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.     

Factors influencing oral health-related quality of life (OHRQoL) among the frail elderly residing in the community with their family

The purpose of the present study was to identify factors that influence quality of life (QoL) among frail elderly individuals residing in the community, in order to improve the level of home care related to oral health. Participants were 100 pairs comprising elderly individuals requiring care and their family caregivers. Questionnaire items for the family caregivers related to demographic variables, hours spent caregiving per day, and duration of caregiving. Questionnaire items for the elderly recipients of care concerned demographic variables, activities of daily living (ADL), and cognitive status. According to bivariate analysis, oral health-related quality of life (OHRQoL) was significantly related to basic ADL, communication ADL (CADL), dysphagia risk, and duration of caregiving. From multiple regression analysis, dysphagia risk and CADL were extracted as factors influencing OHRQoL. Assessment of OHRQoL will be useful not only to detect oral health needs but also to evaluate the effect of oral health care in the elderly.     

Comparison of informal caregiving by black and white older adults in a community population

OBJECTIVES: To examine the prevalence of informal caregiving and demographic factors associated with caregiving time in older community residents and compare caregiving prevalence and time spent providing care by black and white residents. DESIGN: A cross-sectional, population-based study. SETTING: The study was conducted as part of the Chicago Health and Aging Project (CHAP) in a geographically defined community of black and white residents aged 65 and older. PARTICIPANTS: Participants were 5,924 community residents (61.4% black; 38.6% white) who answered questions about informal caregiving responsibilities during a structured interview about a broad range of health and social factors. METHODS: Data were collected during an in-home interview. Multiple logistic and linear regression models were used to examine the association between caregiving and race, gender, age, marital status, and education. RESULTS: More than 16% of residents had provided care to others during the previous 12 months, and 10.3% were currently providing care. Compared with whites, blacks were 30% more likely to be caregivers, spent almost 13 more hours each week in caregiving activities, and were more likely to assist friends. The probability of caregiving increased significantly with age for married persons, decreased with age for unmarried persons, and was lower for men compared with women. The time spent providing care each week increased significantly with age for married persons and did not differ between men and women. CONCLUSIONS: Although physicians and other healthcare providers typically view older people as the recipients of informal care, individuals older than age 65 provide a substantial amount of care to others with health problems and disability. Most research has focused on the needs of young and middle-aged caregivers, and little is known about the needs of these older caregivers. Future research should use sampling strategies that provide adequate numbers of white and non-white participants for meaningful comparisons. This will permit identification of racial and cultural differences in caregiving so that interventions can be tailored to specific groups.     

The dynamics of caregiving for a demented elder among black and white families.

Caregiving dynamics were studied in a sample of 157 Black caregivers of elders suffering from Alzheimer's disease and other dementias. By comparison with White caregivers (N = 472), there were fewer spouses and more nonspouse-nonchild caregivers among Blacks. With control exercised on background and socioeconomic variables, race differences in caregiving appraisal were found. Blacks showed more favorable scores on indices of traditional caregiving ideology, caregiving as intrusion, caregiving satisfaction, and caregiving burden. Interactions between race and background factors increased explained variance in caregiving appraisal only slightly. A cultural explanation of the more favorable appraisals of Blacks was sought in the caregiving ideology factor, but this dimension was not associated with caregiving outcomes. The overall hypothesized two-factor model was generally consistent with the observed covariance structures of both Black and White caregivers. Within both White and Black groups, caregivers who provided more care showed simultaneously more satisfaction and more burden.     

Family caregiving to elderly African Americans: caregiver types and structures

OBJECTIVES: This study identified different types of caregivers who provide care to older African Americans, the types of caregiving structures created to provide care, and the factors that help predict caregiving structures. METHODS: A community sample of 330 caregivers caring for 202 elderly African Americans was used. Multinomial logistic regression predicted what type of caregiving structure was created by families to provide care to older relatives. RESULTS: Three types of caregivers were identified: 187 primary caregivers, who were connected to 79 secondary caregivers and 49 tertiary caregivers. Fifteen tertiary-only caregivers who were not connected to other caregivers were identified. Five caregiving structures were found: (i) primary, secondary, and tertiary, (ii) primary and secondary, (iii) primary and tertiary, (iv) primary only, and (v) tertiary-only. Characteristics of care recipients were predictive of caregiving structures. DISCUSSION: Different types of caregivers with distinct roles and responsibilities provided care within defined caregiving structures to older African American family members. Caregiving structures may be individualistic (only one caregiver) or collectivist (two or more caregivers). Caregiving structure is predicted by the care recipients' conditions and situations, but not those of the primary caregiver.     

