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Family members provide the bulk of care to persons in later life, representing the vast majority of caregivers. However, studies confirm that men with a history of divorce are less likely than married men to view family members as potential caregivers. This chapter presents findings from a qualitative study on the experiences of 21 ex-wives who chose to provide mostly end-of-life care to their ex-husbands in mid- and late-life. We examine questions about the situational and motivating factors behind ex-wife caregivers’ decisions, and provide, as background, findings about their pre- and post-divorce relationships. Relational outcomes of the caregiving situation also are considered. Several themes emerge, including patterns of proximity and continued contact post-divorce, despite often chaotic former marital relationships; a desire to spare children from the burdens of care; and an opportunity to renew communication or connections with family through the process of caregiving. Implications of our findings include the need to acknowledge ex-spouses as potential caregivers and better understand the enduring bonds between ex-spouses.

This study compared different types of full-time caregiver (e.g., children, older adults, COVID-19 patients) and subgroups (e.g., disability, race/ethnicity, sexual orientation) in the United States during the COVID-19 pandemic for potentially meaningful distinctions.

Data from the 9,854 full-time caregivers identified in Phase 3.2 (July 21–October 11, 2021) of the US Census Household Pulse Survey (HPS) were analyzed in this study using multinomial logistic regression to examine relationships between caregiver types, marginalized subgroups, generation, and vaccination status.

The prevalence of caregiving was low, but the type of full-time caregiving performed varied by demographic group (i.e., disability, race/ethnicity, sexual orientation, gender, generation, and vaccination status). The relative risk of being a COVID-19 caregiver remained significant for being a member of each of the marginalized groups examined after all adjustments.

To date, the HPS has not been analyzed to predict the type of full-time informal caregiving performed during the COVID-19 pandemic or their characteristics. Research limitations of this analysis include the cross-sectional, experimental dataset employed, as well as some variable measurement issues.

Prior informal caregiver research has often focused on the experiences of those caring for older adults or children with special healthcare needs. It may be instructive to learn whether and how informal caregivers excluded from paid employment during infectious disease outbreaks vary in meaningful ways from those engaged in other full-time caregiving. Because COVID-19 magnified equity concerns, examining demographic differences may also facilitate customization of pathways to post-caregiving workforce integration.

The purpose of the present study is to investigate whether family caregivers with a stronger sense of coherence (SOC) who are caring for community dwelling older adults with cognitive impairment are less likely to use mental health services. An adaptation of the Anderson behavioral model of access to health care was employed as a conceptual framework. Data were collected for 304 impaired older adult/family caregiver dyads. Caregiver mental health service use and sense of coherence were measures as well as predisposing factors (age, gender, race, education, type of familial relationship, family size, and co-residence with impaired family member), enabling factors (self-reported awareness of services, travel times to mental health services, social support, and insurance), and need factors (chronic health conditions and distress). The impaired elder’s age, level of physical impairment, and level of memory impairment were also examined. Logistic regression results indicated that caregivers who have a stronger SOC were less likely to use mental health services (OR=0.91, p=0.006). Other significant independent predictors of mental health service use were social support (OR=0.34, p=0.032) and caregivers aiding family members with higher levels of physical impairment (OR=1.14, p=0.033). The results of this study support clinicians and planners developing mental health services that use SOC to mitigate the detrimental effects of caregiving. Future research is needed to target effective measures to positively manipulate this variable.

The purpose of this study is to investigate the informal micro-level mechanisms through which caregivers maximize their health literacy and caregiving skill-set, particularly in cases of emergent, pervasive health disorders. Specifically, I investigate how important micro-level social factors, such as lay self-education and local community networks, mitigate extensive experiences of medical uncertainty that are associated with caring for a child with autism. This study theorizes a series of processes of becoming lay health care professionals (HCP), which serve as effective health care interventions and ways to secure vital resources for patients and their families.

This study uses qualitative research methods in the form of 50 individual intensive interviews with primary caregivers of at least one child under the age of 18 with an official autism diagnosis, as well as two years of participant-observation at two primary sites that are autism parent and caregiver resource meetings, both located in Northern California.

This study first demonstrates the major institutional limits and gaps involved in health-related caregiving for children with autism. Next, I define the processes through which caregivers challenge these institutional constraints and fight for life altering resources for their families, which include becoming a lay diagnostician and expert caregiver. Here, I demonstrate a sophisticated set of health literacy skills and key local community-based ties that caregivers develop and rely on, which affords families the tools to overcome diverse institutional obstacles in health-seeking and health care access.

The families in this study are predominantly white, middle-class, and reside in California. For future research, the scope of the study could be expanded by increasing the sample size and including greater geographic and demographic diversity.

This study contributes vital, yet missing, pieces to the autism puzzle, which currently focuses on prevention, the fight for a so-called “cure,” and the role of vaccines in disorder prevalence. In the meantime, families are living with autism each day and are struggling for understanding and knowledge, and to secure adequate support services. In doing so, this study sheds light on current institutional gaps and limits in health care and delivery for children with autism, and suggests specific effective health care interventions applicable to other cases of emergent illnesses and disorders.

Guided by a life course theoretical perspective, this study aimed to examine associations between providing caregiving for a young or adult son or daughter with special needs and multiple dimensions of physical health status among married midlife and older adults, as well as moderation of these associations by gender and marital quality (i.e., marital strain).

Regression models were estimated using data from 1,058 married adults aged 33–83 (National Survey of Midlife in the U.S. (MIDUS), 2005).

Parental caregiving for a young or adult child with special needs (in contrast to no caregiving) was linked to poorer global health and more physical symptoms among both fathers and mothers. Father caregivers reported slightly more chronic conditions than noncaregiving men, regardless of marital quality. By contrast, mother caregivers reported a much higher number of chronic conditions when they also reported a high level of marital strain, but not when they reported a low level of marital strain.

