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.     

Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?

PURPOSE: This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. DESIGN AND METHODS: Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. RESULTS: Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. IMPLICATIONS: Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.     

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.     

Other roles of caregivers: competing responsibilities or supportive resources

Although the majority of research has conceptualized other roles of caregivers as competing commitments, a growing body of literature views multiple roles as supportive resources. This study examined the impact of multiple roles on the caregiving experience among informal helpers of a probability sample of elderly people living in a community setting. Results indicate that other roles, particularly when caregiving involves a large time commitment, do contribute to burden. However, other roles, especially roles outside the family, are also associated with improved caregiver well-being.     

Care taking experiences and social relations of the elderly

This is a qualitative study based on interviews with 18 former caregivers in Vienna. It can be found that caregiving is not restricted to close family members but covers a rather wide range of related and non-related persons. Caregivers usually start their career as middle-aged persons (around 55); due to the length of caregiving, most caregivers have gone past the age of 60 at the end of the caregiving period. Women without competing social responsibilities dominate among caregivers. Three mechanisms of reciprocity seem to be able to generate positive feelings toward the caregiving experience: gratitude from those cared for, balanced interaction, and financial compensations. Only in a very few cases are shared functions between different caregivers or between caregiver and formal services observed. Efforts towards formal services prove to be of little success in supporting the primary caregiver. In the final stage, almost all supported old people enter an institutional environment.     

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.     

Family caregiver satisfaction with the nursing home after placement of a relative with dementia

OBJECTIVE: This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. METHODS: A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis. RESULTS: Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation. DISCUSSION: Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.     

Making choices: a within-family study of caregiver selection

PURPOSE: This article reports on a within-family study to identify factors that lead mothers to expect that a particular child will serve in the role of primary caregiver. DESIGN AND METHODS: Data for this study were collected by in-person interviews with a representative sample of 566 mothers between the ages of 65 and 75 years residing in the greater Boston area, who provided detailed information regarding all of their adult children. Both multivariate and qualitative data analyses were conducted. RESULTS: Emotional closeness and similarity of gender and attitudes were strongly associated with which children mothers identified as probable caregivers. Findings regarding exchange were mixed. Mothers were more likely to name adult children who had provided them with support; however, mothers' past provision of assistance to children was unrelated to expectations regarding care. No aspects of children's availability besides proximity and employment of adult children affected mothers' expectations. In selecting a primary caregiver, mothers emphasized expressive characteristics of intergenerational relationships, rather than instrumental and contextual factors associated with children's availability. IMPLICATIONS: The findings indicated a discrepancy between maternal preference for care and actual patterns of support from adult children. Practitioners who work with older adults and their families should incorporate parents' views of the "likely" caregiver into family counseling protocols. Family counseling in both the precaregiving and actual care provision stages may be useful to clarify expected roles for children.     

Families of Alzheimer's victims. Family support to the caregivers

This study examined the instrumental and social-emotional support provided by families to the primary caregivers of Alzheimer's patients. It was anticipated that the more adequate the support provided by the family, the less sense of burden and the better the coping effectiveness of the caregiver. Ratings of instrumental assistance, social-emotional support, adequacy of support, and coping effectiveness were made by trained raters from transcribed interviews with 23 primary caregivers. Also, a second family member who was usually next closest of kin to the caregiver was interviewed in order to provide another perspective of the support the family provided. While the major caregiving tasks were performed by the primary caregiver, the types of assistance from family that seemed most appreciated were visits and having persons stay with the patient so that the caregiver could take a trip, rest, run errands, or get out of the house for social activities. The majority of caregivers felt a high degree of support from their families and reported low levels of emotional upset resulting from family support efforts. The most common family problems reported were lack of visits, disagreement over level of patient's mental and physical functioning, and disagreement over the type of care required. The data confirmed the hypothesis that family support was positively associated with the caregiver's coping effectiveness. In addition, caregivers who did not receive enough support were most burdened; however, the group receiving the greatest amount of support was the next most burdened, a finding which was unanticipated.(ABSTRACT TRUNCATED AT 250 WORDS)     

Reducing the distance in distance-caregiving by technology innovation

Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1) the elder and the family caregiver(s) may reside in the same household; or 2) the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.     

Burden among family caregivers of persons with Alzheimer's disease in nursing homes

PURPOSE: This article examines family caregiver burden after placement of a relative with Alzheimer's disease or a related dementia in a nursing home. Design and Methods: A systems-oriented contextual approach was used to study burden in 276 family caregivers. RESULTS: SAS PROC MIXED analysis showed burden to be associated with caregiver age, length of time involved in caregiving, custodial units, involvement in hands-on care, and expectations for care. IMPLICATIONS: The findings suggest that more services aimed at relieving caregiver burden after nursing home placement may be warranted, particularly so for caregivers who are older and for those who had a shorter length of involvement in direct caregiving before institutionalization.     

