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.     

Japan's Radical Reform of Long-term Care

Japan's mandatory long‐term care social insurance system started in 2000. Many important choices about the basic shape and size of the system, as well as a host of details, were necessary when the program was being planned. It represents a reversal from earlier steps toward a tax‐based direct‐service system, and is based on consumer choice of services and providers. The benefits are in the form of institutional or community‐based services, not cash, and are aimed at covering all caregiving costs (less a 10 percent co‐payment) at six levels of need, as measured by objective test. Revenues are from insurance contributions and taxes. The program costs about $40 billion, and is expected to rise to about $70 billion annually by 2010 as applications for services go up. There are about 2.2 million beneficiaries, about 10 percent of the 65+ population. The program has operated within its budget and without major problems for two years and is broadly accepted as an appropriate and effective social program.     

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.     

Intergenerational Care Providers of Non-Institutionalized Frail Elderly

This study reports on the care provided to (41) non-institutionalized frail older persons by their children and/or grandchildren. The study is based on a population of frail elderly persons referred for in-home assessment services to the Iowa Model Gerontology Project in Scott County, Iowa. These referrals were based on the referral sources belief that the older person was at risk for institutional care. The study explores three aspects of intergenerational family caregiving: the characteristics of the off-spring caregivers, their perceptions of both the positive and negative impacts of providing care, and their perceptions of supplementary assistance needed and desired from outside agencies in carrying out the caregiving tasks.     

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.     

Eldercare and employed caregivers: a public/private responsibility?

The National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP, 2004) have reported that 21% of the U.S. population provides family caregiving services to someone over 18 years old. Seventy-nine percent (79%) of these caregivers provide care for someone aged 50 or older. The majority of caregivers work full or part-time, and nearly two-thirds of employed caregivers make work-related adjustments in order to provide care (NAC & AARP, 2004). This article examines eldercare issues of employed caregivers, identifies current public and private policies addressing caregiver needs, presents a process model to assist organizations in creating family-friendly workplaces, and suggests social work roles that support family caregiving.     

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.     

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.     

Caregiver involvement in behavioural health services in the context of child welfare service referrals: a qualitative study

Human service agencies serve a growing number of adults with behavioural health needs. Despite these agencies' key role in identifying need and facilitating services, many individuals do not receive care or end services prematurely. Few studies have explored the experiences of families referred to behavioural health services by such agencies or the extent to which families' perceptions of service need align with those of treatment providers and frontline workers. This study presents findings from a qualitative study of caregivers involved with child welfare agencies who were referred to behavioural health services. Researchers reviewed agencies' case records and conducted in‐depth interviews with 16 caregivers, 9 child welfare caseworkers and 12 behavioural health treatment counsellors. Findings suggest that when deciding to engage in services, caregivers weigh not only their individual and family behavioural health needs but also potential agency intervention, including loss of child custody. Many professionals reported that involvement with a child welfare agency hindered the caregiver's disclosure of behavioural healthcare needs. Implications for managers and practitioners are discussed.     

A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.     

Service Barriers of Chinese Family Caregivers in Canada

ABSTRACT

Family caregiving is a stressful process, especially when the complexity of being an immigrant or ethnic minority is added. This paper examined service barriers experienced by Chinese immigrant family caregivers in Canada and the predictors of different types of barriers. Principle component analysis was performed with the barriers reported loading onto cultural barriers, administrative problems, circumstantial challenges, perceived negative quality of services, and personal attitudes. Multiple regression analysis was used to identify the role of the culture-related factors in predicting service barriers, controlling for socio-demographic status of the caregivers'. The results show that financial factors significantly predicted the number and types of barriers reported by the caregivers. Culture-related factors were significant in predicting the total number of access barriers and the different types of barriers experienced by the family caregivers. The findings indicate the importance of culturally sensitive support for family caregivers in order to reduce the access barriers.     

Caregiver Isolation

Abstract

Caregiving to a partner with Alzheimer's disease results in isolation, which impacts on the help/service seeking behaviors of care givers. In-depth interviews done with caregiving wives found that they experienced multiple dimensions of isolation. A tentative ecological model of the dimensions of caregiver isolation is proposed. Research participants did not engage early in supportive help because they were not aware of their isolation, did not know about available supports, and were not identified by medical or social services personnel as needing support and assistance. Social workers need to be aware of the isolating effects of caregiving and reach out to caregivers to avoid or lessen isolation in their caring role.     

