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.     

Examination of a Psychoeducational Intervention and a Respite Grant in Relieving Psychosocial Stressors Associated with Being an Alzheimer's Caregiver

Alzheimer's disease can be particularly devastating to those who are caring for their loved one with the condition. There have been recent calls for the tailoring of caregiving interventions to examine outcome differences between groups of caregivers and the reporting of effectiveness via longitudinal and specific outcomes. The purpose of this study was to examine 3 interventions (psychoeducational training, a respite voucher-type grant, or their combination) while looking for possible group differences. A total of 367 caregivers participated in the study. Participants completed surveys and questionnaires before the intervention and at a 6-month follow-up. Positive outcomes were found, including lower depression scores, increased support service use, and increased support group usage. Possible effectiveness of the 3 types of interventions and variation among caregiver characteristics are discussed along with implications for future research.     

The Effects of Nursing Home Placement on the Perceived Levels of Caregiver Burden

Providing care for an aging parent can be one of the most fulfilling life experiences for an adult child. It can also be one of the most exhausting physically, emotionally, and financially. A caregiver experiences psychological and emotional changes when their dependent parent or spouse is placed into formal care. This research project uses the Montgomery Borgatta Caregiver Burden Scale, amended with a questionnaire, in a self-administered, anonymous survey to explore perceptions of caregiving burden before and after the nursing home placement periods. This research showed that numerous factors influence caregivers' perceptions of burden and the quality of relationships among family members.     

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.     

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.     

Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism

ABSTRACT

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers’ quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.     

Developing a Faith-Based Caregiver Support Partnership

Caring Together, Living Better (CTLB), a partnership of nonprofit and faith-based organizations, developed a culturally appropriate regional network of supportive caregiver services in the south suburbs of Chicago, IL. This article describes the findings of a mixed-methods evaluation that included network analysis to track network growth and development, tracking of service delivery, assessment of caregiver-related outcomes using standardized pre-post measures, and analysis of change stories elicited from project partners. Results include documentation of network expansion and statistically significant improvements in caregiving self-efficacy and adequacy of help. Story themes highlight participants’ positive experiences with CTLB and improved caregiver quality of life.     

Danger and Dementia: Caregiver Experiences and Shifting Social Roles During a Highly Active Hurricane Season

This study examined disaster preparedness and decision-making by caregivers of community-dwelling persons diagnosed with Alzheimer’s or a related dementia (ADRD). Interviews were conducted with 20 caregivers in South Florida. Twelve of these interviews include caregiving experiences during the highly active 2004–2005 hurricane seasons. Results indicate that persons in earlier stages of ADRD can, and often do, remain engaged in the disaster preparation and planning process. However, during the early stages, persons may also resist evacuation, even if the caregiver felt it was necessary. During later stages of the disease, caregivers reported less resistance to disaster-related decisions, however, with the tradeoff of less ability to assist with preparation.     

Land of forgetfulness: dementia care as spiritual formation

The personal circumstances of dementia caregiving are sometimes experienced as so severely demanding as to be overwhelming. While sustenance within, and recovery from these experiences are increasingly addressed in helpful ways from psychological, emotional, and practical life planning frames of reference, we are still learning how to speak with one another about the spiritual dimensions of this peculiar journey. From a spiritual perspective, the caregiver initially, and frequently perpetually, finds her/himself in a state of spiritual exhaustion. Oddly enough, there are ample resources at hand to address this existential state with wisdom and grace, allowing for the possibility that the caregiver might move from spiritual weariness to enhanced spiritual formation.     

Land of Forgetfulness

Abstract

The personal circumstances of dementia caregiving are sometimes experienced as so severely demanding as to be overwhelming. While sustenance within, and recovery from these experiences are increasingly addressed in helpful ways from psychological, emotional, and practical life planning frames of reference, we are still learning how to speak with one another about the spiritual dimensions of this peculiar journey. From a spiritual perspective, the caregiver initially, and frequently perpetually, finds her/himself in a state of spiritual exhaustion. Oddly enough, there are ample resources at hand to address this existential state with wisdom and grace, allowing for the possibility that the caregiver might move from spiritual weariness to enhanced spiritual formation.     