Stability of informal long-term care

Driven by projections of increasing needs for long-term care coupled with changing social trends, fear of family abandonment of caregiving has persisted. Data from two longitudinal studies confirm that informal caregivers are not withdrawing their help. Not only were family and friends the first source of assistance, but they also continued to be the primary source of care over 10 years. Further, although the majority of elders retained the same primary caregiver, if there was a change, it was typically to a new informal caregiver in the next generation. Very few elders who remained in the community ceased receiving informal care or turned from informal care to formal services.     

Race and gender differences in perceived caregiver availability for community-dwelling middle-aged and older adults

PURPOSE: Informal family caregivers are increasingly recognized as critical for meeting the needs of individuals with chronic diseases associated with aging. This study examined race and gender differences in perceived informal caregiver availability for participants aged 45 and older in a large national epidemiological study. DESIGN AND METHODS: Cross-sectional data were collected in structured telephone interviews from 32,999 participants from the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants were asked if they believed that someone was available to provide care for them in the event of a serious illness or disability and, if so, to describe that person. RESULTS: More than 80% of the participants reported having an available caregiver. Variables associated with lower perceived caregiver availability from a multivariable logistic regression analysis included being female, White, or unmarried; living alone; being older than 85; and having worse self-rated health. Spouses were the most likely caregivers for all racial and gender groups except for African American women, who identified daughters as the most likely caregivers. African American women also showed the smallest differential in perceived caregiver availability between married and unmarried (82.8% vs 75.7%), whereas White men showed the largest differential (90.9% vs 60.4%). IMPLICATIONS: Most individuals believe they have an informal caregiver available to them, but certain factors increase the risk of reporting no available caregiver. Increased efforts are needed to anticipate future caregiving needs, particularly for individuals who perceive a lack of available informal caregivers and may require more formal care services.     

Violence and violent feelings: what causes them among family caregivers?

We present a conceptual framework for understanding two distinct but related phenomena: violent feelings (i.e., the fear of becoming violent) and violent behaviors by family caregivers toward relatives with dementia. Based on both the literature on family caregiving and on family violence, four factors are hypothesized to explain these two dimensions of violence: caregiving demands, interactional stressors, caregiver characteristics, and caregiving context. Analyses of quantitative and qualitative data on 236 family caregivers to dementia victims revealed several characteristics that were predictive of violent feelings on the part of caregivers, including physical aggression by the care recipient, disruptive behaviors, and a shared living situation. Structural relationship and caregiver's age were found to be related to actual violence; spouses were more likely to engage in violence than other relatives, as were older individuals. In addition, violence by the care recipient was positively related to caregiver violence.     

Association of care recipients’ care‐need level with family caregiver participation in health check‐ups in Japan

Aim

The public mandatory long‐term care insurance system in Japan has supposedly mitigated the care burden for family caregivers of older adults, whereas family caregivers still play a considerable role in providing care. The effect of informal caregiving on the caregiver's health has been of great interest. We investigated the relationship between the amplitude of informal caregiving and caregiver participation in health check‐ups in Japan.

Methods

The present study was a cross‐sectional analysis of nationally representative data in Japan (2010 Comprehensive Survey of Living Conditions). We investigated the relationship between care recipients’ care‐need level and in‐home caregiver participation in health check‐ups during the last year of the survey for caregivers.

Results

A total of 3354 caregiver/recipient pairs were included in the study. Crude proportions of caregivers completing a health check‐up by care‐need level were 68.4% (support required 1 and 2), 63.5% (care required 1–3) and 60.3% (care required 4 and 5). Higher care‐need level was negatively associated with caregiver participation in health check‐ups (support required 1 and 2as reference, care required 1–3: odds ratio 0.82, 95% confidence interval 0.75–0.90), care required 4 and 5: odds ratio 0.76, 95% confidence interval 0.74–0.79) after adjustment for possible confounders. Inclusion of the caregiver time devoted to care per day and caregiver self‐rating of health as independent variables did not change the result.

Conclusions

These results suggest that facilitating health check‐up participation for family caregivers of care recipients with higher care‐need levels might be an effective intervention for decreasing the gap in health behavior possibly caused by informal caregiving. Geriatr Gerontol Int 2018; 18: 26–32 .     

