Caregiving Intensity and Psychosocial Impact of COVID-19 in Dementia and Non-Dementia Caregivers

COVID-19 has adversely impacted the well-being of informal caregivers (CG) due to infection risk, changes to the home environment, and changes to resource availability. CG of persons living with dementia (PLWD) may be especially vulnerable due to the intensity of care provided. We compared CG activities and well-being among CG who did and did not care for PLWD during COVID-19. We conducted an anonymous online survey from April 2020-present. Respondents self-identified as 18+ years and CG to a child or adult with mental health or medical conditions. CG answered questions regarding hours of care provision and caregiving activities, and completed measures of CG burden (Zarit Burden Inventory-4), loneliness (UCLA Loneliness Scale), depressive symptoms (Patient Health Questionnaire), and anxiety (Generalized Anxiety Disorder-2). Of the 258 respondents within the United States, 86 cared for PLWD (33%; 88% female; 56±12 years) while 172 did not (66%; 87% female; 49±14 years). Compared to non-dementia CGs, more CGs of PLWD provided 40+ hours of caregiving/week (36% vs. 49%, p<.05), performed more caregiving activities (8.5 vs. 10.5, p<.01), and assisted with more activities of daily living (55% vs. 73%, p<.01). Compared to non-dementia CG, more dementia CG reported CG burden (53% vs. 67%; p<.05) and loneliness (7.3 vs. 9.1, p<.05). No differences in depressive symptoms or anxiety were found. Results suggest that existing needs of CG of PLWD may be exacerbated by the stressors and concerns of the pandemic, necessitating higher levels of support.

Predicting Caregiver Reactions to Challenging Behaviors in the Context of Dementia

Challenging behaviors exhibited by people living with dementia have been associated with a variety of negative outcomes including greater caregiver burden, nursing home placement, and lower quality of life. Although there has been considerable research on psychological and behavioral changes in dementia, little research has explored family caregiver reactions to these changes and what caregiver characteristics are associated with stronger emotional reactions. This research examined the relationship between established indicators of caregiver mental health (depression, burden, grief, well-being) and caregiver reaction scores on the Revised Memory and Behavior Problems Checklist (RMBPC). The sample consisted of 76 family caregivers for people living with dementia, aged 25 to 93, who participated in a study on caregiver burden and grief. Multiple regression was used to predict RMBPC caregiver reaction scores from the Zarit Burden Inventory, Geriatric Depression Scale, Ryff Psychological Well-Being Scale, and Anticipatory Grief Scale while controlling for RMBPC total behavior frequency scores. RMBPC total behavior frequency scores and Zarit Burden Inventory were significant predictors of caregiver reaction scores (F(2,74) = 87.559, p < .001, R2 = .703). More frequent, challenging behaviors were associated with more distressing reactions and higher caregiver burden also predicted more distress on the RMBPC reaction scores. Psychological well-being was associated with lower reactions at the bivariate level but was not significant in the full regression model. Future research is needed to better understand these relationships and implement this knowledge to benefit family caregivers.

The psychological burden in survivors of stroke and caregivers dyads in Kinshasa (Democratic Republic of Congo): a cross-sectional study

Background: Stroke exposes the patients and the caregivers to the development of burden in terms of health, economic and social costs. Few studies have focused on the relationship between the psychological burden and the level of disability in stroke survivors and caregiver dyads. Methods: This cross-sectional study aimed at determining the psychological burden of stroke in patients and caregivers in Kinshasa. 85 stroke survivors and caregivers dyads were screened using the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, and the Rankin’s modified Scale to determine respectively the depression, the anxiety in stroke survivors as well as the caregivers’ psychological burden. Results: Up to fifty percent of survivors of stroke had a severe disability, associated with a high risk of the occurrence of the psychological burden. Nearly eighty-five percent of caregivers showed a moderate psychological burden. The stroke survivors developed more depression than anxiety. Caregivers developed more likely anxiety and depression than stroke survivors. Conclusions: There is a positive relationship between the psychological burden in caregivers and the level of disability in stroke survivors far from the acute phase of the stroke. Healthcare providers working with the survivors of stroke should assess for anxiety and depression in caregivers.

