45.2%. The mean age group was 38.38±11.5. In this study revealed that 22.6% were under severe burden & 12.9 % were moderate to severe &38.7% were mild to moderate burden. Mean Zarit Burden score was 36.32±18.8. Caregivers faced a range of challenges, pertaining to physical, psychological, emotional, social, and financial burden. Challenges experienced by the them regarding stigma and discrimination are more common. Conclusion: Majority of caregivers having Burden. Caring for someone with HIV/AIDS brings both positive and tough experiences for caregivers. ongoing support is crucial for families in this situation. Simple, focused measures can make a real difference in the well-being for caregivers and Improve Care givers experience.

Burden, Depression and Quality of Life in Carers of Newly Diagnosed Advanced Cancer Patients in Egypt

ContextThe goal of palliative care (PC) is to improve the quality of life (QoL) of patients with life-limiting illnesses as well as their families. Ideally, PC is integrated early in the course of life-limiting illnesses. Less attention has been paid to the need for early PC for family caregivers (FCs) in lower-income settings. ObjectivesThis observational cross-sectional study was conducted to explore the burden experienced by FCs of newly diagnosed incurable cancer patients in Egypt and characterize its relation to depression and QoL. MethodsNinety-five adult FCs of adult patients with newly diagnosed incurable cancer completed the 22-item Zarit Burden Interview (ZBI-22), Patient Health Questionnaire (PHQ-9), and Short Form 12 (SF-12) to assess caregiving burden, depression, and QoL among FCs, respectively. ResultsThe median (IQR) ZBI-22 score was 17(11–24) and 34% of FCs had significant burden (ZBI-22 score > 20). Assistance with late loss activities of daily living and availability for longer caregiving duration were associated significantly with higher caregiving burdens (P = 0.004 and 0.047, respectively). FCs with significant burden had significantly higher PHQ-9 scores (P = 0.0003). There was a significant negative correlation between ZBI-22 scores and the bodily pain, general health, mental health, physical function, role emotional, and social function subscales/items of SF-12. ConclusionsA substantial proportion of Egyptian FCs of incurable cancer patients experience significant burden early in the course of the disease. This burden is associated with depressive symptoms and worse QoL dimensions, physical, psychological, and social. In a lower-income setting, early PC interventions for FCs of incurable cancer patients are needed.

Caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a psychiatric tertiary hospital in South Africa.

Chronic mental illnesses such as schizophrenia affect patients' functioning, making caregiving necessary although burdensome. This study aimed to determine caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a Psychiatric Outpatient Department (POD). Tertiary hospital in Northern Pretoria, South Africa. In this cross-sectional study conducted over 3 months, 300 consecutive family caregivers who attended the POD were administered a 22-item Zarit Burden Interview (ZBI-22), which has a score of 0-88, with higher values indicating more burden. Their sociodemographic characteristics were ascertained. Linear and ordinal logistic regression analyses were performed to identify determinants or predictors of total and severe burdens, respectively. Most caregivers were aged 46.0 ± 14 years, females (62%), parents (39%), of low-income status (93.7%), had secondary education (70%), resided with the patient (87%), and helped with all troublesome activities (95.3%). The median ZBI-22 score was 19.0 (interquartile range: 13.0-30.5). The determinants of both total and severe burdens were: caregiver age ≥ 50 years adjusted odds ratio (aOR): 2.55, confidence interval (CI): 1.49-4.36; residential area farther away from the hospital aOR: 1.76, CI: 1.3-2.99; increasing months of caregiving aOR: 1.0, CI: 1.001-1.009, p = 0.006; and not having another family member that needs care aOR: 0.43, CI: 0.24-0.78. Having mental healthcare facilities close to residential areas and assisting caregivers aged ≥ 50 years who have multiple family members who need care may alleviate the burden. Predicting total and severe caregiver burdens contemporaneously is effective for identifying potential burden interventions.

