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.     

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.     

Family Caregivers of the Elderly

Two groups of primary family caregivers were interviewed; one whose older relatives received assistance from an inhome chore services program, the other whose relatives had been terminated from service due to budget reductions. Both groups of caregivers were found to be actively involved in providing care to their older relatives. The assistance that caregivers provided was similar whether or not their relative received chore services. No significant differences were found in the type of tasks they provided nor in the amount or length of time they have provided care. The data suggest that there may be limits to the assistance that these caregivers can provide and that care of the elderly beyond such limitations needs to be supplied by other sources. Caregiving may be influenced both by the particular circumstances of the caregiver and the individual needs of the older relative. These findings support the notion that there is a need for shared responsibility between the family and government, based on an understanding of the tasks that family caregivers are best able to provide.     

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.     

Primary Caregivers and Chinese Elders’ Demand on Community Services

Abstract

The most influential model explaining the elderly’s service use is Andersen and Newman's model. But the applicability of the model on elders’ demand on community services has not been tested, especially in developing countries such as China. This research tested the applicability of the model by studying how primary caregiver relations to the elderly influence Chinese community-dwelling elders’ demand on community services. With a total of 2,124 respondents aged 65 and older who reported primary caregivers, six primary caregiver relations were examined: son, spouse, daughter, daughter-in-law, unmarried son and daughter, and other. Data came from the 2014 wave of the Chinese Longitudinal Healthy Longevity Survey (CLHLS). Results indicated that: (1) Elders cared for by daughters-in-law showed a significantly stronger tendency of expecting community services than elders cared for by other caregivers among both rural and urban areas. (2) Elders were least likely to expect community services in two cases: urban elders taken care of by daughters and rural elders whose primary caregivers were unmarried sons and daughters. Since Chinese elders cared for by different caregivers tended to seek community care in different manners, future research may study how suitable community service programs can be developed to well meet the needs of various elderly groups.     

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.     

Coping Strategies and Caregiving Outcomes Among Rural Dementia Caregivers

We studied the coping styles by which family caregivers living in rural areas of Alabama deal with the demands of caring for an older relative with dementia. Data were obtained from a sample of 141 caregivers through the random-digit dialing telephone survey. Two coping styles were identified: deliberate coping and avoidance coping. Deliberate coping was related to higher life satisfaction scores and, avoidance coping was related to lower life satisfaction scores and higher caregiver burden scores. Avoidance coping appeared to moderate the effects of caregiver health on caregiver burden. Social workers should pay greater attention to caregivers with dysfunctional coping styles.     

Unmet home care service needs of rural older adults with Alzheimer's disease: a perspective of informal caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

Family Influence on Caregiver Resistance,Efficacy, and Use of Services in Family Elder Care

This research investigated how resistance to use of services attributed to family members and primary caregiver self-efficacy and resistance influenced actual use of services. Data were analyzed from questionnaires completed by 224 persons engaged in informal elder care in the community. Tests of 6 hypotheses revealed that family influence on caregivers had a consistent, important influence on behavior and views of caregivers. Family resistance to use of formal services framed caregivers' feelings, preferences, and decisions ranging from their own perceived self-efficacy to actual obtainment of help outside the family. Professionals must include family members in their dialogue with primary caregivers about their plans for elder care. Suggestions for interventions to better understand family and caregiver resistance are discussed.     

Unmet Home Care Service Needs of Rural Older Adults With Alzheimer's Disease: A Perspective of Informal Caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

Depression and caregiver burden among rural elder caregivers

Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.     

More than therapy: The link between adverse childhood experiences,social support,and therapeutic services

Adverse childhood experiences (ACEs) have a cumulative effect on physical, emotional, and social well‐being throughout the life course. ACEs also impact parenting practices, which may contribute to intergenerational cycles of trauma. Access to child mental health services and caregiver social support are two protective factors that may reduce the burden of ACEs. To advance understanding of the relationships between caregiver social support and child mental health services among caregivers with ACEs, we interviewed 13 caregivers of young children receiving outpatient mental health services. Thematic analysis revealed the integral role of therapeutic providers in the social support circles of caregivers with high ACE scores. Caregivers frequently named therapeutic providers as the first point of contact in a problem situation. Implications for social work research, clinical practice, and advocacy are discussed.     

