The Potential of Information Technology to Navigate Caregiving Systems: Perspectives from Dementia Caregivers

Technologies designed to support caregivers of adults with Alzheimer’s disease and related dementias (AD/RD) have been developing at an increasingly rapid pace. However, little remains known about caregivers’ perspectives on how technologies can and should help them navigate larger service systems they interact with to engage in caregiving. This study involved in-depth interviews and a beta test of an AD/RD caregiver app to learn more about how they currently use technologies and how potential technological features and functions can best meet their needs. Thematic findings suggest a conceptual model for designing AD/RD caregiver technologies. The findings suggest that eHealth and individual technologies may not fully meet the needs of caregivers as they navigate the larger systems within which they provide care. Findings highlight the need to develop technologies for caregivers that are effective, easy to use, and more widely disseminated – especially for caregivers from disadvantaged backgrounds.     

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.     

Caregiving Load and Respite Service Use: A Comparison between Older Caregivers and Younger Caregivers

Study aims were to explore differences in predictors of respite care use between older (aged 65+) and younger caregivers (aged 18–64 years), and associations between caregiving load and respite care use using multivariate logistic regression analysis and unpaid caregiver (n= 10,500) data from the 2009 California Health Interview Survey. Caregiving load comprised number of care recipients, weekly hours in caregiving, and caregiving duration. Variables with a significant association with respite care for older caregivers were female gender, income, and health insurance. For younger caregivers, respite care use associations were with ethnicity, caregiving relationship, education, and availability of substitute help.     

Caregiving Around the Clock: How Women in Nursing Manage Career and Family Demands

Nursing is considered a woman friendly profession; however, career advancement in nursing, as in other fields, is predicated on masculine models of promotion, making mobility difficult for working mothers. To learn more about how women negotiate caregiving responsibilities at home and at work, focus groups were conducted with 26 ethnically and socioeconomically diverse registered nurses, licensed vocational nurses, and aides. Three themes emerged from these discussions: tension between the value nurses assigned to paid caregiving and societal devaluation of this work; "costs" of paid caring and emotional labor on family life; and the presence of both obstacles to and opportunities for career advancement. Caregiving experiences were shaped by professional status. Implications for women's well being and career advancement are discussed.     

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.     

Familial caregivers of older adults

Caregivers of older adults face many obstacles as they balance family, career, and caregiving demands. Caregivers are at an increased risk for burden, stress, depression, and a variety of other mental and physical health complications. It is not uncommon for caregivers to receive some form of pharmacological therapy to treat the physical and mental health changes that may occur throughout their caregiving career. However, while pharmacological forms of treatment are invaluable, medications only may not be sufficient to treat the needs of caregivers. As such, geriatric professionals also have a responsibility to intervene with caregivers through psychosocial interventions. This paper provides an overview of caring, a summary of evidence-based psychosocial interventions for family caregivers of older adults, and recommendations for future interventions.     

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the ‘live’ discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer’s disease, who experienced a ‘live’ discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual’s terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a ‘live’ discharge.     

老人的居住模式与子女的赡养行为

本文使用2006年全国社会综合调查的抽样数据,分析了老年人的居住模式、与子女的居住距离和儿女数量对子女赡养行为的影响。研究发现,老人的居住模式和居住距离并不明显影响子女给予的经济支持,但会影响子女在日常照料和情感慰藉方面给予的支持。有同住子女的父母可以得到子女更频繁的关心和照顾,而空巢家庭的父母从子女处获得的日常照料和经济支持则较少;子女居住得离父母越近,则越经常给予父母日常照料和情感慰藉。研究也发现,子女给予父母各方面照料的频繁程度不受兄弟姐妹数量的影响,独生子女并不比非独生子女更频繁地照顾父母。     

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.     

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.     

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.     

Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n?=?77), individuals caring for an in-law (n?=?26) and a comparison group of noncaregivers (n?=?1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.     

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.     

Making a home, finding a job: investigating early housing and employment outcomes for young people leaving care

This paper presents findings from a new study of outcomes for young people leaving care funded by the Department for Education and Skills. It reports findings for a sample of 106 young people in relation to progress made in housing and employment some 12–15 months after leaving care. The generally poor employment outcomes of care leavers are acknowledged, but ingredients that make for success are also highlighted, including the value of settled care and post‐care careers, sound career planning and, significantly, the value of delaying young people’s transitions from care. Early career paths also interconnect with how young people fare in housing, in developing life skills and with other problems in their lives after leaving care. Housing outcomes were more encouraging and predominantly shaped by events after leaving care, and faring well in housing was the factor most closely associated with positive mental well‐being in young people. Some groups that are at risk of faring badly are identified, including young people with mental‐health problems, young people with persistent offending or substance misuse problems and, in some respects, young disabled people. The implications of these findings for leaving care services are considered.     

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.     

Children's Attachment Relationships with Day Care Caregivers: Associations with Positive Caregiving and the Child's Temperament

In this study, children's attachment relationships with their professional caregivers in center day care were observed for 48 children. We explored whether more positive caregiving was associated with a more secure attachment relationship and whether this association was stronger for more temperamentally irritable children compared to less irritable children. Trained observers coded the attachment relationship in the day care setting using the attachment Q-sort. The observational record of the caregiving environment was used to assess children's individual experience of positive caregiver–child interaction in the classroom. When caregivers showed more frequent positive caregiving behavior, children showed more secure attachment behavior toward their primary professional caregiver. Temperament was not related to attachment security, nor did it serve as a moderator. Consequently, no support for Belsky's susceptibility hypothesis was found.     

Grandparent caregivers

Although grandparent caregiving is not a new phenomenon in the United States, there has been a dramatic increase in grandparent-headed households in the last two decades. Many of these care providers are older and feel somewhat unprepared to raise a new generation of children. As a result, grandparent caregivers are at risk for multiple physical, mental, and emotional problems due to the stresses and strains of care provision. This article summarizes characteristics of grandparent caregivers in our society, the challenges that they face, and how organizations are attempting to assist these older adults with their care provision responsibilities. Recommendations for future research and intervention design will also be discussed.     

Grandchildren Caring for Grandparents: Modeling the Complexity of Family Caregiving

ABSTRACT

This study focuses on grandchildren (Generation 3 or G3) caring for grandparents (Generation 1 or G1) and uses agent-based modeling to conceptualize and test a model of two factors—capability and motivation—that may affect a G3's decision to provide care for a G1. We tested our conceptual model and found that the simulated proportion of G3 caregivers has concurrent validity with existing empirical data. In experiments conducted with the validated model, we investigated universal- and targeted-policy changes (tax credit for caregivers) and found that although the universal-policy change increased G3 caregiving overall, a policy change targeting low- and middle-income caregivers was even more successful.