The Influence of Service Factors on Spousal Caregivers' Perceptions of Community Services

The literature clearly denotes that spouses differ from other family members in their reactions to caregiving, their patterns of service use and their assessment of specific services. Yet, despite their prevalence as caregivers, little is known about their unique perceptions of community services and the factors that impact their experiences with the service system. The purpose of this study was to explore the relative influence of (a) spouses' personal factors (e.g., gender, family support) and (b) service factors (e.g., one-on-one professional support), on spousal caregivers' perceptions of community services. The study employed a survey design with a sample of 73 spousal caregivers caring for their partners with dementia at home.

This study found that spousal caregivers have more negative perceptions of the service system when their in-home workers are not informed about their spouses' likes, dislikes and routines. This service factor was the most significant predictor of caregivers' service perceptions. The study further found that most spousal caregivers receive fewer than five consultations from a non-medical professional over a one year period. While spouses longed for more professional support, this service factor was not uniquely associated with service related stress. The policy and practice implications of these findings are discussed.     

Social-economic context of parent care: explaining Chinese caregivers' psychological and emotional well-being

This paper explores Chinese familial caregivers' depression and subjective burdens among the current caregivers. Data were collected in 1997-1999 with 110 caregivers who were then taking care of physically dependent parents or parents-in-law. Regression analyses were conducted to assess the factors that influence caregivers depression and subjective burden. Findings suggest that family and individual economic conditions are related to caregivers' depression. Caregivers' involvement in caregiving tasks is associated with caregivers' subjective burden. Poorer self-perceived health is related to higher report of caregivers' depression. The author argues that poorer health and unemployment at the time of drastic social and economic changes in China may have created psychological and emotional anxieties and depression for caregivers. The lack of financial and social stability may have deleterious effect for current caregivers in the future when they grow older and have to be cared for by their one-child generation children.     

Relationships Among Caregiving,Income, Gender,and Health: A Cross-Sectional Examination of a Representative Sample of Older Americans

Although there is substantial evidence to support the effect of burden on caregivers, few studies have compared caregivers to their noncaregiving counterparts on the basis of health and well-being outcomes. This study examines the relationship between caregiving and health and whether other factors may have stronger influence on well-being measures. Using a nationally representative sample of older adults in the United States (N = 3,005), this study examines relationships between caregiving status, gender, and income, and 9 outcomes (self-rated physical and mental health, time since seeing a doctor, time since most recent pap smear or prostate-specific antigen [PSA] test, depression, loneliness, stress, anxiety), using logistic and linear regression models. Results support that paradoxically, caregiving was associated with increased likelihood of PSA test in male caregivers, although data also indicated higher levels of anxiety and stress, as might be expected. Income was associated with 8 of 9 outcomes, and gender predicted depression, anxiety, stress, and self-rated mental health. The study highlighted the importance of psychosocial stressors, such as income and gender, on the health outcomes of older adults who may be caregiving. Considering complexity of unique experience is necessary to accurately assess vulnerability to poor mental health or health-related outcomes.     

Institutionalizing Dementia Victims:

The purpose of this study was to identify factors associated with caregivers' perceived likelihood of institutionalizing dementia victims. Forty-five primary caregivers of noninstitutionalized victims completed questionnaires dealing with sociodemographic characteristics of the victim and caregiver, the level of impairment and several variables related to the caregiving situation. Most of the caregivers were spouses (64%), females (62%) and their mean age was 64.5 years. The statistical analyses revealed that anticipated institutionalization was greater if the victims were older, their impairment had progressed rapidly and rendered them more dysfunctional. Likelihood of institutionalization also was greater if the caregivers were not the victims' spouses, the caregivers experienced more burden, and if the victims' relationship with the caregivers was less close. The qualitative data identified two paradoxical aspects of the caretakers' subjective experiences a love-hate conflict and premature versus delayed institutionalization. Recommendations for future research include longitudinal studies and a broader range of variables related to the effects of caregiving.     