Overall, results provide evidence from a national sample that midlife and older parents providing caregiving for a child with special needs are at risk for poorer health outcomes, and further tentatively suggest that greater marital strain may exacerbate health risks, particularly among married mother caregivers.

The rapid growth of mass incarceration in the United States means that a historically unprecedented number of children are exposed to paternal incarceration. Despite a growing literature investigating the intergenerational consequences of incarceration, little research collects information from the children who experience paternal incarceration. In this chapter, we describe an ongoing data collection effort, the Jail & Family Life Study, a longitudinal in-depth interview study designed to understand the consequences of paternal incarceration for families and children. Part of this study involves conducting in-depth interviews with 8- to 17-year-old children of incarcerated fathers during and after the father’s incarceration. First, we document the challenges and strategies to gaining access to children of incarcerated fathers, paying particular attention to the role of children’s mothers and caregivers in facilitating this access. Second, we document the challenges and strategies to developing rapport with this group of vulnerable children. Third, we describe the opportunities that children can provide for researchers. Taken together, these findings suggest that it is both challenging and imperative to incorporate children into research on the collateral consequences of incarceration.

Preferences of both Alzheimer patients and their spouse caregivers are related to a willingness-to-pay (WTP) measure which is used to test for the presence of mutual (rather than conventional unilateral) altruism.

Contingent valuation experiments were conducted in 2000–2002, involving 126 Alzheimer patients and their caregiving spouses living in the Zurich metropolitan area (Switzerland). WTP values for three hypothetical treatments of the demented patient were elicited. The treatment Stabilization prevents the worsening of the disease, bringing dementia to a standstill. Cure restores patient health to its original level. In No burden, dementia takes its normal course while caregiver’s burden is reduced to its level before the disease.

The three different types of therapies are reflected in different WTP values of both caregivers and patients, suggesting that moderate levels of Alzheimer’s disease still permit clear expression of preference. According to the WTP values found, patients do not rank Cure higher than No burden, implying that their preferences are entirely altruistic. Caregiving spouses rank Cure before Burden, reflecting less than perfect altruism which accounts for some 40 percent of their total WTP. Still, this constitutes evidence of mutual altruism.

The evidence suggests that WTP values reflect individuals’ preferences even in Alzheimer patients. The estimates suggest that an economically successful treatment should provide relief to caregivers, with its curative benefits being of secondary importance.

Dementia is characterized by the progressive decline in cognitive and daily functioning. Although the decline is often the defining characteristic of dementia in biomedical models, several scholars highlight the preserved skills of persons with dementia. Identity, or a sense of self, is among the areas relatively preserved in the later stages of dementia. It is the window through which caregivers understand the subjective experiences of persons with dementia.

This qualitative exploratory study highlights the value of social relationships, particularly the role of the Filipino family in recognizing personhood and maintaining identity in dementia care. Preserving identity entails understanding the person’s unique characteristics that reflect one’s sense of self. In a highly collectivistic culture, such as the Philippines, the family is crucial to preserving identity and overall well-being in dementia. This study explores the perspectives of 15 Filipino caregivers as regards caring for a family member with dementia. Participants discuss changes in family structure and the challenges in dementia care. More importantly, they delve into strategies used to preserve identity and encourage life participation in their loved one with dementia. Essential Filipino cultural values in dementia care, such as collectivism, religion, and the values of filial piety and utang na loob (or debt of gratitude) are further discussed.

Purpose: Caregivers are at risk of increased burden, and caregivers who provide care for a long duration may be at higher risk than short-term caregivers. The purpose of this study was to examine the relationship between caregiving duration and caregiver burden, as well as whether the relationship was moderated by paid leave.

Design/methodology/approach: We utilized a sample of employed caregivers from the Caregiving in the US 2015 dataset (n = 585) collected by the American Association of Retired Persons. Using a structural equation modeling approach, we examined the study relationships.

Findings: The authors found that caregiving duration was associated with increased burden. Although there was no direct relationship between paid leave and caregiver burden, paid leave buffered the association between caregiving duration and caregiver burden.

Research limitations/implications: This study is limited by a cross-sectional design. Longitudinal data collection efforts are needed to further examine the possible effects of paid leave on well-being and health outcomes.

Practical implications: Findings indicate a potential need to consider developing support programs for caregivers based on how long they need to provide care.

Societal implications: Policies are needed to decrease the burden felt by caregivers, especially those who provide care for a long period of time.

Originality/value: The current study is the first to explore the interrelationships among caregiving duration, paid leave, and caregiver burden.

Purpose – Academic campuses in India in recent years have witnessed an increase in the proportion of older people due to the rise in the age of superannuation of faculty and their cohabitation with older parents. However, such campuses continue to have a skewed program which favor the needs of the younger population. For the present study, a residential academic campus equipped with a health care facility was selected to understand the challenges of the family caregivers of older people residing in it.

Methodology/Approach – Exploratory in-depth interviews were conducted with 154 family caregivers. Secondary data were obtained from the campus hospital records.

Findings – Data revealed that family caregivers experienced various challenges in providing older care in the campus due to unavailability of paid supportive caregivers, lack of community support, and inadequate housing. Though the academic campus has a health care facility, the entitlement rights to it varies among the older people in campus. While the campus health facility was not congenial for family caregiving, it was utilized as a space for providing long-term care. This chapter suggests the need to extend a public heath model of family caregiving in campus.

Research limitations/implications – The study has implication for modifying similar academic campuses in India for facilitating family caregivers of older people.

Originality/Value of Paper – This is the first study of its kind which explored the challenges of family caregiving for older people in academic campuses in India.