American Indian Family Caregivers’ Experiences with Helping Elders

In recent years, a vast literature has accumulated on the negative effects on family caregivers of providing care to elders, while relatively little research has explored caregiving as a positive experience. Only a handful of studies have examined any aspect of informal caregiving among American Indians. This mixed methods study explores the negative and positive aspects of providing elder care among 19 northern plains American Indian family members. These caregivers described low levels of burden and high levels of reward, attributable to cultural attitudes toward elders and caregiving, collective care provision, strong reciprocal relationships with elders, enjoyment of elders, and relatively low levels of care provision. Caregiving manifested as part of a complex exchange of assistance rather than a unidirectional provision of assistance from the family member to the elder. That caregiving emerged as such an overwhelmingly positive experience in a community faced with poverty, alcohol disorders, trauma, and cultural traumatization is testimony to the important roles that elders often continue to play in these communities.     

Caregiver burden and depressive symptoms: analysis of common outcomes in caregivers of elderly patients

Despite widespread use of caregiver burden and depressive symptoms in caregiving research, the relationship between these two concepts and the way in which burden and depressive symptoms are affected are not clear. METHODS: The authors used structural equation modeling with an inception cohort of 488 family caregivers to examine the relationship between care recipients' mental and functional status and recency of care demands and caregivers' burden and depressive symptoms. RESULTS: Care recipients' mental and functional status and recency of care demands predicted caregiver burden; burden, in turn, was nearly significant in predicting depressive symptoms. Care recipients' mental status and recency of care demands had a near significant indirect effect on caregiver depressive symptoms. There were no significant direct paths between care recipients' mental status, functional status, recency of care demands, and caregivers' depressive symptoms. DISCUSSION: Health care practitioners should assist caregivers with new care demands stemming from care recipients' mental and functional status to decrease burdens and should monitor caregivers with higher levels of burden for the development of depressive symptoms.     

Dimension-specific burden of caregiving among partners of rheumatoid arthritis patients

OBJECTIVES: To assess subjective caregiver burden among partners of rheumatoid arthritis (RA) patients and to identify partner and patient variables and objective caregiver burden related to subjective caregiver burden. METHODS: In 2001, 134 patients diagnosed with RA and their caregiving partners participated in a postal questionnaire survey. Information was gathered on age, gender and health problems of patient and partner, disease duration of the patient, objective caregiver burden and subjective caregiver burden of the partner (using the multidimensional Caregiver Reaction Assessment). Correlation coefficients were computed between the subjective caregiver burden dimensions. Multivariate analyses were performed to identify variables that explained the variation in subjective burden. RESULTS: Partners of RA patients derived, on average, a high level of self-esteem from giving care. Negative subjective caregiver burden was to a large degree caused by a disrupted schedule and to a smaller degree by a lack of family support, financial problems and loss of physical strength. Problems of the partner with mobility or with pain/discomfort and problems of the patient with self-care activities and activities of daily life had the largest impact on negative levels of subjective caregiver burden. CONCLUSIONS: Health parameters of the patient and partner have a considerable predictive value for the development of high levels of subjective burden in partners of RA patients. Support strategies should be developed for partners of RA patients, and should focus especially on reducing the burden caused by a disrupted schedule, and simultaneously on increasing the focus of caregivers on the positive aspects of caregiving.     

Factors affecting burden of South Koreans providing care to disabled older family members

This study examined the determinants of caregiving burden among South Koreans who care for their disabled older family members. A sample of 1000 primary caregivers taken from the Comprehensive Study for Elderly Welfare Policy in Seoul, South Korea was analyzed. Independent variables included the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment among care recipients, care recipients' functional abilities, financial adequacy and caregivers' degree of social support. Hierarchical regression was used to predict the levels of caregivers' burden. Similar to western care providers, South Korean caregivers who were in poor health and who had little informal social support, inadequate financial resources and more weekly caregiving hours were more likely to experience intense caregiving burden. Burden was also positively related to the functional and cognitive disabilities of care recipients. The results of this study indicate that certain aspects of caregiving are unique to South Koreans. Daughters-in-law were the most common caregiver within the sample which indicates that South Korean eldercare is non-consanguineous. Identifying predictors of South Korean caregivers' burden promotes a more comprehensive understanding of cultural experiences in caring for older adults.     

Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis

OBJECTIVE: To improve understanding of the nature and magnitude of the burden of informal care and also to indicate important areas for improving the current ways in which informal care is investigated. METHODS: Information on objective burden (such as care tasks performed and time investment), subjective burden (using the Caregiver Reaction Assessment instrument and a self-rated burden score), and quality of life (using the EuroQoL instrument) were collected in a postal questionnaire of 153 informal caregivers who provide care for rheumatoid arthritis (RA) patients. RESULTS: Caregivers had been caring for the RA patients on average for >11 years, reflecting the chronic nature of RA. They provide a substantial amount of care (27.4 hours per week) and are moderately strained (24.6 on the self-rated burden scale). Caregivers are relatively healthy on average but caregivers of more severe RA patients are relatively unhealthy, which may indicate health losses due to caregiving. CONCLUSION: Informal care can be burdensome in the context of RA. More information may help assist informal caregivers in caring for RA patients and help to avoid health problems and high subjective burden.     

Predicting caregiver burden and depression in Alzheimer's disease

OBJECTIVES: The purpose of this study was to investigate the predictors of caregiver burden and depression, including objective stressors and mediation forces influencing caregiving outcomes. METHODS: This investigation is based on the 1994 Canadian Study of Health and Aging (CSHA) database. Participants were 613 individuals with dementia, living in either the community or an institution, and their informal caregivers. Participants for the CSHA were identified by screening a large random sample of elderly persons across Canada. Structural equation models representing four alternative pathways from caregiving stressors (e.g., functional limitations, disturbing behaviors, patient residence, assistance given to caregiver) to caregiver burden and depression were compared. RESULTS: The data provided the best fit to a model whereby the effects on the caregiver's well-being are mediated by appraisals of burden. A higher frequency of disturbing behavior, caring for a community-dwelling patient, and low informal support were related to higher burden, which in turn led to more depressive symptomatology. Caregivers of patients exhibiting more disturbing behaviors and functional limitations received less help from family and friends, whereas those whose care recipients resided in an institution received more informal support. DISCUSSION: Our findings add to the preexisting literature because we tested alternative models of caregiver burden using an unusually large sample size of participants and after overcoming methodological limitations of past research. Results highlight the importance of the effective management of disturbing behaviors, the provision of formal services for caregivers with highly impaired patients and no informal support, and the improvement of coping skills in burdened caregivers.     

My parent--not myself. Contrasting themes in family care

We studied 100 adult child caregivers providing care to dependent parents and found that although the vast majority supported family care for older persons in general and their own parent in particular, 46% did not want family care for themselves if they became dependent. For many the contrast between their general statements supporting care of parents and eschewing it for themselves was quite sharp. Caregiver variables significantly associated with not wanting family care for self included age, conflict with relatives over caring, caregiving burden, number of caregiving tasks performed, poorer mental health, and number of years has provided care. Caregivers not wanting family care for self were also more likely to consider placing their parent in a nursing home. Our data reveal contrasting themes in caregiving that may affect caregiver well-being and burden, and that may have implications for the future care of dependent older persons.     

Effects of care burden on the life of caregivers of the elderly: A mixed-method study model

Determining the care burden of elderly caregivers in the early period allows for early intervention to protect them from the negative physical, social, and psychological effects of care. This mixed-method study aimed to determine the burden levels of caregivers of elderly individuals and evaluate their opinions on the difficulties they experienced while caregiving. This study was conducted with caregivers of 89 elderly people who were determined to need care by visiting the homes of elderly people aged 65 years and over living in Famagusta. While the KATZ index of independence in activities of daily living and the Zarit Burden Interview tool were used to collect quantitative data, face-to-face interviews were conducted with 28 selected participants to collect qualitative data. The mean age of the caregivers was 52 ± 12 years; they were mostly female spouses/children/relatives, and 29.2% had moderate-to-severe care burden perceptions. The perception of caregiver burden levels increased as the level of dependency of elderly individuals and the duration of caregiving increased. Considering that caregiving burden affects every aspect of caregivers’ lives, it should be assessed regularly. To reduce care burden, it is recommended to expand home care services and short-term care facilities, use health technologies for continuous distance education and counseling in elderly care, and financially support caregivers who cannot work due to the responsibilities of providing elderly care.     

