A Comparison of Caregiver Burden for Different Types of Dementia: An 18-Month Retrospective Cohort Study

BackgroundThis study aimed to elucidate the influence of dementia etiologies on the degree of caregiver burden and determine which factors predict a high caregiving burden.MethodsThis 18-month retrospective cohort study enrolled 630 patients and their caregivers from the Dementia Center of Changhua Christian Hospital. The care team performed face-to-face interviews every 6 months, for 18 months from when a diagnosis of dementia was made. The primary outcome was the change in Zarit Burden Interview (ZBI) scores. Generalized estimating equations were used for the longitudinal data analysis.ResultsParticipants with Lewy body disease (LBD) had a significantly higher caregiving burden compared with those with Alzheimer's disease (AD) (β = 3.83 ± 1.47, Wald = 6.79, p = 0.009) after adjusting for patient and caregiver features. Caregivers of mixed-type dementia and frontotemporal dementia (FTD) experienced a greater burden than caregivers of AD, at 6- and 18-month follow-up. Patients with more severe dementia, neuropsychiatric symptoms, being cared for by more than two caregivers, or utilizing social resources were associated with higher ZBI scores; the depressive mood of caregiver also predicted higher ZBI scores.ConclusionThis longitudinal study demonstrated that caregiver burden was influenced by the underlying dementia etiology of patients. The dementia care team should provide personalized education and transfer patients and caregivers to appropriate resources, especially for high-risk populations.

Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (H&Y) stage IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of caregiver burden were the most common, i.e., items: “feel guilty if not there (71% affirmed)”, “the situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, male patient gender (p = 0.007), better cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner (p = 0.022) were associated with better caregiver QoL. Multivariable linear regression analyses identified better cognition (p = 0.004) and male patient gender (p = 0.035) as independently associated with better informal caregiver QoL. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers in late stage PD.

Neuropsychiatric Symptoms in Parkinson’s Disease Patients Are Associated with Reduced Health-Related Quality of Life and Increased Caregiver Burden

Parkinson’s disease (PD) is a progressive neurodegenerative disorder resulting in reduced health-related quality of life (HR-QoL) of people with PD (PwP) and their caregivers. Furthermore, there is an accumulating burden on caregivers of patients in advanced stages of the disease. In previous studies, motor- and non-motor-symptoms of PwP have been identified to contribute to reduced HR-QoL and an increased caregiver burden. This cross-sectional observational study aimed to study the influence of neuropsychiatric symptoms measured with the Scale for Evaluation of Neuropsychiatric Disorders in Parkinson’s Disease (SEND-PD) questionnaire on the HR-QoL of PwP, as well as the caregiver burden. Analyses revealed a significant association between SEND-PD subscale mood/apathy and reduced HR-QoL in PwP, measured by the Parkinson’s disease quality of life questionnaire (PDQ-8) (p < 0.001). Furthermore, mood/apathy was significantly correlated with caregiver burden (p = 0.001) in the multiple linear regression analysis. Hence, neuropsychiatric symptoms were found to have a profound impact on the HR-QoL of PwP, as well as on caregiver burden. Since neuropsychiatric symptoms were one of the main predictors for caregiver burden, physicians of PwP should treat these symptoms to stabilize caregiver burden, as well as HR-QoL in PwP and their caregivers.

Caregiver burden among family members of patients diagnosed with cancer in Jimma medical center oncology unit, south west Ethiopia.

Background Cancer is a type of disease defined by uncontrolled growth and spread of abnormal cells, which can result in death. Globally, around 25 million people are surviving with it. The burden of cancer is growing in developing countries and it frequently comprises patient’s vitality. In addition, it has emotional, economical, physical and psychological burden on family, friends, significant others, community and other social resource. Objective To assess caregiver burden of cancer patients in Jimma medical center oncology unit, South west Ethiopia. Method An institutional based cross-sectional study design was employed. The study was done on 141 respondents using simple random sampling. A pretested semi structured interviewer administered questionnaire was used to collect the data. The collected data was entered in to EPI data version 3.1 then transferred to SPSS version 23 for data analysis. Multivariable logistic regression model was fitted, Adjusted Odds Ratio (AOR) at 95% confidence interval and p-value <0.05 were estimated to determine statistically association between predictors and outcome variables. Results The data were collected from the total of 141 respondents with 100% response rate. The mean ±SD age of cancer patients and care givers were 46.4 ±12.406 and 32 ± 11.23 years, respectively. The general level of caregiver burden in this study was mild to moderate (71.6%) with ZBI total score of 30 and by using CBI114 (80.9%) had some burden. Caregivers whose their age is greater than 40 years were 4.01 times more likely have high burden than those age between 20-40 old age [AOR=4.01, 95%CI (1.58, 10.17)]. Conclusion The study disclosed a moderate level of caregiver burden among family caregivers.

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.

