Depression and Missed Work among Informal Caregivers of Older Individuals with Dementia

Although providing informal care can negatively affect caregiver emotional health and lead to depression, the association between caregiver depression and missed work is unknown. We use data from the National Longitudinal Caregiver Survey to examine the relationship between caregiver depression and missed work among informal caregivers for older veterans with Alzheimer’s disease or vascular dementia. Two-part models are used to estimate the expected hours of work missed among working caregivers. Caregiver depression is statistically significantly associated with the likelihood and amount of time missed at work, resulting in an average of an extra half-day of work missed per month. While the effect of caregiver depression on work missed is modest, it represents another possible benefit from interventions to support caregivers.     

Experiences of Informal Caregivers of Older Adults Transitioned From Nursing Homes to the Community Through the Money Follows the Person Demonstration

This study examined experiences of 156 informal caregivers of older adults who transitioned to the community through the Connecticut Money Follows the Person (MFP) Rebalancing Demonstration after prolonged nursing home stays. Caregiver burden, positive aspects of caregiving, depressive symptoms, anxiety, and comparative subjective stress were examined in relation to caregiver demographics and care receiver characteristics with a cross-sectional survey. Caregivers reported low burden, depressive symptoms, and anxiety, and fairly high levels of positive aspects of caregiving and satisfaction with community services. Most caregivers were less stressed compared to the time the care recipient was in, or before they entered, a nursing home. Live-in caregivers experienced more positive aspects of caregiving, but adult children reported higher burden than other caregivers. Unmet service needs also increased caregiver burden. Programs like MFP are a viable option with broadly positive outcomes from a caregiver’s perspective. Enthusiasm for increasing access to community care is growing for older adults who otherwise would reside in nursing homes for extended periods. Identifying unmet service needs and needs for targeted functional support could further enhance caregiver experiences and contribute to the successful transition of older adults to the community.     

Factors Associated With Caregivers’ Use of Support Services and Caregivers’ Nonuse of Services Sought

Informal caregivers may face barriers accessing services like respite care, training, and support groups. Using multinomial logistic regression, I modeled caregivers’ probability of using all services sought (“all services used”) and nonuse of any services sought (“any unused services”) as a function of caregiver and care-recipient characteristics. Care-recipient health and function, especially dementia and need for medical task assistance, were associated with all services used and any unused services, and any unused services were more likely among adult children caring for their parents, caregivers of Black and Hispanic older adults, caregivers providing intensive care, caregivers living in metropolitan areas, and residents of states that spend more on increasing access to caregiver services under the National Family Caregiver Support Program. Regularly scheduled caregiving was associated with higher likelihood of all services used, but not with any unused services. Steps should be taken to increase access for caregivers who provide intensive care, care to dementia patients, or assistance with medical tasks and for Hispanic families.     

Dignity in dementia: Person-centered care in community

Drawing on Kitwood's [Ageing Soc. 13 (1993) 51] theory of person-centered care and the interpersonal process of caregiving, this article offers an alternative to the image of the family caregiver as victim through an exploration of the lived experience of caring for a person with dementia in community. Extending care beyond coping, the act of giving care is promoted as a worthy activity and reciprocal social opportunity. Three nonfamily caregiver “portraits” are offered in an arts-informed representational form. The relational processes of caregiving are explored from the vantage point of personal experience and theoretical knowledge. Dignity emerges as the resonant quality, essential value, and guiding principle in an ethic of dementia care. Implications about the direction of research about care and caregiving and research accessibility and usefulness are explored.     

The Long‐Term Effects of Caregiving on Women's Health and Mortality

Caregivers experience numerous mental and physical health effects from the stress of providing care, but we know little about whether these problems persist in the long term and whether long‐term effects differ across caregiving contexts. Using the National Longitudinal Survey of Mature Women, we examined the relationship between caregiving and long‐term patterns of depressive symptoms, functional limitations, and mortality. We also explored the health effects of caregiving in‐home versus out‐of‐home and by caregiver/care‐recipient relationship. Analyses show that in‐home spousal and parental caregiving predict increased depressive symptoms and functional limitations in the long term but are unassociated with mortality, whereas caregiving outside the home is unassociated with later depression and functional limitations but predicts a lower risk of mortality. This study highlights the usefulness of approaching stressful experiences such as caregiving from the life course perspective, viewing them as processes that unfold over time within specific contexts that may carry delayed or cumulative consequences.     

Gay Bars and Serendipity

Abstract

HIV/AIDS continues to be a serious public health issue. As HIV changes from an acute disease to a more chronic illness, it places increased responsibility on family caregivers to provide on-going assistance. Based on a conceptual model of caregiving resilience, this study found high variation in caregiving outcomes with many caregivers demonstrating high levels of well-being despite adverse life circumstances. Factors that contributed significantly to caregiver well-being included income, caregiver health, discrimination, multiple loss, dispositional optimism and self-empowerment. These findings suggest that HIV/AIDS and caregiving entail more than stress and distress and that future research needs to consider caregiving within the context of a historically disadvantaged community, resilience of informal caregivers, and risk and protective factors at the personal, cultural and community levels. Such information is necessary to design community-based interventions to support informal caregivers and persons living with HIV/AIDS.     