Caregiver Burden of Patients With Huntington's Disease in South Korea.

This is the first prospective cohort study of Huntington's disease (HD) in Korea. This study aimed to investigate the caregiver burden in relation to the characteristics of patients and caregivers. From August 2020 to February 2022, we enrolled patients with HD from 13 university hospitals in Korea. We used the 12-item Zarit Burden Interview (ZBI-12) to evaluate the caregiver burden. We evaluated the clinical associations of the ZBI-12 scores by linear regression analysis and investigated the differences between the low- and high-burden groups. Sixty-five patients with HD and 45 caregivers were enrolled in this cohort study. The average age at onset of motor symptoms was 49.3 ± 12.3 years, with an average cytosine-adenine-guanine (CAG)n of 42.9 ± 4.0 (38-65). The median ZBI-12 score among our caregivers was 17.6 ± 14.2. A higher caregiver burden was associated with a more severe Shoulson-Fahn stage (p = 0.038) of the patients. A higher ZBI-12 score was also associated with lower independence scale (B = -0.154, p = 0.006) and functional capacity (B = -1.082, p = 0.002) scores of patients. The caregiving duration was longer in the high- than in the low-burden group. Caregivers' demographics, blood relation, and marital and social status did not affect the burden significantly. HD patients' neurological status exerts an enormous impact on the caregiver burden regardless of the demographic or social status of the caregiver. This study emphasizes the need to establish an optimal support system for families dealing with HD in Korea. A future longitudinal analysis could help us understand how disease progression aggravates the caregiver burden throughout the entire disease course.

Postdischarge Caregiver Burden Among Family Caregivers of Older Trauma Patients

Caregiver burden, characterized by psychological distress and physical morbidity, affects more than 50 million family caregivers of older adults in the United States. Risk factors for caregiver burden among caregivers of older trauma patients have not been well characterized. To characterize postdischarge caregiver burden among caregivers of older trauma patients and identify targets that can inform interventions to improve their experience. This study used a repeated cross-sectional design. Participants were family caregivers for adults 65 years or older with traumatic injury who were discharged from 1 of 2 level I trauma centers. Telephone interviews were conducted at 1 month and 3 months postdischarge with family caregivers (identified by the patient as family or friends who provided unpaid care). Admissions occurred between December 2019 and May 2021, and data were analyzed from June 2021 to May 2022. Hospital admission for geriatric trauma. High caregiver burden was defined by a score of 17 or higher on the 12-item Zarit Burden Interview. Caregiver self-efficacy and preparedness for caregiving were assessed via the Revised Scale for Caregiving Self-Efficacy and Preparedness for Caregiving Scale, respectively. Associations between caregiver self-efficacy, preparedness for caregiving, and caregiver burden were tested via mixed-effect logistic regression. There were 154 family caregivers enrolled in the study. Their mean (SD) age was 60.6 (13.0) years (range, 18-92 years), 108 of 154 were female (70.6%). The proportion of caregivers experiencing high burden (Zarit Burden Interview score ≥17) was unchanged over time (1 month, 38 caregivers [30.9%]; 3 months, 37 caregivers [31.4%]). Participants with lower caregiver self-efficacy and preparedness for caregiving were more likely to experience greater caregiver burden (odds ratio [OR], 7.79; 95% CI, 2.54-23.82; P < .001; and OR, 5.76; 95% CI, 1.86-17.88; P = .003, respectively). This study found that nearly a third of family caregivers of older trauma patients experience high caregiver burden up to 3 months after the patients' discharge. Targeted interventions to increase caregiver self-efficacy and preparedness may reduce caregiver burden in geriatric trauma.

