Listening to Caregivers’ Voices: The Informal Family Caregiver Burden of Caring for Chronically Ill Bedridden Elderly Patients

The informal family caregiver burden (IFCB) for chronically ill bedridden elderly patients (CIBEPs) is a major issue worldwide. It is a significant challenge due to the ongoing increased palliative care in the family setting; therefore, we explored the IFCB of caring for CIBEPs in Thailand. This article utilized a qualitative method, the total interpretive structural modeling (TISM) approach, with purposive sampling of thirty respondents between September and December 2020. The data were analyzed using cross-impact matrix multiplication applied to classification (MICMAC) to determine the relationship between the driving and dependence power of the enabling factors. The IFCB of the palliative care of CIBEPs was associated with primary care, nursing, extrinsic monitoring and complication prevention. The results showed that the IFCB involves taking responsibility, daily workload, follow-up caring, caring tasks, caregiving strain, financial distress, patient support, external support and caregiving strategy; thus, assistance with taking responsibility, extrinsic monitoring and follow-up care daily tasks may reduce the caregiver burden.

Family Caregiver Burden of Medication Administration for Older Adults Admitted to Home Hospice

Objective: To characterize FCG burden of medication administration for older adults in home hospice. Methods: Pilot clinical trial of a hospice-staff level communication and medication review program to facilitate goal-concordant prescribing, including deprescribing, for older adults in home hospice. Patients newly admitted to hospice were eligible if >=65 years, prescribed >= 5 medications and had a FCG. Exclusion criteria included being non-English speaking or having a Palliative Performance Score<40. Measurements include 24-item FCG Medication Administration Hassle Scale (range 0-96) at hospice admission and at 2-, 4-, 6-, 8-weeks and monthly until death. Descriptive statistics characterize baseline FCG Hassle score. Results: In this actively recruiting study, n=9 patient-caregiver dyads are enrolled to date. Mean patient age is 80.6 years (range 69-101). Of 9 caregivers, 7 were female, 5 children, and 3 spouses. The majority (67%) of caregivers were extremely involved in medication management. Mean FCG Hassle Score =17.1 (SE 5.9; range 2-58), and differed between spouses (mean =5 [SE 1.7; range 2-8]) and children (mean =31.4 [SE 9.53; range 3-58]). The highest burden concern was recognizing medication side effects, followed by feeling comfortable making medication decisions, arguing with the care-recipient about when to take medications, knowing why a medication is being given and whether it is effective, and knowing when to hold, increase, decrease a dose or discontinue the medication. Conclusion: FCGs of older adults in home hospice report different levels of medication administration hassle depending on their relationship to the patient. The most bothersome concern is recognizing medication side effects.

Factors Associated with Family Caregiver Burden Among Frail Older Persons With Multimorbidity

Introduction: Singapore is facing an ageing population and the care needs of the population will increase in tandem. A segment of this population would be living with the multimorbidity and frailty. Our study aimed to determine the prevalence of caregiver burden for primary family caregivers of frail older adults with multimorbidity. We also investigated the factors that were associated with primary family caregiver burden. Methods: This was an interviewer-administered, cross-sectional study of primary family caregivers of frail older patients with multimorbidity that was conducted in two National Healthcare Group polyclinics. Convenience sampling was used. The 12-item Zarit Burden Index (ZBI) was used to assess primary family caregiver burden. The scores of the ZBI range from 0 to 48, with a score of 10 or above indicating that the primary family caregiver perceives burden. Descriptive statistics were used to provide information regarding the caregivers and the care recipients. Multivariable logistic regression was used to investigate the factors affecting primary family caregiver burden. Results: 188 family caregivers were interviewed and 71.8 % of them perceived burden on the ZBI. After adjusting for other factors via multivariable analysis, the ethnicity of the caregiver and the increase in time spent caregiving per week were the two factors positively associated with family caregiver burden. A Chinese primary family caregiver had almost three times the odds of perceiving burden when compared to a non-Chinese primary family caregiver. Conclusion: Caregiver burden was high amongst primary family caregivers of frail older adults with multimorbidity. Being a Chinese primary family caregiver compared to non-Chinese ethnic groups as well as being a primary family caregiver who spent increased time caregiving per week were the two factors positively associated with family caregiver burden. Further exploratory, qualitative studies can be done to find out the reasons to Chinese primary family caregivers being more burdened compared to the non-Chinese primary family caregivers. In addition, the specific factors related to increased time caregiving per week and family caregiver burden can also be studied.

Assessment of the Psychological Burden Among Family Caregivers of People Living with Alzheimer’s Disease Using the Zarit Burden Interview

Background: In China, family caregivers play a major role in caring for people living with Alzheimer’s disease (PLWAD), but little is known about the burden this creates. Objective: This study aimed to investigate the burden among family caregivers of PLWAD and the factors influenced it. Methods: Family caregivers of PLWAD were recruited from a hospital in China from January 2018 to July 2018. All data were collected online using the Chinese version of the Zarit Burden Interview (ZBI), and the participants’ sociodemographic and caregiving details were obtained. T-tests and Kruskal-Wallis H (K) tests were used to compare ZBI scores between groups. Factors related to the caregiver psychological burden were analyzed using multiple linear regression analysis. Results: A total of 300 participants were assessed, of which 213 (71.00%) were female. More than half of the caregivers were the patient’s daughter (51.0%, n = 153). The average ZBI score of the caregivers was 43.05 (13.42). The level of burden was influenced by age, the relationship of the caregiver to the patient, the severity of AD, the caregiver’s retirement status, the income level of the caregiver, and the caring time. Regression analysis showed that retired caregivers were more likely to have higher levels of burden and that burden increased with AD severity. Conclusion: Most family caregivers of PLWAD have a considerable caregiver psychological burden. The findings increase the understanding of factors that influence family caregiver burden, and pave the way for potential interventions, such as social support and caregiver empowerment, to reduce their burden.