Effects of a Health and Social Collaborative Case Management Model on Health Outcomes of Family Caregivers of Frail Older Adults: Preliminary Data from a Pilot Randomized Controlled Trial

Family caregiving is an important form of informal care provided to frail, community‐dwelling older adults. This article describes a health and social collaborative case management (HSC‐CM) model that aims to optimize the support given to caregivers of frail elderly adults. The model was characterized by a comprehensive assessment to identify the caregiver's needs; a case management approach to provide integrated, coordinated, continued care; and multidisciplinary group‐based education customized to the caregiver's individualized needs. A pilot study using a randomized controlled trial study design was conducted to evaluate the effects of the HSC‐CM on caregiver burden and health‐related quality of life of family caregivers of frail elderly adults. Sixty family caregivers (mean age 61.3 ± 15.5) of frail older adults recruited from a community center for elderly adults in Hong Kong were randomly assigned to receive a 16‐week HSC‐CM intervention or usual care. Case managers who conducted a comprehensive assessment of the care dyads to identify caregiver needs using a case management approach to optimize care coordination and continuity led the HSC‐CM. These case managers served as liaisons for multidisciplinary efforts to provide group‐based education according to caregiver needs. Family caregivers who participated in the HSC‐CM had significantly greater improvement on the Caregiver Burden Index (p = .03) and on the Medical Outcomes Study 36‐item Short‐Form Survey subscales, including vitality (p = .049), social role functioning (p = .047), and general well‐being (p = .049). This study provides preliminary evidence indicating that client‐centered care, a case management approach, and multidisciplinary support are crucial to an effective caregiving support initiative. A full‐scale study is required to validate these findings.     

Typical and atypical dementia family caregivers: systematic and objective comparisons

This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II) studies. Based on statistical and clinical significance, there were large effects for demographics but no large effects among caregivers or care recipients on clinical and caregiving variables. Non-spouse family members were more likely to be caring for women and unmarried individuals. Grandchildren and nieces/nephews provided care for older care recipients. For care recipients who are unmarried, older, or women, fewer care possibilities may be available; consequently family members other than spouse or children may become their caregivers. Once an individual becomes a caregiver, the clinical experience of dementia caregiving is similar across caregiver types. These findings have implications for clinical care and public policy.     

Eldercare in the Transnational Setting: Insights from Bangladeshi Transnational Families in the United States

Little is known about the emotional impact of caregiving for elderly parents on migrant child in the transnational setting. To address this gap in the literature, this study examines the stressors, mediators, and outcomes of eldercare in the transnational context. Data were collected from 21 Bangladeshi immigrant men and women living in the United States who had living parents in Bangladesh over 60 years old. Despite the geographic distance, the migrants provide care to their parents such as emotional support, financial assistance, and arranging for care. While the health status of the care recipients contributed to primary objective stressors, none of the transnational caregivers’ narratives reflected the presence of any subjective stressors such as role overload, role captivity, and relational deprivation. Distance and depending on others for hands-on caregiving resulted in feelings of loss of control over the caregiving process. Caregivers experienced a range of emotions from guilt, excessive worrying, and distress over the unpredictability and uncertainty of their circumstances. Kin networks, communicative technologies, and a cultural norm of filial piety contributed to mediating stress. The findings underscore the importance of supportive institutional policies such as visa and travel policies, employment leave, and counseling services for caregivers who provide care for their elderly parents transnationally.     

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.     

The Effects of the MORE Wisdom Resources on Spousal Caregivers’ Life Satisfaction: An Application of the Resilience Model

Objectives: Models of resilience suggest that psychosocial resources and their interactions facilitate resilience while experiencing life challenges of caregiving. The MORE wisdom resources (sense of Mastery, Openness to experience, Reflective attitude, and Emotion regulation) have been suggested as possible personal resources of resilience that predict positive health outcomes of caregivers. Applying a model of resilience, this study examined the direct and indirect effects of the three of the MORE wisdom resources (sense of Mastery, Openness to experience, and Emotion regulation) on caregiving spouses’ life satisfaction and perceived physical health.Methods: Using data from the survey of Midlife in the United States, caregiving spouses (n = 114) and matched non-caregivers (n = 114) were included. We compared the direct and indirect effects of the wisdom resources on life satisfaction and physical health between the two groups.Results: The simple mediation model proposed in 2008 by Preacher and Hayes revealed that openness to experience was directly associated with better life satisfaction among caregiving spouses. Sense of mastery and emotion regulation had indirect effects on life satisfaction through spousal support. The effects the wisdom resources on caregiving spouses’ perceived physical health were not found.Conclusions: This study demonstrated that the three of the MORE wisdom resources are possible personal resilience factors influencing life satisfaction among caregiving spouses. Moreover, the study showed how spousal support mediates the relationship between the wisdom resources and life satisfaction.Clinical Implications: Interventions aiming to increase life satisfaction among caregiving spouses should focus on increasing both personal and environmental resources and strengthening the relationship of the caregiver and care recipient.     