Depressive Symptoms among Former Spousal Caregivers: Comparing Stressors,Resources, and Circumstances of Caregiving Cessation among Older Husbands and Wives

Little research focuses on the mental health of caregivers (CGs) who stop providing care to their community-dwelling spouse. We examine depressive symptoms of former primary CG spouses who stopped caregiving over a two-year follow-up period when the care recipient (CR): (1) no longer has functional problems; (2) continues having functional problems; or (3) dies. Using data from the Health and Retirement Study (2000–2014), we located 2,370 couples who were both 50+ at baseline and where one partner provided help with ADL and/or IADL limitations but did not do so two years later. OLS regressions stratified by gender indicated that both male and female former spousal CGs whose CR died had significantly more depressive symptoms than those who ceased caregiving when their spouse did or did not still have functional problems. Former wife CGs who were older and whose husbands had more baseline ADLs had fewer follow-up depressive symptoms; wife CGs whose husbands had a nursing home stay had more depressive symptoms. Former husband CGs who had provided longer monthly hours of care had fewer follow-up symptoms. Findings underscore the importance of targeting mental and physical health services to both former caregiving husbands and wives, especially after spousal death.     

Chinese American Family Caregivers’ Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers’ perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers’ perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers.     

Quality of Relationships Between Care Recipients and Their Primary Caregivers and Its Effect on Caregivers' Burden and Satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.     

Quality of relationships between care recipients and their primary caregivers and its effect on caregivers' burden and satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.     

Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden

ABSTRACT

Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.     

Exploring how workplace and social policies relate to caregivers’ financial strain

Informal caregiving is a critical component of the US long-term care system, but can have significant negative impacts on caregiver employment, finances, and well-being. An online survey of Colorado caregivers was piloted in 2016–17 to explore whether workplace and social policies such as access to paid family leave and public health insurance can buffer the negative financial impacts of caregiving and help caregivers to remain in the workforce. Using standardized measures, the survey assessed caregivers’ employment and financial status, well-being (physical and mental health, caregiver strain, benefits of caregiving), access to workplace supports, and covariates (e.g., caregiver demographics, health, social support, and service utilization). Ninety-five caregivers, recruited through community agency partners, completed the survey. Respondents were predominately female (89%), middle-aged (M = 57), non-Hispanic White (64%) or Latino/a (22%), and caring for a parent (40%) or spouse (30%) for over one year. Half (51%) reported working full- or part-time jobs, while 16.4% had stopped working because of caregiving. In multivariate regression modeling, predictors of financial strain included the care recipients’ financial strain and the caregiver’s reduction or ceasing of work. Medicare may be protective to minimize caregivers’ need to reduce or cease work. Implications for caregivers’ ability to stay engaged in the workforce and prepare for their own retirement are explored.     

Transitions in Caregiving: Evaluating a Person-Centered Approach to Supporting Family Caregivers in the Community

Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.     

Identities in Transition: Women Caregivers in Bereavement

Population aging and longevity due to medical advances over the past few decades have meant that the approximately 44 million caregivers in the United States and eight million caregivers in Canada must provide more intensive levels of care and for longer periods of time. Consequently, caregivers are often profoundly affected by their caregiving role in emotional, psychological, physical, and financial ways. Thirty years of research on this population have helped to create a caregiver profile and identify the significant challenges for caregivers. One area explored to a much lesser extent is the postcaregiving period, when the caregiver transitions into a period of bereavement. This period can be particularly challenging for caregivers given the commitment inherent in the caregiving process. Research has shown that the emotional reactions of caregivers as well as practical challenges do not end with the death of the care recipient. In fact, complex realities, tensions, and responses continue well after the death into the postcaregiving period. This study of bereaved women caregivers explored their lived experiences in the postcaregiving phase. One central theme emerged and suggested that the experience of caregiving had an effect on the caregivers’ identities, which then influenced their bereavement processes and experiences.     

Challenges to and Strategies for Formal Service Utilization among Caregivers in an Underserved Community

Family caregivers face enormous challenges when attempting to oversee the medical, legal, financial, and daily affairs of loved ones with chronic or life-limiting illness. While formal services and agencies exist to assist caregivers with some of these tasks, caregivers in underserved communities do not utilize these services, or utilize them with unsatisfactory results. This study used focus groups (N = 5 groups) with underserved, minority caregivers (N = 22) to explore their experiences related to care provision, including barriers to support service use and challenges navigating systems related to the broad spectrum of caregiving demands. Thematic content analysis revealed three main themes: (1) prior difficulties with formal service use, (2) difficulties navigating financial, legal, and medical systems, and (3) caregivers’ personal strategies to address challenges associated with formal service use and systems navigation. Findings from this study identify underserved caregivers’ challenges in utilizing formal services, as well as caregiver-identified strategies for supporting their caregiving activities.     