Assessing the psychometric properties of persian version of Zarit Burden interview among family caregivers of patients with multiple sclerosis

BackgroundCaring for patients with multiple sclerosis (MS) imposes a great burden on caregivers and affects their lives in various aspects. This study aimed to evaluate the psychometric properties of Persian version of 22-item Zarit Burden Interview (ZBI-22) among family caregivers of patients with MS.MethodsThis methodological study was conducted in Fars province, southern of Iran. For this purpose, 120 family caregivers were recruited to participate in the study from January to March 2022. Zarit Burden Interview (ZBI) was translated into Persian through forward–backward method. Face and content validity were assessed. Construct validity was assessed using exploratory factor analyses (EFA), and its reliability was assessed by measuring internal consistency and testretest stability.ResultsAccording to face validity, the impact scores of all items were more than 1.5. Content validity ratio and content validity index values of all 22 items were 0.64-1 and 0.82-1, respectively. The scalelevel CVI/Ave was 0.97. Based on the results of factor analysis, five factors with eigenvalues more than 1 were extracted, which altogether explained 62.62% of the total variance of ZBI score. Among 22 items, one item was deleted during EFA validity assessment. Factor loading values ranged from 0.40 to 0.88. The reliability of the scale was confirmed (total Cronbach’s alpha of the ZBI = 0.88). Moreover, testretest stability assessment revealed no significant difference between test and retest scores (P > 0.05). The intraclass correlation (ICC) for the ZBI and ICCs among its factors were 0.88 and 0.6–0.86, respectively.ConclusionThe Persian version of five-factor structure ZBI can be a valid and reliable scale, and it can be used to assess caregiver burden among family caregivers of patients with MS in Iran.

Factors Influencing Caregiver Burden among Family Caregivers of Post-Stroke Persons in Wenzhou, China

Providing care to post-stroke persons who are dependent at home may lead to a burden for the family caregivers and there are various factors influencing the burden. This predictive correlational study aimed to examine the caregiver burden at three months after providing care for post-stroke persons and examine whether caregiver health status, caregiver amount of caregiving activities, and caregiver mutuality can predict caregiver burden at three months after providing care for the post-stroke persons in Wenzhou, China. A simple random sampling was used to recruit 101 family caregivers who took the patients to follow-up at the outpatient department of the First Affiliated Hospital of Wenzhou Medical University in China. Data were collected using questionnaires including the demographic questionnaire, The SF-12 Health Survey Version 2, The Caregiving Activities Scale, The Mutuality Scale, and The 12-item Zarit Burden Interview. Data were analyzed using descriptive statistics and standard multiple regression. The results showed that the family caregiver burden was at a mild to moderate level with a mean score of 18.29 (SD = 4.9). Standard multiple regression revealed health status (β = -.30, p &lt; .001), caregiver amount of caregiving activities (β = .24, p &lt; .001), caregiver mutuality (β = -.38, p &lt; .001) as the predictor of caregiver burden. The findings provided information for developing an appropriate nursing intervention to prevent progressive caregiver burden, and, in turn, will enable post-stroke persons to receive effective care by targeting caregiver health status, caregiver amount of caregiving activities, and caregiver mutuality.

