The costs of family caregiving: implications for geriatric oncology

Older adults with cancer receive considerable care from their family members. The article reviews the types of stressors family members face while caregiving, and what is known about the psychological, physical health, social, and economic costs of caregiving. The benefits experienced by caregivers, and sustained effects on families after bereavement or cancer survivorship are also reviewed. Interventions that are promising in decreasing the costs of caregiving, and implications for research and clinical practice are discussed.     

Family Caregiving of Older People with Dementing Illnesses in Nursing Homes: a Lifeline of Special Care

Objective: Explore the meaning of the care given by family caregivers to family members with a dementing illness after their placement in a nursing home. Method: A constructivist approach, informed by symbolic interactionism, and using grounded theory methods, served as the theoretical and analytical underpinnings of this study. In all, 14 family caregivers (predominantly daughters caring for mothers) were interviewed. Results: There is a dual meaning inherent in family caregiving activities in this context. It is perceived as a lifeline of special care for the family member in the nursing home, and is meaningful and constructive for the caregivers themselves. Conclusion: Understanding this ‘;dual’ meaning of family caregiving activities is highly relevant for health care workers and others who interact with family members in the nursing home situation.     

Caregiving arrangements of older disabled women, caregiving preferences, and views on adequacy of care

The role of women in caregiving to elderly people has focused primarily on their involvement as givers of care. In contrast, this article focuses on older women as recipients of caregiving. Data from the WHAS and the WHAS Caregiving Study are used to describe: the relationship of caregiving arrangements among moderately to severely disabled older women to sociodemographic, health and functional status; the characteristics of primary family caregivers and the assistance they provide; preferences for caregiving arrangements among both care recipients and caregivers; and views on adequacy of caregiving among older women cared for by family. Overall, about one quarter of these women had no caregiver, reflecting the inclusion in the WHAS of women with only moderate functional difficulty, but close to two-thirds relied on family members, and 15% on paid help only. Greater reliance on family was associated with being age 80 or older, black, and living with others. Women with poorer functioning--more ADL and IADL difficulties, difficulty taking medications without help, low cognitive functioning, not emotionally vital--also were significantly more likely to be cared for by family. Caregiving preferences varied among older women and their husband and daughter caregivers. Husbands consistently viewed in-home family help as the best caregiving arrangement regardless of levels of need. Older women and daughter caregivers both saw nursing homes as the best option for people with dementia and substantial care needs. One-quarter of elderly women chose in-home paid help as the best arrangement for meeting ADL/IADL needs. Older women generally held positive views of the assistance they received from family members. Younger women and lower income women were more likely to indicate they received less help than needed.     

Typical and atypical dementia family caregivers: systematic and objective comparisons

This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II) studies. Based on statistical and clinical significance, there were large effects for demographics but no large effects among caregivers or care recipients on clinical and caregiving variables. Non-spouse family members were more likely to be caring for women and unmarried individuals. Grandchildren and nieces/nephews provided care for older care recipients. For care recipients who are unmarried, older, or women, fewer care possibilities may be available; consequently family members other than spouse or children may become their caregivers. Once an individual becomes a caregiver, the clinical experience of dementia caregiving is similar across caregiver types. These findings have implications for clinical care and public policy.     

The transition from caregiving to bereavement: the relationship of care-related strain and adjustment to death

This study examines two competing hypotheses about the relationship between care-related strain and the difficulty adjusting to the impaired relative's death. One hypothesis, and the limited available empirical evidence, suggests that family members who perceive caregiving as stressful will experience some relief when their relative dies because care responsibilities end. An alternative hypothesis, derived from several conceptualizations, posits the opposite relationship, with greater care-related strain predictive of greater strain during bereavement. Panel data from spouse and adult-child caregivers collected before and after the death support the second hypothesis. Respondents who appraise caregiving as more difficult and those who report more negative caregiving consequences for the family assess bereavement as more difficult and report greater bereavement strain for the family.     