Caring for the seniors with chronic illness: The lived experience of caregivers of older adults

BackgroundCaregivers of the elderly with chronic illnesses are exposed to the burden associated with their caregiving activities. This study described the lived experience of caregivers of older adults in Nigeria.MethodsA qualitative design guided by interpretive phenomenology informed the design of the research, whereby 15 in-depth interviews were conducted with caregivers of older adults with chronic illnesses. The interview sessions were audiotaped and transcribed verbatim and analysed using constant comparison analysis method.ResultsFifteen caregivers, from different parts of Osun State, Nigeria, took part in the in-depth interviews. The caregivers were aged between 19 and 70 years, ten were women, five of them had secondary education, seven were self-employed and six were in a spousal relationship. The study uncovered four interrelated themes with explanatory subthemes—commitment to preservation of life (managing challenges associated with daily routine, problem with mobility, bathing and grooming, feeding, and problem with hygiene) (ii) denial (refusal to accept that burden exists), other things suffer (disruption of family process, suffering from poor health and social isolation), (iv) reciprocity of care (pride in caregiving, caregiving as a necessity and not by choice, and law of karma).ConclusionThis study provides insight into the burden of care of older adults with chronic illness. Caregivers’ commitment to preserving life makes them provide assistance whose performance even run contrary to their own wellbeing. Intervention programme should be designed to support the caregivers thereby improving their wellbeing.     

Paid and unpaid support received by co-resident informal caregivers attending to community-dwelling older adults in Spain

In this study from Spain, support received from outside the household by informal caregivers of people older than 64 years is analysed. The Spanish Time Use Survey (2002–2003) is used to examine: (1) the proportion of co-resident informal caregivers receiving paid and unpaid support by persons from outside the home; (2) the main factors associated with receipt of external paid and unpaid support; and, (3) factors linked to the amount of support received in terms of time. The study sample included 404 caregivers who cohabited with the person receiving care. We used a modified Andersen Behavioural Model as the analytic framework. Significant differences are observed in receipt of support according to predisposing, enabling and need factors. Overall, support (paid and unpaid) is significantly lower among households with women caregivers. In comparison with the least educated caregivers, higher levels of paid support are observed among those with secondary school or higher education, even when income, household size and receiver’s age are included in the model. After controlling for care receivers’ disability level and age, unpaid support is significantly higher among employed caregivers, spouses and caregivers living in medium-sized cities, versus unemployed caregivers, other relatives and caregivers living in large cities, respectively. These data highlight the inequalities of resources in terms of caregiver gender, socio-economic status and population size. The findings underscore the need to extend analysis not only to primary caregivers, but to caregiving networks and other types of caregiver support as well.     

Care Tasks in the Stress Process for Family Caregivers in Urban China

Objectives: To explore the role of care tasks in the caregiving stress process, this study tested the relationships between distinct care tasks, primary stressors, caregiver burden, and depressive symptoms among caregivers.

Methods: The data were collected from a sample of 754 caregivers who provided care for frail, elderly family members in Shanghai, China. Path analysis was conducted to identify the relationships between the three types of care tasks (monetary support, physical care and emotional care), the caregivers’ background, primary stressors, caregiver burden, and depressive symptoms.

Results: The results show distinct paths through the three types of care tasks in the stress process. Caregivers with higher incomes were more likely to provide monetary support to their care recipients. Being a female caregiver and having greater primary stressors were associated with more involvement in physical care, which predicted higher levels of caregiver burden and further exacerbated depression. The cognitive impairment of care recipients was associated with greater emotional care, with the caregivers who provided more emotional care reporting higher levels of caregiver burden but lower levels of depression.

Conclusions: This study underscores the importance of considering different types of care tasks to properly understand caregiving stress across cultures and societies.

Clinical Implications: This study highlights the need for interventions to alleviate the caregiving stress by helping family caregivers understand the importance of emotional care, training them to appropriately meet the psychological and social needs of their care recipients and providing financial support for caregivers with lower income to purchase respite care services.     

Caregivers of frail elders: updating a national profile

PURPOSE: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. DESIGN AND METHODS: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. RESULTS: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. IMPLICATIONS: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years.     

Effects of an adapted leisure education program as a means of support for caregivers of people with dementia

The loss of autonomy associated with dementia affects the people with dementia themselves as well as their caregivers who are often left feeling powerless and incompetent in their caregiving role. Most of the programs developed to support caregivers focus on burden and do not consider the positive aspects of caregiving. Leisure represents a way to enhance the presence of positive aspects in the caring experience. Moreover, leisure might contribute to the maintenance of satisfactory relationships between the caregivers and the person with dementia. An adapted leisure education program was developed as a means of support to caregiver involvement. This study (n = 49) aims to evaluate the impact of this program on caregivers’ well-being, self-efficacy towards adapted leisure, and quality of the relationship with the care receiver. Mixed methods were used. Pretest-posttest with a follow-up design made up the quantitative part. In addition, open-end interviews (n = 10) were conducted. The quantitative results showed few impacts of the program on caregivers. However, the qualitative analysis revealed that the intervention had positive impacts for the caregivers, care receivers and other family members. This study introduces caregiver support in a new, positive perspective by focusing on the positive aspects of caregiving rather than the burden.