How are Informal Caregivers Adapting to COVID19? Preliminary Results of an Online Survey

COVID19 may disrupt informal caregivers’ (CG) ability to support their care recipients (CR) but little is known how caregivers adapt. A 10-minute, anonymous, online survey with no geographic restrictions was fielded April-August 2020. Two screening items ensured that the respondents were at least 18y and self-identified as a CG. This English-language survey assessed: sociodemographics; reactions to COVID19; changes in CG responsibilities and abilities; depression (Patient Health Questionnaire, PHQ-2); CG burden (Zarit Burden Inventory, ZBI-4); and anxiety (Generalized Anxiety Disorder, GAD-2). Univariate analyses determined the proportion of those who screened positive on PHQ-2 (cutoff=3), GAD-2 (cutoff=3), and ZBI-4 (cutoff=8). Of the 314 respondents, 74% lived in USA; 73.5% of caregivers and 48.2% CR were women. While 63.4% were married, only 28% cared for their spouse. CG mainly cared for adults (83%), and reported that 75.0% of their CR had 2+ conditions. 49.6% CG provided >20h of care/wk. Since COVID19, 53% reported an increase in CG responsibilities; 28.0% noted a decrease in income. Many CG screened positive on the ZBI-4 (48.4%), GAD-2 (30.9%), and PHQ-2 (26.8%). 74% worried about contracting COVID19 at least some of the time. 35.0% noted limits to performing all caregiving tasks when they (N=34) or their CR (N=57) were asked to self-isolate/quarantine. 163 (51.9%) CG noted spending less time with their CR, of which 46.4% used alternate means (e.g., telephone calls). Preliminary results show that a plurality of CG had changes in their responsibilities and abilities during COVID19. A sizable proportion also reported poor well-being.

Elderly caregivers of other elderly living with and without children: burden, optimism and coping strategies

This article aims to compare level of burden, optimism and coping strategies among elderly caregivers of other elderly individuals who reside with and without children. A cross-sectional study was with a sample of 301 elderly caregivers of elderly Brazilians seen in primary health care. Among the 301 caregivers interviewed, 44 resided with children and 257 did not. Evaluations involved the administration of the Zarit Burden Inventory, Spirituality Scale (optimism) and Coping Strategies Inventory. Either the Student’s t-test or the Mann-Whitney U-test was used for the comparisons between the two groups. Burden level was significantly higher among elderly caregivers who resided with children (p = 0.01). No significant differences were found with regard to optimism. Elderly caregivers who did not reside with children reported significantly greater use of coping strategies focused on the expression of negative emotions (p < 0.01), religiosity (p < 0.01) and the inhibition of negative emotions (p = 0.01). The elderly caregivers of other elderly individuals who resided with children had a higher level of burden and used coping strategies less than those who did not reside with children.

The experience of patients and family caregivers during Hospital-at-Home in France

Background Public health policies tend to generalize the use of Hospital-At-Home (HAH) to answer the growing will of patients to be treated or to die at home. HAH is a model of care that provides acute-level services in the patient’s home with the interventions of variety of health care professionals. Relatives participate also in the interventions by helping for sick patients at home, but we lack data on the care of patients and caregivers in HAH. The aim of this study was to make an inventory of the experiences of patients and family caregivers in HAH. Methods The research was qualitative using nineteen semi-directed interviews from nine patients and ten caregivers of one care unit of Greater Paris University Hospitals’ HAH, and the grounded theory was used to analyze the transcripts. Caregivers were also asked, after the interview, to fill in the Zarit Burden Inventory. Results HAH remained mostly unknown for patients and caregivers before the admission proposition and the outlook of being admitted in HAH was perceived as positive, for both of them. Caregivers had a versatile role throughout HAH, leading to situations of suffering, but also had sources of support. The return home was considered satisfactory by both caregivers and patients, related to the quality of care and increased morale despite HAH’s organizational constraints. We noted an impact of HAH on the relationship between the patient and the caregiver(s), but caused by multiple factors: the fact that the care takes places at home, its consequences but also the disease itself. Conclusions HAH strongly involved the patient’s caregiver(s) all along the process. HAH’s development necessitates to associate both patients and caregivers and to take into account their needs at every step. This study highlights the need to better assess the ability of the caregiver to cope with his or her relative in HAH with acute and subacute care at home. Key messages Health care services need to take into account family caregivers. Hospital at home services should be developped worldwide.

Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis

Background. Home care for patients with Multiple Sclerosis (MS) relies largely on informal caregivers (ICs).Methods. We assessed ICs objective burden (Resource Utilization in Dementia measuring informal care time (ICT)) and ICs subjective burden (Zarit Burden Inventory (ZBI)).Results. ICs (N=99) were spouses (70%), mean age 52 years, assisting disabled patients with a mean EDSS (Expanded Disability Status Scale) of 5.5, with executive dysfunction (mean DEX (Dysexecutive questionnaire) of 25) and a duration of MS ranging from 1 to 44 years. Objective burden was high (mean ICT = 6.5 hours/day), mostly consisting of supervision time. Subjective burden was moderate (mean ZBI = 27.3). Multivariate analyses showed that both burdens were positively correlated with higher levels of EDSS and DEX, whereas coresidency and IC’s female gender correlated with objective burden only and IC’s poor mental health status with subjective burden only. When considering MS aggressiveness, it appeared that both burdens were not correlated with a higher duration of MS but rather increased for patients with severe and early dysexecutive function and for patients classified as fast progressors according to the Multiple Sclerosis Severity Score.Conclusion. Evaluation of MS disability course and IC’s personal situation is crucial to understand the burden process and to implement adequate interventions in MS.

Cultural differences are reflected in variables associated with carer burden in FTD: A comparison study between India and Australia

ABSTRACT There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background. Objective: The present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country. Methods: Data of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained. Results: Overall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia. Conclusion: This study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone.

Relative importance of patient disease indicators on informal care and caregiver burden in Alzheimer's disease

ABSTRACTBackground: Cognition, abilities in activities of daily living (ADL), and behavioral disturbances in patients with Alzheimer's disease (AD) all influence the number of hours informal caregivers spend caring for their patients, and the burden caregivers experience. However, the direct effect and relative importance of each disease severity measure remains unclear.Methods: Cross-sectional interviews were conducted with 1,222 AD patients and primary caregivers in Spain, Sweden, the U.K. and the U.S.A. Assessments included informal care hours, caregiver burden (Zarit Burden Inventory; ZBI), cognition (Mini-mental State Examination; MMSE), ADL-abilities (Disability Assessment for Dementia scale; DAD), and behavioral symptoms (Neuropsychiatric Inventory Questionnaire; NPI-severity).Results: Multivariate analyses of 866 community-dwelling patients revealed that ADL-ability was the strongest predictor of informal care hours (36% decrease in informal care hours per standard deviation (SD) increase in DAD scores). Severity of behavioral disturbances was the strongest predictor of caregiver burden (0.35 SD increase in ZBI score per SD increase in NPI-Q severity score). In addition, the effect of ADL-abilities was, although attenuated, not negligible (0.28 SD increase in ZBI score per SD increase in DAD score). Decreasing cognition (MMSE) was associated with more informal care hours and increased caregiver burden in univariate, but not in adjusted analyses.Conclusions: For patients residing in community dwellings, the direct influence of patients’ cognition on caregiver burden is limited and rather mediated by other disease indicators. Instead, the patients’ ADL-abilities are the main predictor of informal care hours, and both ADL-abilities and behavioral disturbances are important predictors of perceived caregiver burden, where the latter has the strongest effect. These results were consistent across Sweden, U.K. and the U.S.A.