Genderaspekte in der Angehörigenpflege

Most people in need of care and assistance are currently still being cared for at home by family members. The majority of family caregivers are women. However, the percentage of men assuming the role of main caregiver at home is increasing. This may point to a change in the distribution of caregiving within the family. The health-related and social stresses and strains affecting cargiving persons also show gender-specific differences and are experienced more frequently and with a higher intensity by female caregivers than caregiving men. Men approach the challenge of caring differently to women and also organize care differently to female family caregivers. Although a high percentage of those providing informal care to family members at home are now men, this fact is hardly appreciated by society. In the specialist literature, caring men are often seen from the perspective of women. This article aims to portray gender-specific perspectives concerning the situation of providing informal care and assistance to elderly people and the stresses and strains that are associated with it.     

American Indian Family Caregivers’ Experiences with Helping Elders

In recent years, a vast literature has accumulated on the negative effects on family caregivers of providing care to elders, while relatively little research has explored caregiving as a positive experience. Only a handful of studies have examined any aspect of informal caregiving among American Indians. This mixed methods study explores the negative and positive aspects of providing elder care among 19 northern plains American Indian family members. These caregivers described low levels of burden and high levels of reward, attributable to cultural attitudes toward elders and caregiving, collective care provision, strong reciprocal relationships with elders, enjoyment of elders, and relatively low levels of care provision. Caregiving manifested as part of a complex exchange of assistance rather than a unidirectional provision of assistance from the family member to the elder. That caregiving emerged as such an overwhelmingly positive experience in a community faced with poverty, alcohol disorders, trauma, and cultural traumatization is testimony to the important roles that elders often continue to play in these communities.     

"You must take the medications for you and for me": family caregivers promoting HIV medication adherence in China

China is experiencing a rapid increase in the incidence of HIV infections, which it is addressing proactively with broad implementation of antiretroviral therapy (ART). Within a cultural context extolling familial responsibility, family caregiving may be an important component to promote medication adherence for persons living with HIV in China. Based on 20 qualitative interviews with persons living with HIV and their family caregivers and a cross-sectional survey with 113 adults receiving HIV care at Beijing's Ditan outpatient clinic, this mixed-methods study examines family caregivers' role in promoting adherence to ART. Building upon a conceptual model of adherence, this article explores the role of family members in supporting four key components enhancing adherence (i.e., access, knowledge, motivation, and proximal cue to action). Patients with family caregiving support report superior ART adherence. Also, gender (being female) and less time since ART initiation are significantly related to superior adherence. Since Chinese cultural values emphasize family care, future work on adherence promotion in China will want to consider the systematic incorporation of family members.     

Paid Family Leave: An Emerging Benefit for Employed Family Caregivers of Older Adults

As our population ages, the ability to take time off to care for an ill family member or close friend without losing income or a job is a growing social, health, and economic issue for American families. Therefore, the need for paid family leave policies for workers with caregiving responsibilities is an important topic for employers and policymakers, in the clinical care of older adults, and at kitchen tables across the United States. Despite this growing need, paid family leave is not available to most workers, and there is no national paid family leave policy. Health care and social service providers have a role in ensuring that family members of their patients with a serious health condition or disability are aware of the potential availability of paid family leave benefits in the states and businesses that provide them. Building a better system of care for older adults means changes not only in health care settings and in long‐term services and supports, but in workplaces too. This article describes the challenges faced by workers with family caregiving responsibilities, explains why paid family leave matters, indicates which states have adopted these protections, and reviews research on existing paid family leave policies. Finally, actions by clinicians and other stakeholders are offered to advance awareness about paid family leave benefits, including coverage for workers with care responsibilities for older people.     

Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers

Analyzing data from more than 1,500 family caregivers from the 1996 National Caregiver Survey, this study documents the ways in which dementia care is different from other types of family caregiving. Not only do dementia caregivers spend significantly more hours per week providing care than nondementia caregivers, they also report greater impacts in terms of employment complications, caregiver strain, mental and physical health problems, time for leisure and other family members, and family conflict. Differential impacts remain even after controlling for intensity of caregiving involvement and sociodemographic factors. Study findings suggest the need to tailor programs and services to the unique challenges faced by dementia caregivers.     

