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.     

“My nest is full:” Intergenerational relationships at midlife

Incorporating a life course perspective, this qualitative study used focus groups to explore the experiences of midlife adults who were simultaneously providing support to emerging adult children and aging parents. Results indicated that adults situated in middle generations held beliefs that endorsed family-based responsibility to both younger and older members. Parents gladly supported children despite their longer transition to adulthood. Often unanticipated but accepted, provisions of care to aging parents were experienced with ambivalence — a joy and a burden. The transition of their parents to greater dependence helped participants gain insights into the terrain of late life and encouraged reflections about the intersection of aging, independence, and family responsibility. Participants expressed intentions to preserve their own independence and spare their children of caregiving burdens through self-directed actions. Implications focused on negotiations of family relationships around issues of independence and family responsibilities as a way to reduce intergenerational ambivalence.     

The cost of caregiving: wage loss among caregivers of elderly and disabled adults and children with special needs

Sixty-one percent of the adults caring for elderly and disabled family members and 53% of parents of children with special needs are employed. Yet studies examining the experience of employed caregivers of children with special needs and elderly or disabled adult family members have not examined the impact on earnings or the workplace policies that might help reduce the conflicts between work and caregiving. This study begins to fill this gap using data from a nationally representative US survey of American adults. We find that employees who live with a child with a health problem are 48% more likely to have lost wages. Each adult with health issues that an employee is responsible for raises the chances of wage loss by 29%. At the same time, access to paid leave for family health needs reduces the likelihood of wage loss by 30%, and having a supportive supervisor reduces the odds of experiencing wage loss by 37%. Implications for employers and US policy-makers are discussed.     

Social Work Practice with Older Soviet Immigrants

ABSTRACT

With the recent sociopolitical changes in the Former Soviet Union, significant numbers of older Soviets have arrived in the U.S. with their families. Soviet immigrants who enter the U.S. are no longer automatically considered political refugees, which has limited their entitlement to services. Recent changes in public welfare and immigration policy place the responsibility for care of elderly members solely on the family. While caring for older adults is stressful for any family, new immigrants may be especially burdened since they have limited knowledge of services, few coping resources to provide adequate care, and little experience resolving cultural conflicts with their older parent. By using a practice model designed to evaluate late-life caregiving situations, two case scenarios are presented to examine practice and service delivery issues of older Soviet immigrants and their families.     

The Promise of an Accumulation of Care: Disadvantaged African-American Youths’ Perspectives About What Makes an After School Program Meaningful

African-American youth growing up in dangerous, deprived homes and communities are at great risk of developing impaired relationship capabilities, which disadvantages them further in the workplace and in their personal lives. While after-school programs have well-documented positive effects, researchers have called for better understanding of improving youths’ engagement in services and their constructive relationship skills. Here, we report on a project using participatory action methods to engage poverty-level African-American youth in developing a leadership development program they would find most meaningful. Stand Up Help Out (SUHO) gave youth three layers of caregiving experience: receiving care from instructors, giving and receiving care from peers, and providing care through constructive community action initiatives and mentoring elementary school children. Findings were that: (1) participation and retention of youth in SUHO were considerably higher than national averages; (2) youth reported that SUHO made it possible for them to have better relationships as friends, romantic partners, and in academic settings, and they looked forward to being better parents, (3) youth developed positive peer relationships despite a context of mistrust and gang violence, (4) youth actively sought out relationships with caring adults and identified what was most meaningful in those relationships, and (5) youth deeply valued the opportunity to develop their ability to care for others.     

Story sharing: restoring the reciprocity of caring in long-term care

Residents in long-term care facilities often experience an interruption in the reciprocity of caring, inadvertently cut off when they enter the unfamiliar surroundings of a residential health care system. This transition from the give and take of caring to being completely cared for often leads to a breakdown of meaning, a loss of identity, and loneliness. This article addresses how an intervention called story sharing can restore the reciprocity of caring. Beginning with a review of the significance and functions of storytelling and listening, a specific story sharing intervention-the mutual sharing of everyday experiences among nurse aides and the nursing home residents for whom they care-is described. The theoretical and practice implications of story sharing are discussed.     

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.     

From Caregivers to Caretakers: The Impact of Family Roles on Ethnicity Among Children of Korean and Chinese Immigrant Families

Scholars have long examined the effects of family and community on ethnicity, but they have less to say on why some children may be more receptive to the positive influences of ethnic communities than siblings within the same family. As more immigrants struggle to adapt to the needs and demands of the new global economy, many families are turning to alternative caregiving arrangements that significantly impact the long-term ethnic identities of the second generation. The article considers how adult-age children of immigrants negotiate the emotional disconnects created by these varying contexts of care depending on their individual role within the family and how it shapes their views on ethnicity and culture in their own adult lives. The study focuses in-depth on fourteen semi-structured, in-person interviews with adult-age children of Asian immigrant families in the NY-NJ metropolitan area. Depending on their social status, children of immigrants are integrated into their families: as cultural brokers expected to mediate and care for their family members, as familial dependents who rely on their parents for traditional caregiving functions, or as autonomous caretakers who grow up detached from their parents. I argue that because of their intense engagement with family, cultural brokers describe their ethnic-centered experiences as evoking feelings of reciprocated empathy, whereas on the other end, autonomous caretakers associate their parents’ ancestral culture with ethnocentric exclusion. Depending on how they are able to negotiate the cultural divide, familial dependents generally view their parents’ culture and immigrant experiences through the hierarchical lens of emulation.     