1219 INFORMAL CAREGIVERS OF PEOPLE WITH PARKINSONISM IN THE PRIME-UK CROSS-SECTIONAL STUDY

Abstract Introduction Many people with parkinsonism require care as the disease progresses with much provided unpaid by family and friends. Caring for someone can have a negative impact on physical and psychosocial wellbeing. Caregiver burden can impact ability to continue this role, which can precipitate hospitalisation or institutionalisation of the recipient. Methods In this single-site study, primary, informal caregivers, defined as those providing any care or support, were enrolled alongside the person with parkinsonism or individually. Self-reported questionnaires included the 22-item Zarit Burden Interview (ZBI), which can range from 0-88, with higher scores representing greater burden. Linear regression was used to explore the association between recipient characteristics/need and caregiver burden. Results Of 1,032 eligible patients approached, 813 participants indicated whether they had an informal caregiver (708) or not (105). 376 caregivers consented (53.1%), of whom 321 have returned questionnaires, with patient data available for 296. The median age of caregivers was 73.0 (range 27.0- 91.1 years), 237 (73.8%) female. 274 (85.4%) were the spouse/partner of the patient. 215 (67.0%) were the sole caregiver. The median time per week spent caring was 21 hours (interquartile range 7, 41 hours). 18 (5.6%) of caregivers provided 24-hour care daily and 113 (35.2%) had provided support for over 5 years. Median ZBI score was 17, (interquartile range 7-29). The care recipient’s duration of parkinsonism was associated with higher burden score (0.38 increase per year of parkinsonism; 95% CI 0.07, 0.69; p value 0.015), as was the time per week spent caring (0.16 increase for each additional hour; 95% CI 0.11, 0.20; p value &amp;lt;0.0001). Conclusions Many informal caregivers in this study were the sole caregiver and many were themselves older adults. Burden increased with increasing duration of parkinsonism and as time spent caring increased. This highlights the ongoing need to improve support for this group.

Development and Validation of a Multidimensional Short Version Zarit Burden Interview (ZBI-9) for Caregivers of Persons With Cognitive Impairment.

There is a lack of appreciation of the full dimensionality of the original 22-item Zarit Burden Interview (ZBI) in the development of short versions. Existing short versions are premised upon a 1-factor or 2-factor structure or statistical techniques for item selection. Thus, there is a need for ZBI short versions that considers the multidimensional constructs of role strain, personal strain, and worry about performance (WaP) during item selection to provide a more holistic and comprehensive evaluation. To develop and validate a short version of ZBI through a combined quantitative and qualitative approach that incorporates the validated 4-factor structure of role strain demands; role strain-control; personal strain, and WaP. We studied 202 caregivers of patients with dementia (84.2%) or mild cognitive impairment (15.8%) attending a memory clinic in Singapore. Confirmatory factor analysis and qualitative considerations from expert consensus were used for item selection. Confirmatory factor analysis fit statistics support the 4-factor structure. The 9-item ZBI-9 showed good internal consistency (Cronbach's α=0.87) and convergent validity with anxiety and depression (Pearson correlation: Hospital Anxiety and Depression sub-scales, r≥0.56, P <0.001; ZBI- 22, r=0.95, P <0.001). Using a cut-off score of ≥13, ZBI-9 displayed good discriminatory ability for depressive symptoms (area under curve=0.79, P <0.001; sensitivity=70%, specificity=75%). The ZBI-9 also displayed comparable performance to the 22-item full version and three 12-item short versions. The ZBI-9 is a multidimensional short-version assessment tool for caregivers of persons with dementia and mild cognitive impairment that is reliable, valid, and discriminates depressive symptoms.

Violence against caregivers of older adults with chronic diseases is associated with caregiver burden and depression: a cross-sectional study

BackgroundCaregivers play a vital role in caring for the aging population, however the occurrence of violence against the caregiver is an increasing area of concern. This study aimed to investigate the prevalence of violence against the primary caregivers of community dwelling older adults with chronic diseases, and to determine the factors associated with violence and its association with caregiver outcomes.MethodsA cross-sectional study was conducted. HITS questionnaire, the 22-item Zarit Burden Interview and Patient Health Questionnaire-9 were used to assess violence against caregiver, caregiver burden and depression, respectively.ResultsOut of 123 caregivers of older adults, the overall prevalence of violence was 28.46%. Independent variables which could be the protective factors for violence against caregiver included higher ADL, older age of caregiver, and being a relative. The patient characteristic that is a potential risk factor for violence against caregiver was having cancer as a principal diagnosis. Statistically significant associations were found between violence and caregiver burden (aOR 4.94, p 0.004) and depression (aOR 7.03, p 0.006).ConclusionViolence against caregivers of older adults is not uncommon. Experiencing violence was found to be associated with caregiver outcomes including depression and caregiver burden. Therefore, this important issue must not be ignored.