Behavioural and psychological symptoms of dementia in patients with Alzheimer’s disease and family caregiver burden: a path analysis

Background Studies reported the relationship between behavioural and psychological symptoms of dementia (BPSD), cognitive function, caregiver burden, and therapeutic effects. However, the causal relationship between BPSD in community-dwelling patients with Alzheimer’s disease (AD) and caregiver burden is yet to be established. This study aimed to classify BPSD in patients with AD and identify the relationship between BPSD and the factors affecting family caregiver burden. Methods Path analysis was conducted at a neurology outpatient clinic of a tertiary general hospital in South Korea. The medical records of 170 patients, aged ≥50 years, diagnosed with or suspected for AD were retrospectively reviewed. We investigated cognitive function (Korean version of the Mini-Mental-State Exam), dementia stages (Korean version of the Expanded Clinical Dementia Rating scale), depression (Short-form Geriatric Depression Scale-Korea), activities of daily living (ADL; Korean version of the Barthel Activities of Daily Living index), instrumental activities of daily living (IADL; Seoul-Instrumental Activities of Daily Living), and BPSD and caregiver burden (Korean Neuropsychiatric Inventory). Considering the characteristic features of BPSD with various symptoms, BPSD was classified using factor analysis. Factor extraction was performed using principal component analysis, followed by Varimax factor rotation. Results Mean total BPSD score was 17.66 ± 20.67, and the mean score for family caregiver burden was 9.65 ± 11.12. Symptom cluster-1 (hyperactivity symptoms) included disinhibition, irritability, and agitation/aggression. Symptom cluster-2 (psychosis symptoms) included hallucinations, anxiety, elation/euphoria, delusions, and depression/dysphoria. Symptom cluster-3 (physical behaviour symptoms) included appetite and eating abnormalities, apathy/indifference, aberrant motor behaviour, sleep, and night-time behaviour disturbances. Dementia stages, ADL, and IADL had indirect effects on family caregiver burden through hyperactivity, psychosis, and physical behaviour symptoms, indicating that BPSD exerted a complete mediating effect. Conclusions Unlike previous studies, we classified BPSD symptoms into similar symptom clusters to evaluate its effect on caregiver burden, rather than collectively investigating the 12 symptoms of BPSD. As the dementia stage worsens, symptom clusters in BPSD serve as a medium between ADL and IADL degradation and for the increase in caregivers’ burden. The development and implementation of therapeutic, nursing interventions, and policies focusing on dementia stages, ADL, and IADL, delaying and preventing BPSD can alleviate family caregivers’ burden.

Neuropsychiatric symptoms associated with family caregiver burden and depression

ABSTRACT Alzheimer's disease (AD) is a progressive and degenerative condition affecting several cognitive areas, with a decline in functional abilities and behavioral changes. Objective: To investigate the association between neuropsychiatric symptoms in older adults with AD and caregiver burden and depression. Methods: A total of 134 family caregivers of older people diagnosed with AD answered a questionnaire with sociodemographic data and questions concerning the care context, neuropsychiatric symptoms, caregiver burden, and depressive symptoms. Results: Results revealed that 95% of older adults had at least one neuropsychiatric symptom, with the most common being: apathy, anxiety, and depression. Among the 12 neuropsychiatric symptoms investigated, 10 were significantly associated with caregiver burden, while 8 showed significant correlations with depressive symptoms. Conclusions: Neuropsychiatric symptoms were related to caregiver burden and depressive symptoms. In addition to the older adult with AD, the caregiver should receive care and guidance from the health team to continue performing quality work.

Evaluation of Family Caregiver Burden among COVID-19 Patients

Background: Coronaviruses are a large group of viruses from the Coronaviridae family. Not only do the coronaviruses disrupt patients' lives, but they also affect caregivers. This study aimed to assess the burden of family caregivers of COVID-19 patients discharged from a hospital in eastern Iran. Materials and Methods: A descriptive cross-sectional study was conducted with 210 family caregivers of COVID-19 inpatients and outpatients. A total of 210 COVID-19 patients referred to 22nd-Bahman Hospital of Khaf from March 2020 to June 2020 were selected via simple randomization. Data were collected using the Zarit caregiver burden scale and a demographics form. Results: The care burden scores were 83.2% and 80.9% in the family caregivers of inpatients and outpatients, respectively, indicating the severity of care burden for COVID-19 patients. The mean scores of objective, subjective, and subjective-objective caregiver burden were significantly higher in male family caregivers and caregivers of inpatients than in female caregivers and caregivers of outpatients [p <0.01]. Conclusion: The high objective, subjective, and subjective-objective caregiver burden in family caregivers is an alarm for mental health policy-makers. Therefore, healthcare managers need to consider plans and measures to reduce the care burden of family caregivers of COVID-19 patients.