Results by title

Replete with the powerful words of experienced caregivers, Dementia Caregivers Share Their Stories is an essential guidebook for anyone who must attend to the needs of a loved one suffering from Alzheimer's disease or another form of dementia. In these pages, members of caregivers' support groups - representing twenty-six families and a variety of professions and income levels - speak candidly about the challenges they have faced at every step in the caregiving process, from recognizing early symptoms of dementia to dealing with its advanced stages.

Highlighting the ingenuity and resourcefulness of caregivers, the book brims with inspirational stories, practical advice, and creative approaches to problem-solving. Among the issues addressed are:

Becoming a caregiver, whether for a spouse or parent
Dealing with the personality changes caused by dementia, from anxiety and paranoia to hallucinations and impulsive behavior
Keeping dementia sufferers meaningfully involved in life
Handling the emotions and stresses of caregiving
Seeking help through support groups and other sources, including medical professionals, clergy, and other family members The authors, who have both been caregivers themselves, augment their interviewees' stories with connective commentary and their own personal stories. A useful resource section is included to refer readers to associations and help-lines.

“A practical, highly informative, and sympathetic guide.”
—The Washington Post

Most of us will become a caregiver at some point in our lives. And we will assume this role for the most personal reason imaginable: wanting to help someone we love. But we may not know where to start, and we may be afraid of losing ourselves in this daunting task.

Former first lady Rosalynn Carter, a longtime advocate for caregivers and mental health, knows firsthand the challenges of this labor of love. Drawing upon her own experiences and those of hundreds of others whose stories she gathered over many decades, Mrs. Carter offers reassuring, practical advice to any caregiver who has faced stress, anxiety, or loneliness.

Helping Yourself Help Others, reissued here with a new foreword, is as relevant as ever. Long before the COVID-19 pandemic inspired national conversations about the vast undervaluing of unpaid caregiving, the dangers of burnout, and the merits of self-care for relief, Rosalynn Carter was shining a light on these matters and everything else that caregivers confront. Filled with empathy, this encouraging guide will help you meet a difficult challenge head-on and find fulfillment and empowerment in your caregiving role.

Just Care is Akemi Nishida’s thoughtful examination of care injustice and social justice enabled through care. The current neoliberal political economy has turned care into a business opportunity for the healthcare industrial complex and a mechanism of social oppression and control. Nishida analyzes the challenges people negotiate whether they are situated as caregivers, receivers, or both. Also illuminated is how people with disabilities come together to assemble community care collectives and bed activism (resistance and visions emerging from the space of bed) to reimagine care as a key element for social change.

The structure of care, Nishida writes, is deeply embedded in and embodies the cruel social order—based on disability, race, gender, migration status, and wealth—that determines who survives or deteriorates. Simultaneously, many marginalized communities treat care as the foundation of activism. Using interviews, focus groups, and participant observation with care workers and people with disabilities, Just Care looks into lives unfolding in the assemblage of Medicaid long-term care programs, community-based care collectives, and bed activism. Just Care identifies what care does, and asks: How can we activate care justice or just care where people feel cared affirmatively and care being used for the wellbeing of community and for just world making?

Winner of the ASA Race, Gender, and Class section's Distinguished Contribution to Scholarship Award

Winner of the ASA Racial and Ethnic Minorities section’s Oliver Cromwell Cox Book Award

Laboring in the Shadow of Empire: Race, Gender, and Care Work in Portugal examines the everyday lives of an African-descendant care service workforce that labors in an ostensibly “anti-racial” Europe and against the backdrop of the Portuguese colonial empire. While much of the literature on global care work has focused on Asian and Latine migrant care workers, there is comparatively less research that explicitly examines African care workers and their migration histories to Europe. Sociologist Celeste Vaughan Curington focuses on Portugal—a European setting with comparatively liberal policies around family settlement and naturalization for migrants. In this setting, rapid urbanization in the late twentieth century, along with a national push to reconcile work and family, has shaped the growth of paid home care and cleaning service industries. Many researchers focus on informal work settings, where immigrant rights are restricted and many workers are undocumented or without permanent residence status. Curington instead examines workers who have accessed citizenship or permanent residence status and also explores African women’s experiences laboring in care and service industries in the formal market, revealing how deeply colonial and intersectional logics of a racialized and international division of reproductive labor in Portugal render these women “hyper-invisible” and “hyper-visible” as “appropriate” workers in Lisbon.