Study protocol: SOcial LImitations Turn Up DEmentia (SOLITUDE)—Impact of COVID‐19 social isolation on patients’ cognition and mental health and on carers’ wellbeing

BackgroundSocial isolation and loneliness are both known to exert detrimental effects on mental health and cognitive functioning, as well as on medial temporal lobe volume in older adults. Reduced social interactions have also been found to increase the risk of cognitive decline and dementia in older people. Since restrictions to social contacts have been imposed to tackle the current Coronavirus Disease 2019 (COVID‐19) pandemic, this study aims to investigate the long‐term impact of the resulting social isolation on people with mild dementia and their carers.MethodThis study has been implemented using a multi‐centre longitudinal observational design to monitor mental health (9‐item Patient Health Questionnaire and Neuropsychiatric Inventory Questionnaire), cognitive performance (telephone Mini‐Mental State Examination and Telephone Assessment of Cognitive Function) and quality of life (Quality of Life in Alzheimer's Disease) of patients with mild dementia due to neurodegenerative aetiologies, as well as carers’ burden (12‐item Zarit Burden Interview). Additionally, a structured interview is included to assess the potential impact of social isolation on everyday functioning of patients and carers. Participants are assessed telephonically at three time‐points: baseline and two follow‐ups after 3 and 6 months.ResultSix centres across the UK have confirmed capacity and capability to recruit up to eighty participants. Between September and December 2020, twenty‐nine participants have been recruited across different sites and completed the baseline assessment. Moreover, nine participants have already completed the 3‐month follow‐up.ConclusionThis study (predicted completion date: July 2021) is expected to provide valuable insights into the potential long‐term consequences of lockdown measures on people with dementia and their carers. Moreover, it will enable the identification of potential risk/protective factors for decline in mental health and cognition due to extensive changes in patients’ social environment. Findings from the SOLITUDE study may inform preventative and management strategies for decline in mental function targeting people with dementia, who may be the most affected by social isolation and loneliness.

Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries

BackgroundAlthough family caregivers (FCs) play an important role in the care provided to incurable cancer patients in our region, little is known about the burden they experience.This study was conducted to determine the prevalence of caregiver burden (CB) among FCs of incurable cancer patients in two Eastern Mediterranean countries and to identify factors that may be associated with significant CB.MethodsThe study included 218 FCs, 165 from Egypt and 53 from Saudi Arabia. The 22-item Zarit Burden Interview (ZBI-22) was used to assess caregiver burden CB. Significant CB was defined as a ZBI-22 score ≥ 21. The assistance with basic ADLs was classified into 3 levels according to FCs’ assistance with early/middle/late-loss basic ADLs. The relationship between CB and the assistance with ADLs and other factors was studied.ResultsThe mean (SD) ZBI-22 score among FCs was 23.4 (9.3) and the majority (128/218, 59%) had significant CB. Eighty-nine percent of FCs assisted with at least one basic ADL. Assistance with late-loss basic ADLs, best supportive care treatment plan and poorer performance status were associated with higher CB (p < 0.0001, =0.018 and = 0.005). However, in logistic regression analysis, only assistance with late-loss ADLs was independently associated with significant CB (OR = 3.4 [95%CI:1.2–9.7], p = 0.024).ConclusionA substantial proportion of FCs of incurable cancer patients in our region experience significant CB. Family caregivers assisting with late-loss basic ADLs are at risk of significant CB and should be routinely screened for CB.

