A review of the biopsychosocial aspects of caregiving for aging family members

With the ever-increasing growth in the aging population, the need for care providers will also continue to rise. Many of these caregivers will provide informal care to family members and friends at a price to their own physical, psychological, and social well-being. This article examines the phenomenon of caregiving and provides a review of the biological, psychological, and social impacts of caregiving to care providers. George Engel’s biopsychosocial model is explored to examine the biological, psychological, and social factors that can affect a caregiver’s health and well-being. This article further explores social work practice implications and strategies for future intervention to reduce caregiver burnout and aid in their self-preservation.     

Losing Selves: Dementia Care as Disruption and Transformation

Caregiving is a process of transformed identities and reconstructed relations. The disruption of Alzheimer's disease affects both the individual with dementia and the person providing care. One becomes enselfed in dementia, the other transformed into a caregiver. Using data from twenty qualitative interviews with family caregivers, this article traces the transformative process by which the previous relational selves of both participants become casualties of the disease. Findings suggest that the ill person in this dyad is silenced through dementia, leaving the caregiver narratives to become the morality tales of transformation from disorder to order, from havoc to meaningful interaction. By becoming caregivers, family members construct value in their struggles to negotiate the disorder of illness and recreate meaningful and affirming selves and relationships.     

Kinship care and issues in permanency planning

Kinship caregivers are a child-care resource for families experiencing stress or temporary parenting due to illness, incarceration, or death of a parent. This article examines whether and how felt caregiver burden influences the reported propensity of caregivers to want to adopt the children in their care. Kinship caregivers who were enrolled in KinNET completed the survey (N = 102) and the data were entered anonymously into SPSS for analysis. Their mean age was 57.51 years (SD = 10.13), 95% were female (SD = .19), and two-thirds were non-white (SD = .73). Using “likelihood of adopting the child in my care,” as the outcome variable in the linear regression analysis, caregiver’s age, monthly income, and total hours employed were significant predictors. Total pressures, family service needs, and physical problems scales were not statistically significant predictors. The adjusted R square was .439 and significant (.006). Understanding the factors that are predictive of adopting children in kinship care will help programs target services more effectively. Helping kinship caregivers and the children in their care is also important in promoting their health and social well-being.     

Children’s Mental Health Providers’ Perceptions of Mental Health Literacy Among Parents and Caregivers

Mental health disorders are prevalent among children, yet many do not receive treatment. Parents and caregivers play a vital role in recognizing mental health disorders in children and accessing treatment. But a substantial number of parents lack essential knowledge of children’s mental health disorders, including risk factors, symptom recognition, and treatment options. Little focus has been given to parents in the children’s mental health literacy literature. The purpose of this article is to begin filling that gap by using a survey to describe the perceptions of child and family mental health providers’ perceptions regarding the amount, accuracy, and origin of mental health literacy in the parents of the children they treat. The impact of those perceptions on the work of providers is also explored. Eighty-seven mental health providers completed a survey to assess their perceptions of parent mental health literacy in the area of children’s mental health. Providers perceived parent mental health literacy as low, inaccurate, and inconsistent. In addition, providers indicated that parents rely on informal sources of support, such as friends and family for information about children’s mental health. Implications for social work researchers, practitioners, and the children and families they serve are discussed.     

Self-efficacy and social support for psychological well-being of family caregivers of care recipients with dementia with Lewy bodies,Parkinson’s disease dementia,or Alzheimer’s disease

The study identified factors associated with depressive symptoms in family caregivers of persons with dementia with Lewy bodies, Alzheimer’s disease, or Parkinson’s disease dementia. An Internet-based survey generated 606 response sets. Regression analysis indicated that care recipients’ memory and behavioral problems, caregivers’ self-efficacy, grief, and tangible, emotional, and affectionate support were significantly associated with caregivers’ depressive symptoms. Self-efficacy mediated caregiver burden to improve psychological well-being. Social support mediated the association between caregiver grief and psychological well-being. Social workers can provide psychoeducational interventions to help caregivers to manage emotional distress and improve capacity to manage tasks related to the dementia.     

