Informal Caregiving: Dilemmas of Sandwiched Caregivers

Increased demand will intensify pressures for informal caregiving, especially for sandwiched caregivers. Using 1999, National Long Term Care Survey data, we contrasted socio-demographic statistics, care environments, activities of daily living (ADL) and instrumental activities of daily living (IADL) assistance, life quality, and employment burden of sandwiched versus non-sandwiched parental caregivers. Regression analysis explored variables influencing caregiving hours, employment accommodation, stress, strain, time for self, social life limits, free time, and excess burden. We found no differences in caregiving hours, no greater labor force accommodation, but lower quality of life among sandwiched caregivers with more than they can handle, but they undertook parent care despite quality of life reduction. Uniquely, the research indicates sandwiched caregivers’ employment mitigates stress, strain, and burden and supports policy changes providing more supportive workplace environments.

Understanding the association between time spent caregiving and well-being among employed adults: testing a model of work–life fit and sense of community

This study examines factors associated with work–life fit and sense of geographic community as mediators of the negative association between caregiving demands and well-being among employed informal caregivers. Data were drawn from a larger project assessing well-being among residents of three mid-size cities in Ontario, Canada. A subsample was selected of informal caregivers who worked for pay for at least eight hours/week (n?=?276). Caregiving demands were measured by time spent caring for an adult who was a relative, friend, or neighbour. Well-being followed a holistic conceptualization advanced by the Canadian Index of Wellbeing. The more time spent caregiving, the lower participants’ well-being ratings were. This association was mediated by perceived time adequacy, income adequacy, and sense of community, such that the more time participants spent caregiving, the lower their ratings of these three resources. This explained the initial association of caregiving hours with reduced well-being. Enhanced well-being was more strongly associated with sense of community than any other factor, which supports the importance of the community domain in understanding well-being among employed caregivers and suggests its further testing with other population groups. Policy implications for employers and community organizations are provided.     

Joy and sorrow: Explaining Chinese caregivers' reward and stress

This study explores positive and negative aspects of Chinese caregivers' experience, specifically, caregiving social reward as well as depression. Based on data collected in 1997–1999 with 110 caregivers who were then taking care of physically dependent parents or parents-in-law, this study finds that caregivers caring for elder parents with pensions reported higher levels of social rewards. Caregivers who were unemployed and had poor self-rated health reported higher levels of depression. Cultural values were found to have two dimensions of effect on caregiving experiences: while caregivers' report of strong filial responsibility was positively related to caregivers' depression scores, caregivers' report of social pressure was negatively related to their report of social reward. The author argues that the dual effect of family economic conditions and caregivers' cultural values calls for greater attention to elders' financial stability and caregivers' psychological well-being.     

“Ours is the Strangest Situation,Ours is Different from Most Peoples”: Spousal Caregiver Perspectives on the Complex Challenges of Dementia Caregiving in Late-Life Marriage

The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage.     

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.     

Caught Between Love and Money: The Experiences of Paid Family Caregivers

This paper considers the experiences of family home care providers, paid an hourly wage by California’s In Home Supportive Services program to care for disabled or elderly relatives. These caregivers are unique in that they provide care in what Arlie Hochschild calls the “third sector” of social life, where norms and responsibilities tied to work and family intersect. Drawing on in-depth interviews and ethnographic observations of family home care providers, we find that providers perceive their paid caregiving as deviant behavior that violates social norms surrounding family care, i.e. that people should not be paid for the care of kin. Family caregivers manage the norm violation associated with their carework by offering “accounts” that 1) emphasize the tasks and skill associated with caregiving and 2) by framing their carework as a public good that benefits the larger community. These accounts allow family providers to distance themselves from the norm violation of receiving a wage for care and to reconstruct their actions in a positive light.     

Injustice in family care of the Chinese elderly in Hong Kong

With increasing longevity, family care of the Chinese elderly in Hong Kong is evolving as a "caring trap" for female caregivers, especially unmarried daughters. Despite this, as Hong Kong is still a patriarchal Chinese society, most of the major decisions affecting the destiny of frail elders are made by sons or other male members of the family. The unequal gender roles, obligations, and division of caregiving responsibilities within the Chinese family and their effects on the caring relationship are discussed. Implications of this injustice based on gender regarding family care of the elderly and the possibility of its elimination are examined.     