Older Persons’ Views on Using Cash‐for‐Care Allowances at the Crossroads of Gender,Socio‐economic Status and Care Needs in Vienna

The article aims to contribute to understanding social inequalities resulting from familization (or de‐familization) tendencies among cash‐for‐care beneficiaries in a Conservative welfare state. It highlights justifications for choices in accessing and using care in a cash‐for‐care scheme from the perspective of care recipients aged 80 years and older in Vienna. Along key dimensions characterizing care recipients’ experiences, we identify four different user groups, which reflect recipients’ individual characteristics, particularly gender, socio‐economic status (SES), and care needs, and the respective care arrangement. The groups are dubbed: (1) the self‐confident; (2) the illiterate; (3) the dependent; and (4) the lonely. Narrative interviews with 15 frail older people were held in 2014 and analyzed using the framework analysis method. Results show that familiarity with support structures associates with higher SES, while those who depend on others for acquiring information or organizing care express ambivalence in choosing between formal and informal care. Engagement in deciding which care type to use is limited among people of lower SES or with complex care needs, but own experience as informal caregiver for a family member increases care recipients’ long‐term care (LTC) system literacy. Gender differences among care recipients were limited, yet middle‐class female recipients often expressed normative claims for family care from female relatives. We conclude that unconditional care allowance schemes may reinforce existing gender relations, particularly among informal caregivers, as well as underpin socio‐economic differences among LTC users in old‐age. Results also partly question the assumptions of choice and empowerment implicit in many cash‐for‐care schemes.     

Compulsory Income Management in the Northern Territory – evaluating its impact

Australia has been experimenting with constraining the ways in which welfare recipients can spend their income support payments, limiting their ability to access cash and purchase some products. The policy objectives include to reduce spending on alcohol, gambling, pornography and tobacco in favour of meeting ‘basic’ family needs, especially for children, to limit the scope for financial harassment, encourage pro‐social behaviours, and build financial capabilities. In the logic of the programs these outcomes are expected to be manifest at the individual, family and community levels. The policy has primarily impacted on Indigenous Australians as a result of its geographic targeting, although a recent report has recommended a more stringent version of the program be introduced universally to all welfare recipients other than the aged. The largest of these experiments is ‘New Income Management’ in the Northern Territory, which has had more than 35,000 participants since its introduction in 2010. This article reports on the key findings of the major independent evaluation of New Income Management commissioned by the Australian Government.     

Experiences of rural male caregivers of older adults with their informal support networks

More male caregivers are assuming primary caregiving roles for older adults with chronic health conditions. One of the main sources of support for many caregivers is the assistance that is provided by members of their informal support network. Little is known about the relationship between male caregivers and their informal support networks. This qualitative study examines the experience of male caregivers with their informal support networks, specifically looking at two phenomena: (1) Perceptions of the male caregivers about the willingness of their informal support networks to provide caregiving assistance and (2) Willingness of the male caregivers to ask their informal support networks for assistance. Twenty male caregivers were recruited across a rural Midwestern state. Each male caregiver engaged in two interviews that lasted between 60 and 120 minutes. Seven themes emerged from the data about the male caregivers experience with their informal support networks. Results from this study have implications for geriatric health professionals who work with male caregivers to obtain the necessary amount of caregiving assistance.     

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.     

Gerontological Social Work Student-Delivered Respite: A Community-University Partnership Pilot Program

ABSTRACT

This study describes a community-university partnership to support a gerontological social work student-delivered respite program, the Houseguest Program (Houseguest). Houseguest was designed using a community-engaged scholarship model of integrating research, teaching, and service. Houseguest was piloted with a small group of community-dwelling, coresiding dementia caregivers and care recipients. We examined caregivers’ experiences with student-delivered respite using qualitative data analysis. Thematic analysis produced 8 themes: (a) respite from full time caregiving role, (b) information on caregiving strategies, (c) no-cost supportive services, (d) opportunity for care recipients to socialize, (e) tailored activities for care recipients, (f) rapport-building between students and family dyad, (g) reciprocity between students and family dyad, and (h) program continuation. We conclude with a proposed community-engaged scholarship model for dementia caregiving. Through a community-university partnership, Houseguest reduced the impact of caregiver burden and created an opportunity for students to serve families affected by dementia through respite and tailored activities.     

A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer’s disease during natural disasters

ABSTRACT

Since Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer’s disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a “perfect storm” of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.