Caregiver burden and health-related quality of life amongst caregivers of out-of-hospital cardiac arrest survivors

AimsTo describe burden and health-related quality of life amongst caregivers of out-of-hospital cardiac arrest survivors and explore the potential association with cognitive function of the survivors. Caregivers of patients with ST-elevation myocardial infarction were used as controls. MethodsData were collected from the cognitive substudy of the Targeted Temperature Management-trial. Caregiver burden was assessed with the 22-item Zarit Burden Interview, with scores ≤20 considered as no burden. Health-related quality of life was assessed with the SF-36v2®, with T-scores 47–53 representing the norm. Cardiac arrest survivors were categorized based on the results from cognitive assessments as having “no cognitive impairment” or “cognitive impairment”. ResultsFollow-up 6 months post event was performed for caregivers of 272 cardiac arrest survivors and 108 matched myocardial infarction controls, included at an intended ratio of 2:1. In general, caregivers of cardiac arrest survivors and controls reported similar caregiver burden. The overall scores for quality of life were within normative levels and similar for caregivers of cardiac arrest survivors and control patients. Compared to those with no cognitive impairment, caregivers of cognitively impaired cardiac arrest survivors (n = 126) reported higher levels of burden (median 18 versus 8, p < 0.001) and worse quality of life in five of eight domains, particularly “Role-Emotional” (mean 45.7 versus 49.5, p = 0.002). ConclusionsIn general, caregivers of cardiac arrest survivors and myocardial infarction controls reported similar levels of burden and quality of life. Cognitive outcome and functional dependency of the cardiac arrest survivor impact burden and quality of life of the caregiver.

Psychological distress and burden of care among family caregivers of patients with mental illness in a neuropsychiatric outpatient clinic in Nigeria.

The wellbeing of family caregivers of mentally ill persons has often been ignored, despite that family caregivers can be predisposed to psychiatric morbidities and burden in caring for their mentally ill family members. This study examined the levels of psychological distress and burden of care experienced by family caregivers who care for their mentally ill relatives in Edo State, Nigeria. This study assessed psychological distress using the General Health Questionnaire (GHQ-12). Burden of care was measured using the 22-item Zarit Burden Interview (ZBI) questionnaire. Multiple linear regression was done to determine factors associated with burden of care and psychological distress, while factor analysis was used to determine the underlying forms of burden of care and psychological distress among participants. Caregivers studied were relatives of patients diagnosed for depression (25.1%), substance use disorder (22.2%), schizophrenia (20.2%) and bipolar affective disorder (11.1%). Approximately 15% experienced no-to-mild burden, 51.3% mild-to-moderate burden and 34.0% high-or-severe burden. Nearly halve (49.0%) of participants experienced psychological distress. Severe rate of psychological distress was observed among subjects caring for patients with schizophrenia (60.7%), epilepsy (60.0%), substance use disorder (52.2%) and depression (49.0%). High burden of care was more preponderant among caregivers of relatives with mental retardation and epilepsy (50% each) and schizophrenia (39.3%). Having a higher educational qualification and being self-employed was a predictor of psychological distress. Gender of caregiver and the diagnosis schizophrenia among relatives of caregivers predisposed to burden of care. Three factors including social and emotional dysfunction, psychological distress and cognitive dysfunction were identified as components of psychological health through factor analysis. On the burden scale, six factor components were identified as: personal strain, role strain, intolerance, patients' dependence, guilt and interference in personal life. There is a high prevalence of psychological morbidity and burden of care among family caregivers providing care for persons with mental illness.

Caregiver burden and parenting stress among left-behind elderly individuals in rural China: a cross-sectional study

BackgroundOne public health problem that cannot be ignored is the mental health of left-behind elderly individuals in rural areas. However, the burden of care and parenting stress among left-behind elderly individuals has never been analyzed. The purpose of this study was to explore the level of caregiver burden and parenting stress and their relationship among left-behind elderly individuals.MethodsA total of 261 left-behind elderly people responded to the study. The 22-item Zarit Burden Interview and the 36-item Parenting Stress Index-Short Form were used.ResultsWe sent out 300 questionnaires in total. The effective rate was 87% (n = 261). Among the left-behind elderly individuals, most respondents were female (n = 171; 65.5%). The results showed that older age (OR:3.04; 95%CI: 1.307–7.048), an annual income of ¥5000–¥9900 (OR:3.25; 95%CI: 1.192–8.852) and higher parenting stress (OR:1.17; 95%CI: 1.103–1.242) were the risk factors related to higher caregiver burden in the left-behind elderly individuals. The influencing factor for lower caregiver burden in the left-behind elderly was gender (being male) (OR:0.08; 95%CI:0.036–0.178). Age (r = − 0.789; P < 0.001) and gender (r = 0.325; P < 0.001) were significant positively correlated with parenting stress, and annual income (r = − 0.717; P < 0.001) was negatively correlated with parenting stress.ConclusionParenting stress is a risk factor affecting caregiver burden of left-behind elderly individuals. Healthcare professionals should pay close attention to the caregiver burden and parenting stress of left-behind elderly individuals, especially those who are older, female and have lower income.