Cross cultural issues in caregiving for persons with dementia: Do familism values reduce burden and distress?

While family caregiving for persons with dementia has been recognized as a major stressor for over twenty years, attention to the role of cultural values in influencing the stress and coping process of caregivers is rarely studied. This article summarizes individual studies from our lab group that include Latino caregivers, Korean and Korean American caregivers, Japanese American caregivers, and African American caregivers. The role of familism as a cultural value that was assumed to lead to greater acceptance of the caregiving role and to better mental health outcomes for caregivers was explored in each of these groups. Familism was found to vary across groups as expected based on acculturation to Western values of individualism. However, the relationship of familism to caregiving burden was not consistent across ethnic groups and was either independent of caregiving outcomes, or was positively correlated with distress. These results suggest that assumptions about cultural influences on caregiving need to be reexamined and explored in greater depth empirically. He is the principal investigator for the NIA-funded Stress, Ethnicity, and Caregiving Study (AG 16307) and executive director of the Los Angeles Caregiver Resource Center. Her research interests encompass the role of cultural values, personality, and social support in the stress and coping process of ethnic minority dementia caregivers. Her research interests are caregiver stress, health effects of stress, and race group health disparities. Her research interests include the stress and coping process of Korean American dementia caregivers, specifically the relationship between burden and family solidarity. Her research interests involve cross-national and cross-cultural comparisons of the issues related to gerontology and geriatric social work. Her research interests lie in the health effects of stress in Korean dementia caregivers.     

Cross cultural issues in caregiving for persons with dementia: Do familism values reduce burden and distress?

While family caregiving for persons with dementia has been recognized as a major stressor for over twenty years, attention to the role of cultural values in influencing the stress and coping process of caregivers is rarely studied. This article summarizes individual studies from our lab group that include Latino caregivers, Korean and Korean American caregivers, Japanese American caregivers, and African American caregivers. The role of familism as a cultural value that was assumed to lead to greater acceptance of the caregiving role and to better mental health outcomes for caregivers was explored in each of these groups. Familism was found to vary across groups as expected based on acculturation to Western values of individualism. However, the relationship of familism to caregiving burden was not consistent across ethnic groups and was either independent of caregiving outcomes, or was positively correlated with distress. These results suggest that assumptions about cultural influences on caregiving need to be reexamined and explored in greater depth empirically. He is the principal investigator for the NIA-funded Stress, Ethnicity, and Caregiving Study (AG 16307) and executive director of the Los Angeles Caregiver Resource Center. Her research interests encompass the role of cultural values, personality, and social support in the stress and coping process of ethnic minority dementia caregivers. Her research interests are caregiver stress, health effects of stress, and race group health disparities. Her research interests include the stress and coping process of Korean American dementia caregivers, specifically the relationship between burden and family solidarity. Her research interests involve cross-national and cross-cultural comparisons of the issues related to gerontology and geriatric social work. Her research interests lie in the health effects of stress in Korean dementia caregivers.     

Stressors and well-being among caregivers to older adults with dementia: the in-home versus nursing home experience

We examined differences in stressors and well-being for caregivers who care for a relative with dementia at home and those who had placed their relative in a nursing home. The groups did not differ in depression or somatic complaints, but nursing home caregivers had fewer social and interpersonal disruptions. Controlling for caregiving problems, nursing home caregivers reported more stressors due to ADL (activities of daily living) assistance, their relatives' behavioral and cognitive functioning, and lack of caregiving support from family and friends.     

Can culture help explain the physical health effects of caregiving over time among African American caregivers?

OBJECTIVES: The purposes of this study were to longitudinally examine the health outcomes of 107 African American caregivers who provided care to their elderly dependent family members and to determine the role of culture in predicting health outcomes. METHODS: With use of the stress and coping model of Pearlin and colleagues (1990) as a guide, the direct effects of background characteristics and stressors and the direct and mediating effects of resources (including culture) on two caregiver health outcomes (i.e., psychosocial health and physical functioning) were analyzed with hierarchical multiple regression analyses. RESULTS: Similar to other studies, we found that combinations of caregiver background characteristics, stressors, and resources at wave 1 had direct effects on African American caregivers' health outcomes at wave 3. Unlike previous studies, where culture was not measured, we found that cultural beliefs and values did help to explain health outcomes for African American caregivers. Specifically, culture justifications for caregiving, baseline psychosocial health, and caregiving mastery predicted wave 3 psychosocial health. Caregiver education, number of morbidities, and physical functioning at wave 1 were associated with physical functioning at wave 3. DISCUSSION: The findings from this study have implications for future studies, particularly in regard to cultural beliefs and values among African American caregivers.     