Foreign Domestic Workers and Eldercare in Singapore: Who Hires Them?

In Singapore, policy makers expect families to remain actively involved in the care of their frail older relatives, as manifestly expressed in its Many Helping Hands approach to long-term care. To enable families to fulfill this expectation, the government has enacted policies that encourage the hiring of foreign domestic workers (FDWs) to complement or supplement informal caregiving efforts. Using the Andersen Behavioral Model, we were interested in identifying caregiver and care receiver characteristics that might predict the hiring of FDWs. With data from a convenience sample of 488 informal caregivers, we ran logistic regression regressing the hiring of an FDW on various predisposing, enabling, and need factors. Of interest, enabling factors such as household income, housing type, and educational level were predictive of hiring an FDW in the home. Only one need factor, time spent in caregiving, was predictive of the increased likelihood to hire an FDW. Policies that encourage the marketization of care are likely to favor those with financial means and inadvertently ignore the caregiving burdens of lower income families. In addition, we suggest research and policies to ensure the well-being and protection of FDWs who have become a key component of the long-term care policy and practice in Singapore.     

Informal Care Intensity and Caregiver Drug Utilization

Providing informal care has negative health consequences for informal caregivers. If these health consequences increase drug utilization among caregivers, estimates of health care savings from informal care—mainly realized through reductions in utilization among care recipients—should consider the increased drug costs incurred by informal caregivers. This paper evaluates whether more intensive informal caregivers have higher drug utilization than less intensive caregivers, controlling for initial health status and other factors. We find that informal care intensity is associated with higher drug consumption. An increase of 10% of total informal care per day is associated with a 0.7% increase in drugs. The small magnitudes indicate that, in this application, it is not important to consider caregiver drug utilization when quantifying the net savings to the health care system of informal care. For individual caregivers, such as those who take multiple drugs per month and/or have no drug coverage, the increase in drug utilization associated with intensive caregiving is likely to be costly.     

A review of the biopsychosocial aspects of caregiving for aging family members

With the ever-increasing growth in the aging population, the need for care providers will also continue to rise. Many of these caregivers will provide informal care to family members and friends at a price to their own physical, psychological, and social well-being. This article examines the phenomenon of caregiving and provides a review of the biological, psychological, and social impacts of caregiving to care providers. George Engel’s biopsychosocial model is explored to examine the biological, psychological, and social factors that can affect a caregiver’s health and well-being. This article further explores social work practice implications and strategies for future intervention to reduce caregiver burnout and aid in their self-preservation.     

African American Informal Support Networks

Abstract

This study examined African American informal support network functioning utilizing Vaux's (1998) reciprocal exchange model. Ten African American caregivers of relatives with severe mental illness and their main informal helpers were interviewed using a semi-structured questionnaire. In 8 of the 10 African American families interviewed, one close relative, called a “main supporter,” assumed major responsibility, comparable to that of the primary caregiver, for care and supervision of the family member with mental illness. Main supporters felt that their family helper role, although stressful at times, gave meaning and purpose to their lives. Five main supporter-primary caregiver pairs formed 'joint households' to share economic and human resources and to facilitate caregiving duties. Social work intervention for caregiving families should provide assistance to both primary caregivers and their informal supporters, particularly main supporters.     

What Are Strategies to Advance Policies Supporting Family Caregivers? Promising Approaches From a Statewide Task Force

Family caregivers are the cornerstone of the long-term supports and services infrastructure in the United States, yet they often contend with many challenges related to this role. Public policy has been slow to change, leaving many caregivers vulnerable to health and economic consequences. Using models of policy making, we identify barriers to advancing policies that support family caregivers and overcome policy drift. We draw on discussions from the California Task Force on Family Caregiving as it prepares state policy recommendations. Identified strategies include identification of caregivers in health care and workplace settings to promote political consciousness raising, collecting and reporting on data that frame caregiving as a policy problem, borrowing policies and language from overlapping fields to emulate their policy successes, and presenting supportive caregiver policies as solutions to other policy problems. By presenting specific strategic approaches to advance caregiving policies, we provide tools to address the growing gap between caregiver needs and policy responses.     

Ethnic Variations in Dementia Caregiving Experiences

Abstract

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.     

Caregiver burden, dementia, and elder abuse in South Korea

The purpose of this study is to identify characteristics that would increase the likelihood that a Korean older adult with dementia being cared for by a family caregiver is at risk of being abused. This analysis was based on a sample of 481 primary family caregivers from the data of Comprehensive Study for the Elderly Welfare Policy in Seoul (2003). Multiple regression analysis was used to examine predictors among the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment, functional ability, caregiver burden, and social support for the degree of elder abuse. The degree of elder abuse was significantly associated with caregiver burden, mental impairment, dependency of daily living of care recipient, and use of formal services.     