Caregiving in Quarantine: Evaluating the Impact of the Covid-19 Pandemic on Adult Child Informal Caregivers of a Parent.

Informal caregivers form a shadow workforce projected to become even more essential as the U.S. population ages. Most are untrained in the role and manage caregiving with competing life demands that compound burden and threaten the welfare of the older adults in their care. The 12-item Zarit Burden Interview measure was employed to investigate differences in subjective burden before and during the Covid-19 pandemic among adult children who are primary informal caregivers of a parent. Additionally, this study explored family composition to determine if the presence of siblings or dependent children affected burden scores. A convenience sample (N = 77) reported significantly more burden since the onset of the Covid-19 pandemic when compared to pre-pandemic burden. Since the pandemic began, those with living siblings reported less burden than those without siblings, while there was no difference in burden between sandwich generation caregivers and those providing care only for a parent. This study’s results point to the role family plays in resilience during a crisis and emphasizes the need to promote efficient supports and networks to alleviate caregiver burden.

An analysis of carer burden among family carers of people with and without dementia in Ireland.

Despite the policy relevance of carer burden, limited research focuses on family carers' experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (-6.95 ppts and -3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

Development and Validation of Caregiver Risk Evaluation (CaRE): A New Algorithm to Screen for Caregiver Burden

Objective: The main objective was to develop a decision-support tool to assess the risk of caregiver burden, the Caregiver Risk Evaluation (CaRE) algorithm. Methods: Home care clients were assessed using the Resident Assessment Instrument for Home Care (RAI-HC). Their caregiver completed the 12-item Zarit Burden Interview (ZBI), the main dependent measure, which was linked to the RAI-HC. Results: In the sample (n = 344), 48% were aged 85+ years and 61.6% were female. The algorithm can be collapsed into four categories (low, moderate, high, and very high risk). Relative to the low-risk group, clients in the very high-risk group had an odds ratio of 5.16 (95% confidence interval: [2.05, 12.9]) for long-term care admission, after adjusting for client age, sex, and regional health authority. Discussion: The CaRE algorithm represents a new tool to be used by home care clinicians as they proactively plan for the needs of clients and their caregivers.

PND86 THE BURDEN OF INCREMENTAL “OFF” HOURS ON CAREGIVERS OF PATIENTS WITH PARKINSON’S DISEASE: A NEUROLOGIST⁄PATIENT⁄CAREGIVER REAL-WORLD ASSESSMENT IN THE US