The Compound Caregiver: A Case Study of Multiple Caregiving Roles

Many parental caregivers of an adult with intellectual/developmental disabilities often undertake the role for their entire lifetime. However, there is a lack of recognition of the increasing likelihood that they may become caregivers to their own parents or other family members. A case study highlighting this scenario is presented. Three themes emerge for these unique “compound caregivers” that may result in adverse outcomes in well-being; reduction in social network/support, difficulty of prioritizing caregiving demands, and a reduction in stress resiliency. More research of compound caregivers is warranted. Interventions aimed at reducing the burden felt by compound caregivers could be particularly beneficial during the compound caregiving episode, and could ensure the continuance of the primary caregiving role.     

Educating the next generation of family caregivers through the use of dynamic case studies

Between 2008 and 2016, students in an Introduction to Gerontology course were required to complete a dynamic case study project simulating caregiving arrangement decision making. Students were divided into groups representing typical multigenerational families and were required to determine how to develop caregiving arrangements to respond to an older family member’ s changing levels of need. The assignment concluded with students writing a final paper summarizing what they learned. This study examined the themes emerging from student group case study papers to gain an understanding of the challenges students face in understanding the dynamics of making family-based caregiving decisions. This is of particular importance as many students were seeking careers in human services and would be assisting clients in such decision-making processes, as well as involvement in decision making for their own family members. Themes that emerged from group papers and the implications related to gerontology education and policy are discussed.     

Care taking experiences and social relations of the elderly

This is a qualitative study based on interviews with 18 former caregivers in Vienna. It can be found that caregiving is not restricted to close family members but covers a rather wide range of related and non-related persons. Caregivers usually start their career as middle-aged persons (around 55); due to the length of caregiving, most caregivers have gone past the age of 60 at the end of the caregiving period. Women without competing social responsibilities dominate among caregivers. Three mechanisms of reciprocity seem to be able to generate positive feelings toward the caregiving experience: gratitude from those cared for, balanced interaction, and financial compensations. Only in a very few cases are shared functions between different caregivers or between caregiver and formal services observed. Efforts towards formal services prove to be of little success in supporting the primary caregiver. In the final stage, almost all supported old people enter an institutional environment.     

Extended family caring for children orphaned by AIDS: balancing essential work and caregiving in a high HIV prevalence nations

While over 90 per cent of the 15 million children who have been orphaned by HIV/AIDS are cared for by family members, there is little information about whether adults can meet orphans' essential caregiving needs while working to economically survive. Using a survey we conducted in Botswana of 1033 working adults, we analyse the experience of adults who are caring for orphans. Over one-third of working adults were caring for orphans and many with few financial resources: 82% were living on household incomes below US$10 purchasing power parity adjusted per person per day. Because of their caregiving responsibilities, they were less able to supplement income with overtime, weekend, evening, or night work. At the same time caregiving responsibilities meant orphan caregivers spent fewer hours caring for their own children and other family members. Nearly half of orphan caregivers had difficulties meeting their children's needs, and nearly 75% weren't able to meet with children's teachers. Pay loss at work compounded the problems: One-quarter of orphan caregivers reported having to take unpaid leave to meet sick childcare needs and nearly half reported being absent from work for children's routine health care. This paper makes clear that if families are to provide adequate care for orphans while economically surviving there needs to be increases in social supports and improvements in working conditions.     

Grandmothers' diaries: a glimpse at daily lives

Little information exists about the daily lives of women who are grandmothers, and the differences in daily stresses based on caregiving status to grandchildren. This content analysis examines the stresses of 64 grandmothers as grouped by caregiver status (grandmothers raising grandchildren, grandmothers living in multigeneration homes, non-caregivers to grandchildren) as recorded in three-week diaries. The nature of salient issues and stressful interactions differed by caregiver groups. Grandmothers raising grandchildren reported more stresses related to grandchildren's routines, activities, and school progress, more time pressure, and difficult interactions with grandchildren. The diary entries of grandmothers in multigenerational homes reflected their supplemental role in childcare, and sometimes stressful interactions with other family members. Grandmothers with no routine caregiving to grandchildren reported more involvement with those outside the immediate family. Many general concerns about the well-being of the family represent commonalities in grandmothers despite differences in current caregiving roles to grandchildren.     