Relationship between caregiver burden and health-related quality of life

This study tested the cross-sectional relationship between caregiver burden and health-related quality of life (HRQOL) among 1,594 caregivers of veterans identified to qualify for formal home care. A two-stage model found that familial relationship, coresidence, and low income predicted objective burden. Coresidence also predicted subjective burden, whereas being African American was protective. In the full model, spousal relationship, low income, and burden were associated with poor HRQOL scores. Total variance explained in HRQOL ranged from 14% to 29%, with objective burden contributing more than subjective burden. These findings suggest a direct effect of objective burden on caregiver HRQOL, indicating a need among caregivers for assistance in caring for disabled family members.     

Correlates of Positive Aspects of Caregiving Among Family Caregivers of Patients with Acute Myeloblastic Leukaemia

To evaluate the positive aspects of caregiving and its sociodemographic and clinical correlates in family caregivers of patients with Acute Myeloblastic Leukaemia (AML). A total of 30 caregivers of the patients with AML were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE), Family Burden Interview (FBI) and Schedule and Caregiver Strain Index (CSI). On the SPACE, the mean score was highest for the domain of motivation for the caregiving role, followed by the domain of ‘caregiving personal gains’, ‘caregiver satisfaction’ and least score was seen in the domain of ‘self-esteem and social aspect of caring’. All the SPACE domains were negatively correlated with financial burden, disruption of routine family activities, disruption of family interaction, physical health and subjective burden domains of FBI. Effect on physical health of others domain of FBI correlated negatively with all domains of SPACE except ‘self esteem and social aspect of caregiving’. FBI total objective burden was negatively correlated with motivation for caregiving role, caregiver satisfaction and total SPACE score. All SPACE domains were negatively correlated with adaptation and inconvenience domains and total CSI score. Lower level of positive caregiving experience is reported by caregivers who experience high level of caregiver burden.     

Caregiving in the Philippines: a quantitative survey on adult-child caregivers' perceptions of burden, stressors, and social support

This study aims to describe the present caregiving situation of Filipino adult-child caregivers (CGs) particularly aiming to identify the predictors of CG burden and to assess the effect of social support on stressors and perception of burden. A cross-sectional survey employing face-to-face interviews with 193 adult-child CGs in Davao City, Philippines, measured the perception of burden using the Cost of Care Index (CCI) by Kosberg and Cairl. Results indicated the majority were daughter CGs living with their elderly parents, who were receiving high levels of informal social support. A moderate to high level of burden perception (mean+/-S.D. score of 47.0+/-9.1) was found among respondents. CGs with higher educational attainment showed low burden perception. However, higher family income and higher State-Trait Anxiety Inventory (STAI) anxiety scores were associated with higher burden perception. Also, longer caregiving hours, a male care recipient (CR), and the presence of CR's memory and behavior problems predicted higher CG burden. The interaction between stressors and perceived burden showed that social support provided a buffering effect for CGs experiencing higher burden perception. This suggests that respite and support resources including community-based counseling and education programs to assist CGs in dealing with stress may positively contribute to reduce burden.     

Caregiver burden and outcomes of caregiving of spouses of patients who undergo coronary artery bypass graft surgery

BACKGROUND: Patients who undergo coronary artery bypass graft surgery often rely on spouses for care during recovery. Although often meaningful, caregiving may be stressful and affect spouses' ability to provide care to the patient. OBJECTIVES: The purpose of this study was to compare burden and caregiving outcomes across three groups of spouses. Spouse groups varied by the interval of time between surgery and follow-up, which may have been 3, 6, or 12 months. METHODS: This cross-sectional comparative study recruited a convenience sample of 166 spouses on the basis of a power analysis. A total of 166 spouses completed caregiver surveys on burden and other caregiving outcomes. RESULTS: Total, objective, and subjective burden levels were low to moderate. Although no burden differences were found between groups, men had higher total burden but more positive caregiving outcomes. Future outlook and social activities were less positive in the 6-month group. Burden levels were not lower, nor were caregiving outcomes higher, in the 12-month group, suggesting a steady caregiving demand across the first year after coronary artery bypass graft surgery. CONCLUSION: Longitudinal investigations are needed to understand burden and caregiving outcomes over time and the impact of burden on spousal and patient recovery outcomes.     

