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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.

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.

The purpose of this study was to identify contextual factors that affect the ability of caregivers to provide necessary supports to mentally ill individuals. Context was defined here as the socially patterned arrangements of peoples' everyday lives and the social and cultural meanings attached to them. Three contextual areas of caregiver burden were explored: race, role responsibility, and relationship between caregiver and the mentally ill individual. Using a stress process model as a guide for our analysis we examined the role of contextual factors, primary stressors and social supports as predictors of several dimensions of caregiver burden: objective financial burden, subjective financial burden, and household disruptions. Analyses were based on interviews with 219 caregivers of persons with severe persistent mental illness who were part of randomized clinical trial of outpatient commitment (OPC) combined with community based treatment. The findings provide evidence of the importance of environmental context in structuring different aspects of caregiver burden, in particular the influence of race and relationship with the client. Parents and spouses experienced more financial burden and household disruptions than other relationships and African American caregivers reported more subjective financial burden than whites. African American caregivers also were more tolerant of client behaviors than whites. Instrumental social support and help with the client were predictors of caregiver burden. The latter was interpreted as evidence of a support mobilization effect.

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.

Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.

This chapter will review the evaluations of the newly developed elderly care system in Japan, Long Term Care Insurance, and its social implications with the focus on demographic change.

By reviewing literature, this chapter will examine how demographic and social change over the years has impacted the features of caregivers. Then, how this policy change has demedicalized the aging process will be described. Finally, this chapter will evaluate whether this insurance has shifted the responsibility for elderly care from the family to society as the governmental slogan advertised.

The new insurance has offered more options in different services and established a new norm of self-reliance and determination for one’s own aging however it is doubtful if this new insurance has shifted the responsibility from family to society.

Applying the implications of policy reforms for elderly care in Japan to the United States, one can assume the traditional U.S. norms and values can facilitate effective utilization of the elderly care system. However, since each nation faces different problems with its specific condition, continuous studies and observations on the relationship between elderly care, immigration issues, and demographic changes will be necessary in order to offer more specific suggestions for each aging nation.

As Japan’s new insurance scheme for the elderly has been studied by many aging nations, recommendations for more comprehensive plans are suggested including building a community-based support system into the Long Term Care Insurance scheme to prevent social isolation and respond to emergency situations for the elderly.

People with chronic conditions faced a type of double jeopardy during the COVID-19 pandemic. Their pre-existing health conditions made them more likely to become severely ill – and more likely to be admitted to intensive care, intubated, and die – if infected with SARS-CoV-2, the virus that causes COVID-19. At the same time, access to needed screening, testing, and treatment was often limited due to the cancelation of primary care services by healthcare providers and systems overwhelmed by the need to treat patients with COVID-19. Patients with chronic conditions feared being exposed to COVID-19 while receiving care. The resulting stress, fear, and anxiety made the management of chronic diseases even more difficult. Several subsets of patients with certain medical conditions, including immunodeficiencies and disabilities, were particularly impacted. The COVID-19 pandemic, and the response to it, also impacted support and services available to caregivers and heightened stress, particularly among parents and caregivers.

International rates of child maltreatment, particularly for children with disabilities are difficult to determine due to a lack of centralized data bases, a tendency to not keep consistent records of disability characteristics in cases of suspected maltreatment, and in extreme cases, because maltreatment is not acknowledged or addressed publicly (Bonner et al., 1997; Morris, 1999). Therefore, most of the data on prevalence rates of maltreatment in disabled children are from western cultures such as the U.S., Canada, and the U.K. There is some evidence to suggest that the rates internationally are probably at least equal to those in the U.S. samples (Cooke & Standen, 2002; Gringorenko, 1998). Finklehor (1994) found that the rates of sexual abuse were consistent across nations for both males and females. The nations in that study included most European countries, Canada, Dominican Republic, Australia, New Zealand, and South Africa. On the other hand, Forrester and Harwin (2000) note that measuring child maltreatment internationally is nearly impossible due to the varying cultural norms, national resources, and the tendency for many forms of maltreatment to go unnoticed. They suggest that an alternative to measuring maltreatment internationally may be to evaluate each nation’s willingness to both address issues regarding the rights of children and to provide services to children who are maltreated.