“No Matter What I Do They Still Want Their Family”: Stressors for African American Grandparents and Other Relatives

Grandparents and other relatives increasingly assume the role of primary caregiver to minor children. This study interviewed family members caring for children whose parents were not available due to parental incarceration, other involvement in the criminal justice system, and substance abuse-related issues. Interviews with 25 African American women examined the impact of caregiving including stress and depression. Stress included caregiver issues related to finances, time allocation, care responsibilities, and concerns about the absent parent, as well as issues specific to the children related to school concerns, child behavior, and emotional problems. These stresses were examined along with caregiver depression scores using the Center for Epidemiological Studies Depression Scale, which indicated more depression related to caregiver illnesses, older caregivers, and care for older and a larger number of children. This study suggests that caring for these children is both challenging and stressful, and caregivers are at risk for depression and other mental health concerns. Health and service providers should carefully assess the needs of caregivers when determining the needs of families where children are under care of nonparental relatives. Family-based services are needed that include caregiver supports as well as support for children.     

The family caregiving career: implications for community-based long-term care practice and policy

Informal (i.e., unpaid) long-term care for disabled older adults is often chronic, but it is only recently that research has considered the longitudinal implications of family caregiving. In particular, investigators have conceptualized caregiving as a "career," and within the caregiving career, a number of diverse trajectories and transitions can occur. Following a summary of these findings, this paper considers how longitudinal caregiving research can influence and potentially address key policy and practice concerns, especially in the delivery and support of community-based long-term care (CBLTC) services. It is suggested that with the refinement of the informal long-term care literature, existing policy and practice to support caregiving families can be similarly advanced.     

Social Support and the Mental Health of Family Caregivers: Sons and Daughters Caring for Aging Parents in Japan

The prevalence of depressive symptoms among family caregivers has been documented as a serious social problem that could threaten the lives of the elderly and their family caregivers. Social support is considered to be a promising remedy for this problem, although a comprehensive examination of the availability and effectiveness of social support that includes both formal and informal support across multiple dimensions remains limited. In addition, little research has been conducted in Japan on gender differences in stress processes. This study tried to fill those gaps by analyzing recent survey data on sons and daughters who are caring for their elderly parents. The results indicate that sons and daughters have similar levels of formal and informal support for daily care and advice, while there are some gender differences in regard to the availability of other types of social support. It was also found that many types of informal support were significantly associated with a lower caregiver burden for daughters, although this was not necessarily the case for formal support. General instrumental support from formal sources was even associated with higher levels of distress. For sons acting as caregivers, daily caregiving support was the only formal support that was significantly associated with their lower level of distress. Issues of formal support are discussed, in order to reduce the psychological burdens borne by sons and daughters who care for their parents at home.     

Caring for a demented relative at home: Effects on parent–adolescent relationships and family dynamics

Informed by a family systems perspective, the main purpose of this study was to identify changes in parent–adolescent relationships and in family dynamics when a family member with Alzheimer's or similar dementia moves into the household. The data, based on in-depth interviews with 17 adolescents, revealed that the care situation induces both positive and negative changes in family relationships. On the one hand, adolescents showed considerable empathy and respect for the parent who is the primary caregiver and reported that joint involvement in caregiving enhances adolescent–parent bonds. On the other hand, the adolescents lamented restrictions on their own and the family unit's activities due to the care situation. They also complained about spillover of caregiver stress on other family relationships and about parent-caregivers' focus of attention on the care recipient. These negative features strongly influenced adolescents' adaptation to the care situation. Overall, the results confirm the importance of a family systems perspective for understanding of and intervention in family caregiving for demented relatives. Family life educators should convey the importance of family dynamics in caregiving situations to their audiences, and family practitioners should be aware that an exclusive focus on the primary caregiver's problems may hamper adaptation of other family members (and especially adolescents) who are involved in the care situation.     

Family caregivers’ perceptions of maltreatment of older adults with dementia: findings from the northwest of Spain

Dementia is a neurocognitive disorder that implies a risk factor of maltreatment by family caregivers. In this study, we analyzed both informal caregiver’s perceptions of maltreatment and aspects of the caregiver and caregiving behavior that may be associated with maltreatment. We conducted five focus groups (FGs) in three Spanish cities: Segovia, Soria and León. The themes that were identified were related to two levels of maltreatment: (a) relational and (b) institutional. At the relational level, we observed the justification of maltreatment of Older Adults with Dementia (OAswD) by family caregivers during the occurrence of behavioral symptoms. At the institutional level, we noted that lack of support from the government was considered a type of maltreatment. These themes suggest that policy issues related to healthcare should be considered.     

Caregiving transitions: Developmental and gendered perspectives

Providing care for family members is a life event that both reflects and influences family dynamics. Caregiving careers, or the length of time a person provides care, are characterized by a series of transitions to which they must continuously adapt. Women are more likely than men to assume the caregiver role and this role encompasses gender inequalities associated with work and caregiving expectations. This article presents qualitative data from interviews conducted with caregivers who participated in a community-based supportive services program. The experiences of these women provide insight into how caregivers transition into their role, strategies for supporting new and experienced caregivers, and their concerns for their future. Developmental and gendered perspectives of caregiving were used as a context to analyze their experiences.