Caregiver burden among Japanese informal caregivers of cognitively impaired elderly in community settings

Because dementia is a progressive disease, formal long-term care providers and care managers need information on how the severity of cognitive impairment affects caregiver burden in order to better assist family caregivers. However, research to guide care providers in behavioral symptom-management is not well developed. The purpose of this study was to examine the relationship between dementia status and burden of family caregivers. The subjects were 1875 community-dwelling elderly eligible for public long-term care insurance. The data we used in this analysis included the caregivers’ and dependents’ characteristics. The main outcome was subjective caregiver burden assessed by the Japanese version of the Zarit Burden Interview (J-ZBI). A total of 1559 pairs of dependents and caregivers were included in the analysis. The pairs were sorted into three mutually exclusive categories: no dementia, mild dementia, and severe dementia. Two hundred sixty-one dependents had severe dementia, and 725 had mild dementia. Although differences were found among the dementia categories in levels of caregiver burden according to the J-ZBI before and after adjusting for these baseline variables, the odds ratios equal nearly 1. The present study shows that severity of dementia is not associated with caregiver burden in Japan.     

Effect of race on cultural justifications for caregiving

OBJECTIVE: Our objective in this study was to explore the effects of caregiver characteristics on cultural reasons given for providing care to dependent elderly family members. METHODS: The sample included 48 African American and 121 White caregivers. Using multivariate analyses, we used caregiver characteristics (e.g., race, gender, education) to predict scores on the Cultural Justifications for Caregiving Scale (CJCS). RESULTS: Confirmatory factor analysis showed that the CJCS was appropriate for both African American and White caregivers. African Americans had stronger cultural reasons for providing care than Whites, education levels were inversely related to CJCS scores, and the influences of gender and age on cultural reasons were moderated by race. Compared to females, African American males had lower CJCS scores, whereas White males had higher CJCS scores. Younger as compared to older White caregivers had higher CJCS scores. DISCUSSION: This study supports the long-standing cultural tradition of African American families providing care to dependent elders. Cultural reasons for caregiving need to be interpreted within the context of race and gender socialization. Social roles, such as husband or wife, son or daughter, can also help determine how individuals within a particular cultural group experience cultural expectations and obligations. Information from this study can inform culturally appropriate caregiving interventions.     

Mediating effect of social support on the relationship between resilience and burden in caregivers of people with dementia

ObjectiveThis study examined different predictive factors of burden in a sample of family caregivers of patients with dementia (PWD). In particular, the influence of social support and resilience on burden was tested, considering potential mediation effects.MethodsA total of 283 primary and family caregivers in Spain were evaluated using a standardized protocol to assess sociodemographic characteristics, clinical state of PWD and specific variables of caregiving and care providers.ResultsThe role of caregiver of PWD was more common in women, reporting significantly higher levels of burden than men. Resilience and social support accounted for most of the variance in burden. Furthermore, social support partially mediated the relationship between resilience and burden in caregivers.ConclusionsCaregivers’ resilience and social support are protective factors against burden in caregivers of PWD. Both factors should be considered for tailored interventions aimed at reducing the health costs of burden in this population.     

Activities of daily living function and neuropsychiatric symptoms of people with dementia and caregiver burden: The mediating role of caregiving hours

ObjectiveDue to the presence of neuropsychiatric behaviors and the decreased ability for activities of daily living (ADLs), family caregivers experience high burden levels in caring for people with dementia (PWD). This study sought to test the mediating role of caregiving hours in association with PWDs’ ability for basic activities of daily living (BADL) function or neuropsychiatric behaviors and caregiver burden.MethodsThis study used two waves of survey data, collected between 2013 and 2016, from 186 PWD–caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan. Two sets of multiple linear regression models were used to analyze the relationships between the changes in patients’ BADL function, patients’ neuropsychiatric behaviors, caregiving hours in ADL (including BADL and Instrumental ADL), and caregiver burden (measured using Zarit Burden Interview). Bootstrapping methods were used to detect the mediating effects of caregiving hours in ADL if the 95% confidence interval (CI) did not cover 0.ResultsCaregiving hours in BADL mediated the relationship of PWDs’ BADL function and caregiver burden (effect = −0.0137, 95% bootstrap CI = −0.0379, −0.0003). However, such mediating effects were not found in the relationship of PWDs’ neuropsychiatric behaviors and caregiver burden.ConclusionsIn order to relieve caregiver burden, respite care services for caregivers for PWD should target services that assist with PWD’s BADL.     