The FACES Project: an academic-community partnership to improve end-of-life care for families

This article reports on a research partnership between a community-based hospice and a graduate school of social work. The purpose of the collaboration was to design and test a tool for assessing caregiver strain and resources in families caring for older adults receiving hospice home care services. Eighteen hospice home care social workers interviewed 162 caregivers for the study and provided their own assessment of the tool's clinical utility. Both strengths and challenges of the collaboration are evaluated and implications are discussed for social work practice and research, particularly academic-community research partnerships.     

Do Caregivers Benefit More From Educational and Volunteer Activities Than Their Noncaregiving Peers?

Informal caregivers are a critical component of the US long-term care system, but caregivers often experience poor physical and mental health as a result of strain from the caregiving role. Engagement in community-based educational and volunteer activities contributes to older adult well-being, but previous studies have not assessed whether the effects of these types of engagement are different for older adults who are also caregivers. Using a sample of participants in educational and volunteer activities sponsored by a national nonprofit organization, we find that participants who are caregivers report more benefit from these community-based activities than their noncaregiving counterparts. Connecting caregivers to existing community-based activities may be an efficient strategy for improving caregiver well-being.     

Support for Carers of Older People: The Roles of the Public and Voluntary Sectors in Sweden

This study examines the support services offered to informal caregivers, whether directly or indirectly, in Sweden over the period of a special investment initiative between 1999 and 2001. Data were collected in a Swedish county using two separate mail questionnaires in 1999 and 2001. The first questionnaire was addressed to each municipality in the region. The second questionnaire was sent to a random sample of voluntary organizations in the area. The findings showed that only the municipalities provided direct forms of relief service, day care and financial support. The voluntary organizations’ support for carers focused on support groups and training as well as services for older care users themselves. There was a significant increase between 1999 and 2001 in the number of municipalities providing information material and training for carers and using professional caregiver consultants. On the one hand, the Swedish public social care system appears to be following the international pattern in paying more attention to informal caregivers and investing in support services for them. On the other hand the findings did not show any growth in support provided by the voluntary organizations. Here Swedish welfare is dissimilar to other European countries, where it is increasingly common for voluntary organizations to play an important role as providers of support for carers.     

What Is Known About Dementia Care Recipient Violence and Aggression Against Caregivers?

Aggression is a known behavior in dementia, but there is little in the literature about risk to home-based caregivers in situations where severe aggression is present. This article examines this issue with a focus on what is known and where further research is needed. Rates of severe aggression by dementia care recipients against caregivers are estimated at greater than 20%, and may be the strongest predictor of nursing home placement. Measures containing both assessment of behavior and objective measures of caregiver trauma are needed, along with interventions aimed at educating and protecting caregivers while respecting communicative properties of behavior.     

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.     

Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

ABSTRACT

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a ‘live discharge’ from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.     

Measuring Family Caregiver Perceptions of Support in Caring for Children and Youth With Mental Health Concerns

ABSTRACT

This correlational study assessed how families of children with mental illness perceived the levels of support they received from informal and formal resource providers and the associations between perceived support and child outcomes. Adult caregivers (N = 904) of youth receiving public mental health care services were administered the Family Caregiver Perceptions of Support Scale developed by the authors to assess family caregiver perceptions of support prior to and at termination of services. Factor analysis identified three types of caregiver anticipated supports: informal support resources, support for treatment plan influence, and health care resources. The domains were significantly and positively associated with one another but did not uniformly correlate with youth mental health outcomes. The study provides preliminary evidence that treatment gains in youth mental health outcomes are observed when caregivers perceive support in treatment processes. Suggestions for future research are made, stressing the importance of caregivers and providers working together and describing needs related to future scale improvements.