Most Americans—even those with significant disability—want to live in their homes and communities. Unpaid family members or friends often work as “informal” caregivers, helping those who need assistance— and many feel they have no option but to serve. In contrast, paid personal assistance services workers (PAS) provide a lifeline to those consumers with complex needs and limited social networks. However, there is a crisis looming in the increasing needs for paid PAS and the limited available PAS workforce.

Making Their Days Happen explores disability, health, and civil rights, along with relevant federal and state labor policies related to personal assistance services. Lisa Iezzoni addresses the legal context of paid PAS as well as financing mechanisms for obtaining home-based personal assistance. She also draws upon interviews she conducted with paid PAS consumers and PAS workers to explore PAS experiences and their perspectives about their work. 

Offering recommendations for improving future experiences of PAS consumers and providers, Iezzoni emphasizes that people with disabilities want to be a part of society, and PAS workers who do this low-wage work find satisfaction in helping them achieve their goals.

As many as 30,000 African Americans have sickle cell disease (SCD). Though the political activism of the 1960s and a major 1970s health campaign spurred demands for testing, treatment, and education programs, little attention has been given to how families cope with SCD. This first study to give SCD a social, economic, and cultural context documents the daily lives of families living with this threatening illness. Specifically, Shirley A. Hill examines how low-income African American mothers with children suffering from this hereditary, incurable, and chronically painful disease, react to the diagnosis and manage their family's health care.The 23 mostly single mothers Hill studies survive in an inner-city world of social inequality. Despite limited means, they actively participate, create, and define the social world they live in, their reality shaped by day-to-day caregiving. These women overcome obstacles by utilizing such viable alternatives as sharing child care with relatives within established kinship networks.Highlighting the role of class, race, and gender in the illness experience, Hill interprets how these women reject, redefine, or modify the objective scientific facts about SCD. She acknowledges and explains the relevance of child-bearing and motherhood to African American women's identity, revealing how the revelation of the SCD trait or the diagnosis of one child often does not affect a woman's interpretation of her reproductive rights.

An inciteful ethnography of cross-border elder care workers.

The precarious situation in the successor states of Yugoslavia created a specific dynamic in the field of labor mobility. Still, little research has been done in this region on how women, who are older care workers from Serbia or Bosnia commute—often via illegal border crossings—to German households to look after the elderly. In Peripheral Labor Mobilities, Tanja Višic explores this gender-specific migration pattern in the first expansive ethnography of contemporary cross-border elder care in this region. She takes up questions about how the mobility and work practices of women are integrated into the socio-economic networks of the informal care work sector while also looking at worker confrontations with labor laws and border regimes. Illustrative case studies clearly detail culturally specific patterns of perception of care work, family relationships, and the mobility demanded by these labor arrangements.
 

In Unsettled Labors, Rachel H. Brown explores the overlooked labor of migrant workers in Israel’s eldercare industry. Brown argues that live-in eldercare in Palestine/Israel, which is primarily done by migrant workers, is an often invisible area where settler colonialism is reproduced culturally, economically, and biologically. Situating Israeli labor markets within a longer history of imperialism and dispossession of Palestinian land, Brown positions migrant eldercare within the resulting tangle of Israeli laws, policies, and social discourses. She draws from interviews with caretakers, public statements, court documents, and first-hand fieldwork to uncover the inherently contradictory nature of elder care work: the intimate presence of South and Southeast Asian workers in the home unsettles the idea of the Israeli home as an exclusively Jewish space. By paying close attention to the comparative racialization of migrant workers, Palestinians, asylum seekers, and Mizrahi and Ashkenazi settlers, Brown raises important questions of labor, social reproduction, displacement, and citizenship told through the stories of collective care provided by migrant workers in a settler colonial state.