Young adult carers: a literature review informing the re-conceptualisation of young adult caregiving in Australia

The experiences of young adult carers (YACs) have been vastly under-researched, particularly within Australian caregiving literature. This article explores the existence, extent and nature of informal young adult caregiving in Australia, defining YACs as individuals aged between 18 and 25 years who provide unpaid care or support to family members living with chronic illness or disability. The aim of this article is to provide a foundation for the re-conceptualisation of YACs as a distinct carer cohort who, without suitable recognition and specifically targeted support, may experience significantly reduced future life opportunities. The traditional, narrative-based review will first redefine YACs in accordance with overseas literary definitions and will then explore the complex nature and extent of young adult caregiving in Australia. Explanations as to why young adults are increasingly undertaking these informal caregiving roles and how YACs differentiate from their non-carer peers will then follow. Finally, three prominent paradigms, namely the clinical, social capital and carers' rights' perspectives, will be presented to establish a greater understanding of the implications, contextual experiences and unmet civil rights of YACs in Australia.     

Punishing Children for Caring: The Hidden Cost of Young Carers

SUMMARY. This paper examines the lives, experiences and needs of children who care - those children under the age of 18 who provide primary care for a sick, disabled or elderly adult in the home. It presents data from a recent study into the lives of these children, their responsibilities, their commitments, their pain and their fears. It paints a picture of neglect both by professionals paid to care as well as by other family members. It suggests that child carers are effectively punished for caring. The paper goes on to examine the implications for child carers of the Community Care Act, finally implemented on 1 April 1993, to raise a number of critical questions about the rights of children who care, and to suggest a number of innovative ways forward, based upon the expressed needs of young carers.     

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.     

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.     

A bit more understanding: Young adults' views of mental health services in care in Ireland

Children and young people in the care system typically experience very high levels of mental health difficulties, yet their views of these difficulties and of mental health services have rarely been explored. For this qualitative study we spoke with eight young adults aged 18 to 27 years with experience of the care system in Ireland about mental health challenges, service experiences, and how they felt mental health services needed to improve. Themes from the interviews illuminated young adults' views of their emotional well-being while in care, and the double stigma of being in care and mental health difficulties. In terms of services, young adults wanted these to be flexible and sensitive to level of need; to offer choice and more congenial environments; to provide more creative routes to engaging young people; and to offer honest, reciprocal, caring communication — treating children in care as one would any child. Recommendations highlight three key needs: an ethic of care in services as well as an ethic of justice; mental health training for all professionals in contact with children in care; and the need to listen, hear and act on what children and young people say.     

Caregiving and Care Receiving Among Older Lesbian,Gay, and Bisexual Adults

Abstract

A survey research design was used to examine caregiving, care receiving, and the willingness to provide caregiving among lesbian, gay, and bisexual (LGB) older adults recruited from community groups. More than one-third reported receiving care from people other than healthcare providers in the last five years; more than two thirds provided care to other LGB adults. Those who had given care were more likely than non-caregivers to give care in the future. The gender and sexual orientation of recipients of future help affected participants' willingness to provide care, as did their education level and style of coping. Participants willing to provide care to older LGB adults perceived such experiences to be less burdensome and more personally rewarding than those who were un-willing to provide care.     

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.     

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.     

Explicit Versus Implicit Family Decision-Making Strategies Among Mexican American Caregiving Adult Children

Changing U.S. demographics make it increasingly vital to investigate experiences of Latinos caring for aging parents, with specific emphasis on how these families, who often value family closeness, make decisions about caregiving. This study investigates relationships among use of implicit versus explicit decision-making strategies, generation since immigration, and orientation toward family. Findings suggest that those with more recent immigration to the United States were more likely than those who immigrated longer ago to describe family decision making about their parents' care as implicit. Those that were classified as using predominately implicit decision making were also found to be not significantly different from those classified as predominantly explicit with regard to their overall support of a collective orientation toward family. There were exceptions to this, however, regarding two specific aspects of orientation toward family: engagement in shared activities with family members and avoiding family conflict by making choices that are consistent with the family values. In both cases those categorized as implicit expressed stronger endorsement of these specific values. These findings suggest that the relationship between family decision-making strategies, generation since immigration, and orientation toward family is more complex than suggested previously in the literature. Implications for future research and practice are offered.