Rituals of visiting people with dementia in residential care

Objectives : Visiting a family member with dementia in residential care can be an unpredictable and stressful experience, particularly in the early days of admission and little is known of how carers lessen their distress during this time. Method : A qualitative study of 25 family carers was carried out in which the carers were interviewed on three occasions for more than a year from shortly after their relative entering residential care. Three carer focus groups were also undertaken. Results : Many family carers developed routines in their visiting that indicated five different forms of ritual: repetitive visiting patterns, formalised elements to visits, symbolic caregiving, reward giving and visit reframing. These routines helped carers manage the experience of visiting. From the accounts of family members, residential staff often seemed unaware of the significance of the rituals and unknowingly discouraged them. Conclusion : These findings suggest that visiting involves complex processes that are insufficiently understood and their value underestimated. Strategies are discussed for assisting family carers to sustain their visiting practices. Further research is needed in this area to provide guidance for family members and those working in residential care. Key words: Dementia, ritual, residential care, caregiving, visiting, relationships, communication     

Family caregivers in palliative care

This article defines caregiving broadly to include the informal (ie, unpaid) care provided by family members that goes beyond customary and normative social support provided in social relationships. Family caregivers in particular play significant roles in the care of elders with advanced chronic disease and in the context of palliative and end-of-life care. These caregivers typically are involved in critical medical decisions, provide vital assistance with activities of daily living, and carry out most nonpharmacologic and pharmacologic treatment recommendations for community-based elders. This article describes family caregivers and the costs of care and introduces the stress process model to highlight essential caregiving experiences and needs in the context of palliative care. Common interventions used to support caregivers are highlighted, and the bereavement experience among caregivers is discussed.     

Caregiver stress and noncaregiver stress: exploring the pathways of psychiatric morbidity

PURPOSE: This study examines depressive symptoms among adult children of elderly parents; it views the parents' care needs and child's care activities as two separate stressors, different combinations of which may affect both caregiving and noncaregiving family members. Design and Methods: A sample of 4,380 women and 3,965 men from the first wave of the Health and Retirement Study was analyzed by use of four alternative forms of multiple regression analysis. Using the Center for Epidemiological Studies Depression scale, respondents reported on their depressive symptoms, as well as on parental disability and care provided by themselves, their spouses, and siblings. RESULTS: Noncaregivers reporting severe parental disability were significantly more likely to experience depression symptoms. Evidence of increased manifestations of depression was not found among those caring for severely disabled relatives; nor was it found among those providing care in the absence of severe parental care needs. Having a caregiving sibling was associated with increased CES-D scores among noncaregivers. IMPLICATIONS: In the current literature, personal care needs of a close relative are named among significant disturbances in the lives of caregivers. By extending this approach to members of a family network regardless of caregiver status, this study allows us to distinguish the magnitude of negative outcomes of serious parental care needs while clarifying the impact uniquely attributable to caregiving activities.     

Factors affecting burden of South Koreans providing care to disabled older family members

This study examined the determinants of caregiving burden among South Koreans who care for their disabled older family members. A sample of 1000 primary caregivers taken from the Comprehensive Study for Elderly Welfare Policy in Seoul, South Korea was analyzed. Independent variables included the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment among care recipients, care recipients' functional abilities, financial adequacy and caregivers' degree of social support. Hierarchical regression was used to predict the levels of caregivers' burden. Similar to western care providers, South Korean caregivers who were in poor health and who had little informal social support, inadequate financial resources and more weekly caregiving hours were more likely to experience intense caregiving burden. Burden was also positively related to the functional and cognitive disabilities of care recipients. The results of this study indicate that certain aspects of caregiving are unique to South Koreans. Daughters-in-law were the most common caregiver within the sample which indicates that South Korean eldercare is non-consanguineous. Identifying predictors of South Korean caregivers' burden promotes a more comprehensive understanding of cultural experiences in caring for older adults.     

Reducing the distance in distance-caregiving by technology innovation

Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1) the elder and the family caregiver(s) may reside in the same household; or 2) the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.