Mosaic of difference: enhancing culturally competent aging-related knowledge among social workers

The professional literature has not adequately addressed the behavioral and social factors that contribute to different coping outcomes for African American elder caregivers as compared to non African Americans. Awareness and understanding of these unique experiences would better prepare professionals to work with such clients. This study examines the predictors of emotional distress among 46 African American women who provide care to dependent elderly parents. Multivariate statistical analyses show that elder caregivers' rating of quality of life, their years of caregiving, as well are their poor heath constitute significant predictors of risk for depression. The results of the study provide support for the inclusion of more culturally appropriate measures of caregiver distress, and provide insights to inform social work practice, policy and research concerning African American female elder caregivers in the 21st century.     

Attitudes Toward Spousal Caregiving in Late Adulthood

Abstract

The study dealt with differences in attitudes toward spousal caregiving among pre-retired (n = 269) versus retired (n = 250) Israelis. Attitudes toward spousal caregiving at times of illness were examined from three perspectives: Commitment to caregiving, perceived harmful effects of caregiving, and delegation of responsibility for caregiving. Compared with the pre-retired group, the retirees revealed higher levels of commitment and showed less of a tendency to delegate responsibility for caregiving. At the same time, they perceived caregiving as having more harmful effects. In addition, different variables were found to explain these attitudes among both groups of participants. Among the pre-retired participants, equality in household tasks contributed most toward explaining commitment to spousal caregiving. Among the retired participants, in contrast, past assistance from the spouse was one of the most significant variables. For both groups of participants, past assistance from the spouse and equality in division of household tasks were the best predictors of perceived harmful effects. With regard to delegating responsibility for caregiving, the most salient variables among both groups of participants were marital tension and equality in division of household tasks. No gender-based differences were found in attitudes toward caregiving.     

Mosaic of Difference

Summary

The professional literature has not adequately addressed the behavioral and social factors that contribute to different coping outcomes for African American elder caregivers as compared to non African Americans. Awareness and understanding of these unique experiences would better prepare professionals to work with such clients. This study examines the predictors of emotional distress among 46 African American women who provide care to dependent elderly parents. Multivariate statistical analyses show that elder caregivers' rating of quality of life, their years of caregiving, as well are their poor heath constitute significant predictors of risk for depression. The results of the study provide support for the inclusion of more culturally appropriate measures of caregiver distress, and provide insights to inform social work practice, policy and research concerning African American female elder caregivers in the 21st century.     

Continuing to Pay: the Consequences for Family Caregivers of an Older Person's Admission to a Care Home

This paper aims to discuss the reasons why caregiving in the community had ended for a sample of dependent older people, two-thirds of whom had dementia. Comparisons are made between the situation of a spouse caring for a partner and a daughter or son caring for a parent in a separate household. Spouses in the study had often sustained a greater burden before caregiving collapsedthan had daughters or sons. They were less likely, however, to have had support from the home care service. When caregiving in the community ended and the dependent older person entered a care home, family caregivers themselves often had a financial price to pay. Currently spouses have a legalliability to contribute to a partner's care costs. The implementation of this liability depended on individual local authority policies and the views of the individual social worker doing the financial assessment. Because of the UK's means-testing rules, daughters and sons were often penalizedbecause a parent's assets that they might have inherited had to be used to meet the care home costs. Resentment at being disinherited was related to the daughter's or son's family situation. Those with children or grandchildren themselves were far more likely to be angry than those without children.     

Caregiver Stress and the Elderly: A Familial Perspective

This paper examines the activities and perceptions of 41 spouses and adult daughters seeking psychological and social intervention with a frail spouse/parent. Findings indicate that spouses were involved in more "hands-on" care and identified the marital relationship or their own physical abilities as sources of caregiver stress. Daughters were less involved in direct care, although overall levels of care remained comparable, and identified responsibilities outside the caregiving relationship as their primary source of stress. The significance of the caregiver's familial status in developing treatment strategies that address caregiver stress are examined.     

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

ABSTRACT

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the “diagnostic phase,” (2) the “explorative phase,” (3) the “adaptive phase,” and (4) the “closure phase.” The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.