Caregiving arrangements of older disabled women, caregiving preferences, and views on adequacy of care

The role of women in caregiving to elderly people has focused primarily on their involvement as givers of care. In contrast, this article focuses on older women as recipients of caregiving. Data from the WHAS and the WHAS Caregiving Study are used to describe: the relationship of caregiving arrangements among moderately to severely disabled older women to sociodemographic, health and functional status; the characteristics of primary family caregivers and the assistance they provide; preferences for caregiving arrangements among both care recipients and caregivers; and views on adequacy of caregiving among older women cared for by family. Overall, about one quarter of these women had no caregiver, reflecting the inclusion in the WHAS of women with only moderate functional difficulty, but close to two-thirds relied on family members, and 15% on paid help only. Greater reliance on family was associated with being age 80 or older, black, and living with others. Women with poorer functioning--more ADL and IADL difficulties, difficulty taking medications without help, low cognitive functioning, not emotionally vital--also were significantly more likely to be cared for by family. Caregiving preferences varied among older women and their husband and daughter caregivers. Husbands consistently viewed in-home family help as the best caregiving arrangement regardless of levels of need. Older women and daughter caregivers both saw nursing homes as the best option for people with dementia and substantial care needs. One-quarter of elderly women chose in-home paid help as the best arrangement for meeting ADL/IADL needs. Older women generally held positive views of the assistance they received from family members. Younger women and lower income women were more likely to indicate they received less help than needed.     

A sociocultural stress and coping model for mental health outcomes among African American caregivers in Southern California

A sociocultural stress and coping model to explain emotional distress among caregivers of family members who have dementia across ethnic and cultural groups is presented and explored in a sample of 41 African American and 128 non-African American caregivers. In this sample, African American caregivers reported lower levels of burden but equal levels of depression and anxiety. In the structural equation model, previous reports that African Americans' lower appraisal of caregiving as burdensome resulted in lower levels of emotional distress were confirmed. However, in this model, this pathway was counterbalanced by a tendency of African American caregivers to use emotion-focused coping and, therefore, increase emotional distress. African American caregivers were also younger and in poorer health, factors which tend to increase both burden and emotional distress outcomes. As suggested by the sociocultural stress and coping model, the influences of ethnic group variables on stress and coping processes are complex and multidirectional.     

Families of elderly stroke patients. Effects of home care

Elderly stroke patients and their families were studied to determine the health effects of providing home care on family caregivers, whether or not caregivers actually providing care in the home experience different effects than caregivers whose family members live in nursing homes, and factors associated with any observed deleterious effects of caregiving. One hundred forty-seven stroke patients were eligible for study. Of these, 101 were available for follow-up; 89 family caregivers were interviewed (88%). Caregivers reported both positive and negative effects of providing home care. When actual home caregivers were compared with potential caregivers (those with family members in institutions), no differences in effects were seen. The relationship between each of three health effects (general, social, and emotional) and patient and caregiver attributes was explored. No factors were found to be related to poorer perceived general health. Dependent patient functional status and additional life stress were both associated with diminished social activity and emotional ill-health. In the latter instance, insufficient social activity and help from family were additional risk factors. If policy is going to advocate home care, its consequences for family caregivers must be known.     

Perceived Mental Health Status of Drug Users with HIV: Concordance Between Caregivers and Care Recipient Reports and Associations with Caregiving Burden and Reciprocity

Because caregivers’ monitoring of care recipients’ mental health status likely facilitates provision of needed forms of assistance, the current study examines relationship factors associated with agreement in caregiver- and recipient self-reports of recipients’ mental health status. Participants were former or current injection drug using persons with HIV/AIDS and their main caregivers (N = 258 dyads). Care recipients completed the Center for Epidemiologic Studies Depression scale and caregivers responded to a single item rating their recipients’ mental health. Nearly two-thirds (64.7 %) of dyads agreed on care recipients’ mental health status (κ = .26, p < .001). More secondary stressors of care, less reciprocity, and care recipients’ greater physical limitations, substance use, and younger age predicted greater agreement on recipients’ having poorer mental health. Greater secondary stressors and lower income were associated with less agreement on care recipients’ mental health. Findings, which suggest that promoting reciprocity and alleviating secondary stressors of caregiving may help facilitate these caregivers’ improved assessment of their care recipients’ mental health status, have implications to dyadic approaches to promote drug users’ HIV health outcomes.