Patients with Parkinson’s disease (PD) treated with levodopa often develop “OFF” episodes, which are characterized by the reappearance or worsening of motor and/or non-motor symptoms. “OFF” episodes may lead to a patient’s loss of independence in basic day-to-day functioning and the need for increased caregiver aid. This study aimed to understand the association between “OFF” hours and caregiver burden. We analyzed data collected between 2017-2019 from the Adelphi Parkinson’s Disease Specific Programme, a cross-sectional, observational US study of neurologists, their consulting patients with PD, and the patients’ caregivers. “OFF” hours were physician-reported, and caregiver burden was self-reported using the 22-item Zarit Burden Interview (ZBI; range score, 0-88). Eligible patients were those who were prescribed levodopa at the time of data capture, and whose respective caregivers had voluntarily completed a caregiver self-completion form. Multiple linear regression analysis was used to determine the association between the number of daily “OFF” hours (compared continuously from zero upwards) and caregiver burden. Regressions were adjusted for patient age, sex, body mass index, comorbidities, and current disease severity as determined by the Hoehn and Yahr scale. Data were available for 235 patients who had a physician-completed patient record form and corresponding caregiver self-completion form. Patients experienced a mean (standard deviation) daily “OFF” time of 1.67 (1.85) hours. Increased daily “OFF” hours were significantly associated with increased caregiver burden for the overall ZBI score (+1.62; P=0.001) and several of its domains: personal strain (+0.91; P=0.003), role strain (+0.98; P<0.001), relationship burden (+0.42; P=0.003), emotional well-being (+0.53; P=0.001), finances (+0.13; P=0.002), and loss of control over one’s life (+0.27; P=0.014). Increased “OFF” hours among patients with PD were associated with an increased degree of burden for their caregivers, as measured by the ZBI, highlighting the importance of optimal clinical management of “OFF” episodes.

Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use

Few health systems have adopted effective dementia care management programs. The Care Ecosystem is a model for delivering care from centralized hubs across broad geographic areas to caregivers and persons with dementia (PWDs) independently of their health system affiliations. To determine whether the Care Ecosystem is effective in improving outcomes important to PWDs, their caregivers, and payers beyond those achieved with usual care. A single-blind, randomized clinical trial with a pragmatic design was conducted among PWDs and their caregivers. Each PWD-caregiver dyad was enrolled for 12 months between March 20, 2015, and February 28, 2017. Data were collected until March 5, 2018. Study interventions and assessments were administered over the telephone and internet by clinical and research teams in San Francisco, California, and Omaha, Nebraska. Of 2585 referred or volunteer PWD-caregiver dyads in California, Iowa, or Nebraska, 780 met eligibility criteria and were enrolled. A total of 512 PWD-caregiver dyads were randomized to receive care through the Care Ecosystem and 268 dyads to receive usual care. All eligible PWDs had a dementia diagnosis; were enrolled or eligible for enrollment in Medicare or Medicaid; and spoke English, Spanish, or Cantonese. Analyses were intention-to-treat. Telephone-based collaborative dementia care was delivered by a trained care team navigator, who provided education, support and care coordination with a team of dementia specialists (advanced practice nurse, social worker, and pharmacist). Primary outcome measure: Quality of Life in Alzheimer's Disease based on caregiver's rating of 13 aspects of PWD's well-being (including physical health, energy level, mood, living situation, memory, relationships, and finances) on a 4-point scale (poor to excellent). Secondary outcomes: frequencies of PWDs' use of emergency department, hospitalization, and ambulance services; caregiver depression (score on 9-Item Patient Health Questionnaire; higher scores indicate more severe depression); and caregiver burden (score on 12-Item Zarit Burden Interview; higher scores indicate more severe caregiver burden). The 780 PWDs (56.3% female; mean [SD] age, 78.1 [9.9] years) and 780 caregivers (70.9% female; mean [SD] age, 64.7 [12.0] years) lived in California (n = 452), Nebraska (n = 284), or Iowa (n = 44). Of 780 dyads, 655 were still active at 12 months, and 571 completed the 12-month survey. Compared with usual care, the Care Ecosystem improved PWD quality of life (B, 0.53; 95% CI, 0.25-1.30; P = .04), reduced emergency department visits (B, -0.14; 95% CI, -0.29 to -0.01; P = .04), and decreased caregiver depression (B, -1.14; 95% CI, -2.15 to -0.13; P = .03) and caregiver burden (B, -1.90; 95% CI, -3.89 to -0.08; P = .046). Effective care management for dementia can be delivered from centralized hubs to supplement usual care and mitigate the growing societal and economic burdens of dementia. ClinicalTrials.gov identifier: NCT02213458.