Predictors of caregiving satisfaction in informal caregivers of people with dementia

ObjectiveThe prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors.MethodsA stress process model was used to study caregiver's satisfaction (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver's background and context, stress-related factors, and mediators.ResultsThe regression model has an adjusted R² of 0.20, which indicates that having a consanguinity relationship with the care recipient, suffering from lower levels of subjective burden, and managing individuals with severe cognitive impairment are the most important predictors of higher caregiving satisfaction.ConclusionInterventions focused on the enhancement of the caregiving satisfaction by increasing the understanding of the disease, should be especially addressed to caregivers without a consanguinity relationship and with high levels of subjective burden, and to those managing care recipients with mild or moderate stages of dementia.     

Social support and caregiving circumstances as predictors of caregiver burden in Taiwan

Previous research has failed to consider the importance of caregiving circumstances and their impact on social support and caregiver burden. Hence, this study aimed to investigate the association between perceived and received social support and caregiver burden. This cross-sectional study was carried out on 301 family caregivers. Data was collected using structured questionnaires which included a Social Support Scale, Family APGAR (adaptation, partnership, growth, affection, resolve), and Caregiver Burden Scale. Findings showed that the caregiver burden was best predicted by two perceived and one received social support variables. Caregiver burden was likely to be higher when the caregivers had lower levels of family function and social support. Perceived social support was better at predicting caregiver burden than received social support. Our study indicates that family function has an important influence on caregiver burden. Further studies on family based interventions are needed to determine approaches for effectively reducing caregiver burden. The role of perceived social support in the health of caregivers should be further investigated as a possible protective determinant in the caring process.     

Impact on caregivers of supporting urinary function in noninstitutionalized, chronically ill seniors.

In a multivariate study of 148 caregivers of chronically ill older persons, 22% of those caring for a continent senior reported that maintaining continence was a burden, and 75% of caregivers of incontinent seniors reported it as burdensome. The burden of maintaining urinary function was associated with lack of social support, time spent providing care, and care receiver's immobility. Caregivers' depressive symptoms were associated with perceived burden from providing care for urinary function, a confused care receiver, and post-stroke support.     

结核病患儿家庭照顾者的照顾负担与生活质量现状及相关性研究

目的 了解结核病患儿家庭照顾者所承受的照顾负担和生活质量现状,并探讨两者之间的相关性,为制定系统性家庭干预措施提供参考。 方法 研究采用Zarit照顾者负担量表和家庭照顾者生活质量量表,对2017年9月至2018年3月在上海市公共卫生临床中心结核科住院的结核病患儿的家庭照顾者76名进行调查。Zarit照顾者负担量表总分0~88分,分值越高表明该照顾者负担越重,0~19分为无或很少负担,20~39分轻度负担,40~59分中度负担,60分以上重度负担。家庭照顾者生活质量量表总分16~80分,分值越高,表明照顾者生活质量越高。采用t检验、单因素方差分析、秩和检验对组间资料进行比较,采用Pearson相关分析或Spearman相关分析进行相关性检验。 结果 结核病患儿家庭照顾者照顾负担总分为(41.39±14.86)分,其中个人负担(22.58±9.10)分,责任负担(10.79±4.88)分。家庭照顾者生活质量总分为(50.46±14.25)分,4个维度得分由低到高依次为精神维度(11.61±4.53)分、心理维度(12.70±4.40)分、社会维度(13.01±3.62)分、生理维度(13.14±3.72)分。Pearson相关分析显示,照顾者照顾负担总分与生活质量总分呈负相关(r=-0.726,P<0.001),存在显著线性相关。 结论 结核病患儿家庭照顾者存在不同程度的照顾负担,将影响家庭照顾者的生活质量。