Perceived burden and family functioning among informal caregivers of individuals living with schizophrenia in Tanzania: a cross-sectional study

Background Globally, families play a critical role in providing care and support for persons living with schizophrenia. It is important to identify potentially modifiable factors that influence perceived caregiver burden in order to properly address the needs of caregivers. This is especially relevant in low-resource settings where psychiatric services are scarce and interventions could be most effective if targeted to both the individual living with schizophrenia and their caregiver. This study examines correlates of perceived burden among informal caregivers of individuals with schizophrenia in Tanzania, in particular, the association between burden and caregiver-reported family functioning. Methods This study used baseline data from an individually randomized controlled trial with 65 pairs of individuals with schizophrenia and their informal caregivers in Dar es Salaam and Mbeya, Tanzania. Caregiver burden was measured using the Burden Assessment Scale. Univariable and multivariable regression analyses were performed to determine the relationship between caregiver burden and family functioning and to explore other correlates of burden. Results Sixty-three percent of caregivers reported experiencing high burden as a result of caring for a relative with schizophrenia. Multivariable regression analyses revealed that poor family functioning and the caregiver being employed were associated with high caregiver burden, while higher levels of hopefulness in the caregiver was associated with low caregiver burden. Conclusion Caregivers who were employed, reported poor family functioning, and/or had low levels of hopefulness were more likely to perceive high caregiver burden. Future interventions aiming to reduce caregiver burden may benefit from improving family functioning and nurturing hope among caregivers of individuals living with schizophrenia. Policies and programs should be cognizant of the needs of caregivers that work in addition to providing care for a relative with schizophrenia in order to better support them.

Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?

Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (p = 0.004) and without burdening symptoms (p = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; p = 0.002) and stronger caregiver burden (p = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures.

Burden of Insomnia and Sleep Disturbances and the Impact of Sleep Treatments in Patients with Probable or Possible Alzheimer’s Disease: A Structured Literature Review

Background: Sleep disturbances are frequent in Alzheimer’s disease (AD). This review summarizes the impact of sleep disturbances on AD patients and their caregivers and the effects of currently available sleep therapies. Methods: Published studies (January 1985–March 2020) assessing the burden associated with insomnia/sleep disturbances in the AD population and insomnia treatment effects were identified by searching PubMed, Embase and Cochrane Library and screened against inclusion criteria. Findings: This review included 58 studies which assessed patient and caregiver burden, institutionalization, and insomnia treatments in AD patients with sleep disturbances. Sleep disturbances were associated with worse cognition, functional ability, and behavioral and neuropsychological functioning, including increased depression and anxiety. Health status and quality of life of both patients and caregivers were reduced in the presence of sleep disturbances, with caregiver burden driven largely by disruptive nocturnal behaviors including nighttime awakenings and wanderings. Sleep disturbances were also associated with institutionalization. Although significant associations between sleep problems and clinical outcomes were apparent, there was generally no control for other influencing factors (e.g. cognitive status). With respect to insomnia treatments, bright light, and behavioral therapies as well as drugs such as trazodone, risperidone and suvorexant showed some promise in AD patients, but studies were primarily small and limited data were available, particularly in regard to insomnia treatment effects on associated clinical burden. Interpretation: Sleep disturbances are a significant problem for AD patients and caregivers. They are associated with behavioral and psychological problems and cognitive decline and impose a burden on caregivers, but remain poorly characterized and under-researched. As the global population is aging and AD is on the rise, data from larger, prospective trials are required to fully understand the clinical correlates of sleep disturbances and the impact of insomnia treatments on AD patients and their caregivers.

Sleep Quality Among Informal Caregivers During the COVID-19 Pandemic: A Cross-Sectional Study

Sleep is an integral component of health. The impact of the COVID-19 pandemic on sleep quality among informal caregivers, individuals who provide unpaid care or assistance to family members or friends, assisting older adults is not well understood. Therefore, informal caregivers in the United States providing care for individuals aged 50+ were recruited via Amazon’s Mechanical Turk, an online platform for enrolling study participants into social and behavioral science research, to complete an online survey. The sample of informal caregivers ( n = 835) was 69% male and 55% non-Hispanic. Multivariable linear regression models were constructed to assess the associations between sleep disturbance scores (SDS) and sleep-related impairment scores (SIS) and caregiving-related measures (hours caregiving/week, length of time spent caregiving, and caregiver burden), demographics, and region of the United States. The analysis determined that Black (β = 2.6, 95% CI [−4.3, −0.9]) and Asian informal caregivers (β = −1.8, 95% CI [−3.4, −0.3]) had lower mean SIS than White caregivers, the referent group. In addition, increasing caregiver burden was associated with increased SDS (β = 0.8, 95% CI [0.6, 1.0]) and SIS (β = 1.3, 95% CI [0.7, 1.6]). In conclusion, higher caregiver burden was associated with higher SIS and SDS, suggesting that informal caregivers' sleep should be assessed, and when needed interventions should be offered.