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.     

Predicting Future Commitment to Care for Frail Parents Among Employed Caregivers

A study of 133 full time employees with parent care responsibilities investigated various factors that could reduce this group's future caregiving commitment to aging parents. Study factors included: caregiver attributes, level of caregiving involvement, job stress, tensions between the caregiver and the dependent parent, caregiver's level of physical and mental strain, and limited support from family and friends. The relationship between the caregiver and the parent was the best predictor of sustained commitment to caregiving. One aspect of the employees' work experience made a small, but important contribution to respondents' future care plans. Those employees who frequently adjusted their work schedule and routine to accommodate parent care demands were less likely to sustain their caregiving commitment. Reasons for these findings are explored and implications for social policy and clinical practice are discussed.     

Eleven Tips to Lighten the Load: Optimizing the Blessing of Family Caregiving

This informal piece offers tips to family caregivers, based on my personal experience as a social work educator who temporarily moved in with my mother, who lives with dementia. Lessons learned are distilled into 11 tips that are respectfully offered to other social work educators who have the blessing and the challenge of caring for their older loved ones.     

Toward Empowerment: ReVisioning Family Support Groups

ABSTRACT

Family support groups (FSG) have been recognized as an important and viable means for responding to the needs of family caregivers. How these groups work, however, is not well understood. The purpose of this qualitative exploratory study was to explore the impact of attending a family support group on the caregiving experience from the perspective of the family member. Personal, semi-structured interviews took place with eleven family members who had participated in at least one FSG. Data was analyzed for themes, using a constant comparative categorizing strategy. This analysis suggests that attending a FSG impacts the caregiving experience in four important ways: helping the family member to construct a self-identity as a ‘caregiver’; promoting a sense of personal competence; fostering the use of formal support groups; and creating a community context within which to experience the caregiving role. Cumulatively, these have the potential to contribute to a sense of empowerment for the family member by helping him or her to reposition the caregiving experience as more than a personal issue and promoting the emergence of a more collective voice.     

Satisfaction,Communication and Affection in Caregiving

Multigenerational caregiving is becoming a prevalent means of caring for moderately to severely impaired elders. Handling the stress created in these arrangements may depend on the relationship between the elder and the caregiver. This study examines components of such relationships and highlights caregiving as experienced by the elder receiving care. Findings 'indicate that improved quality of relationship between elder and caregiver is related to a high degree of elder's satisfaction with the arrangement, whereas level of functioning of the elder is not related to degree of satisfaction. However, findings also suggest that elders fear being a burden, hide their troubles and feelings and generally feel no sense of contribution to the household.     

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.     

Volunteerism and Older Adults

Abstract

This study was designed to examine differences in care-giver and care recipient characteristics, caregiving and work demands and resources, and role strain among Black, Hispanic, Asian, and White employed family caregivers. Significant differences were found with respect to caregiver and care recipient characteristics, types of assistance provided, and workplace support. Minority caregivers were economically disadvantaged and provided higher levels of care. Whites reported higher levels of role strain than Black and Hispanic caregivers, after controlling for caregiver and care recipient characteristics, demands, and resources. The findings indicate that care giving policies and programs must be broadened to incorporate the strengths and needs of ethnically diverse caregivers. Family practitioners need to be able to assess the applicability and differential impact of particular interventions, policies, and benefits, and to design relevant programs for ethnically diverse care-givers and their families.     

Client Suicide

Abstract

Mourning a suicide can be a difficult, complicated experience for family and friends. A therapist's bereavement can be even more complex. The multitude of feelings is often unspoken and/or unattended by colleagues, loved ones, and themselves. This article explores some defenses, both helpful and unhelpful, that one clinician used to process the event.