Injustice in Family Care of the Chinese Elderly in Hong Kong

With increasing longevity, family care of the Chinese elderly in Hong Kong is evolving as a "caring trap" for female caregivers, especially unmarried daughters. Despite this, as Hong Kong is still a patriarchal Chinese society, most of the major decisions affecting the destiny of frail elders are made by sons or other male members of the family. The unequal gender roles, obligations, and division of caregiving responsibilities within the Chinese family and their effects on the caring relationship are discussed. Implications of this injustice based on gender regarding family care of the elderly and the possibility of its elimination are examined.     

Paid family caregiving: a review of progress and policies

Policymakers in the United States have begun to examine solutions that encourage increased sharing of caregiving responsibilities between government and family. Initiatives in Sweden and the United Kingdom are now in place. Support includes a care leave policy implemented at the federal level, paying salaries to family members when caregiving is a regular job, providing job training to salaried caregivers when their personal caregiving experience ends, community-based programs for caregivers, and allowances to be used for providing care to an elderly person. In the United States, 13 states pay caregivers as Medicaid providers. Policymakers have considered tax incentives and, in 1975, U.S. Senate Bill 1161 was introduced but failed as an attempt to provide cash subsidies to families caring for the elderly. A proposal has been made to expand the Temporary Disability Model to include care of family members of all ages by providing adequate wage replacement to assist caregivers. At present, 34 states provide some type of economic support for caregivers. Research is needed to determine what types of programs are most acceptable and beneficial to caregivers as well as cost effective for government.     

Spousal motivations of care for demented older adults: A cross-cultural comparison of Greek and American female caregivers

Purpose of the study: This study examines motivations for caregiving in American and Greek female spousal caregivers (FSCGs), and identifies cross-culturally equivalent and culturally specific types of motivations for care of a demented spouse. Design and Methods: Thirty American women and 44 Greek women who were caring for their demented husbands were surveyed about their motivations for caregiving. Results: Greek and American FSCGs were dissimilar in the extent to which they reported being motivated by a desire to maintain family harmony. Greek and American caregivers also differed in how often they cited financial reasons, wanting to please their spouse, being against institutionalization, and giving the best care as motivations for care. Implications: Culturally related differences in caregiving motivations may translate into differences in the extent to which motivations result in adaptive or maladaptive outcome for the caregiver and the care recipient.     

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.     

Three phase development of caring capacity in primary caregivers for relatives with Alzheimer's disease

Multiple, open-ended, qualitative interviews were conducted with 16 primary caregivers for relatives with Alzheimer's disease in order to describe caregiver self-development through the caregiving journey. Caregiver change is traced up to five years after the care recipient's death. Caregivers' capacity for caring was found to be at the core and to unfold in three phases: development of caring capacity for the care recipient, development of capacity for self-care, and development of caring capacity for others. The four elements of caring capacity (perception, motivation, competency, action) are expressed in relation to the care recipient, to the self, and to less familiar “others”. The caregiving experience tends also to prompt caregivers to become caregivers for humanity and to expand their sense of self. This may lead to the development of the altruistic self, which incorporates both a selfless concern for the welfare of others and a self-directed concern for one's own welfare.     

Women Caring for Our Aging in Place Seniors Will Lose Out because of U.S. Immigration Policies

Most older people experiencing chronic health problems, physical disabilities, and memory losses are still able to age in place in their own homes. However, they often need help from others to enjoy healthy, active, and independent lives. They turn mostly to family members, mainly women and usually their daughters, daughters-in-law or wives. But caring for frail elders has become more demanding and complex, and these family members often feel physically and emotionally overwhelmed and burnt out. They concede that they cannot do it alone. Others find it more difficult to hold full-or even part-time jobs. Hiring home (direct) care workers to assist their loved ones can be an effective solution to ease their caregiving responsibilities. However, these personal care aides, home health aides, and nursing assistants are already in short supply. Moreover, going forward the aging of the baby boomer population will result in an even greater demand for their services even as these jobs are often unattractive to American-born workers and turnover is high. This country’s immigration policies will make it even more difficult for women caring for older persons to hire these workers. Over 25 percent of home care workers are low-skilled immigrants or foreign-born. However, the Trump administration’s policies reduce the number of immigrants entering the U.S. and specifically choke off the various pathways that enable low-skilled persons to be hirable in the home care sector. Female caregivers seeking relief from their caregiving responsibilities will lose out unless we remove these immigration barriers.     

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.     

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.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

“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.     

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.     

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.