Quantity and Quality of Gestural Input: Caregivers’ Sensitivity Predicts Caregiver–Infant Bidirectional Communication Through Gestures

Children's use of pointing and symbolic gestures—early communication skills which predict later language—is influenced by frequency of adults’ gestures. However, we wonder whether, like language, the sensitivity of adult–child interactions is also important for encouraging child gesturing, rather than simply quantity of adult gestural input. Furthermore, children's use of gestures influences qualities of adult–child interaction, eliciting greater responsiveness and richer communication. Thus, we investigated the moderating role of nonparental caregiver sensitivity on the relationship between caregivers’ and infants’ use of pointing and symbolic gestures. We observed 10 infants (ages 6–19 months) over 8 months with a total of 24 student caregivers completing short‐term internships, recording adult and child use of pointing and symbolic gestures. We used longitudinal growth models to examine change in gesturing and moderating roles of caregiver sensitivity in the relations between caregiver and child gesturing behavior. Caregivers’ sensitivity moderated effects of caregivers’ symbolic gestures on infants’ pointing and symbolic gestures, and the effects of infants’ pointing and symbolic gesture frequency on caregivers’ gesture use. Thus, caregivers’ gestures are most effective in supporting child gestures when in the context of sensitive interactions. Sensitivity is central to supporting children's early communicative behaviors, including pointing and symbolic gestures.     

Perceived overload as a predictor of physical strain among spousal and adult child caregivers of frail elders in the community

ABSTRACT

Family caregivers of frail elders can experience physical strain associated with caregiving. Identifying correlates of caregiver strain can provide an important impetus for tackling the causes and providing effective interventions. Utilizing data from the 1999 National Long-Term Care Survey, the current study examined correlates of caregiver physical strain among 956 family caregivers, using the stress process model. As multiple regression analyses indicated, the caregiver’s perceived overload predicted greater strain for both spousal and adult child caregivers. For both groups, common correlates of physical strain were caregiving demands, the caregiver’s perceived overload, and limitations placed on the caregiver’s life. The results demonstrate that the family relationship of the caregiver (spouse or adult child) leads to variations and dynamics in caregiver strains, due to qualitatively different relationships.     

Racial and Ethnic Differences in Family Caregiving in California

Abstract

Family caregivers are the main source of long-term care for older persons in the United States. At the same time, cultural values and beliefs shape decisions surrounding who provides care and whether families use formal support interventions to assist the caregiver. The current article examines how the family caregiving experience differs among racial and ethnic groups in terms of caregiver characteristics, service utilization, caregiver strain, and coping mechanisms. Telephone interviews were conducted in English and Spanish with a random sample of 1,643 respondents in California who provide care to someone age 50 or over. Bivariate analyses showed evidence of ethnic differences in the demographic characteristics of caregivers, intensity of care provided, caregiver health, level of financial strain, religious service attendance, formal service utilization and barriers to formal services. Odds ratios showed that White and African American caregivers were about two times as likely to use formal caregiver services as were Asian/Native Hawaiian/Pacific Islander and Latina American caregivers. Implied by these findings is the need for further understanding of caregiver service needs among diverse racial and ethnic groups.     

What Are Strategies to Advance Policies Supporting Family Caregivers? Promising Approaches From a Statewide Task Force

Family caregivers are the cornerstone of the long-term supports and services infrastructure in the United States, yet they often contend with many challenges related to this role. Public policy has been slow to change, leaving many caregivers vulnerable to health and economic consequences. Using models of policy making, we identify barriers to advancing policies that support family caregivers and overcome policy drift. We draw on discussions from the California Task Force on Family Caregiving as it prepares state policy recommendations. Identified strategies include identification of caregivers in health care and workplace settings to promote political consciousness raising, collecting and reporting on data that frame caregiving as a policy problem, borrowing policies and language from overlapping fields to emulate their policy successes, and presenting supportive caregiver policies as solutions to other policy problems. By presenting specific strategic approaches to advance caregiving policies, we provide tools to address the growing gap between caregiver needs and policy responses.     

Self-identifying as a caregiver: Exploring the positioning process

There is a huge body of research focused on family caregivers. Underpinning this body of knowledge is the assumption that there exists some distinct entity known as a ‘caregiver’. Drawing on data generated through in-depth qualitative interviews with forty seven family caregivers, this paper will examine the usefulness of this self-identification to family members. Questions asked of the data included: how does one come to self-identify as a caregiver, what does it mean to be a caregiver, and how does affiliation with this self-identity influence the experience of caring for an older or frail family member. The analysis suggests that a recognition of oneself as a caregiver is produced primarily through interactions with others; without external influence, family members will often see the work they are doing as simply an extension of their relational role. Affiliating oneself as a family caregiver appears to have positive benefits which include promoting effective use of community support services and creating a sense of belonging and connection to a broader community. This can be empowering. However, an unintended consequence of assuming the position of caregiver may be the inadvertent discounting and marginalization of the person requiring care. Positioning theory is introduced as a useful conceptual frame for understanding the process and implications associated with self-identifying as a caregiver.     

FamilyLive: Parental Skill Building for Caregivers with Interpersonal Trauma Exposures

Mental health treatments for emotionally traumatized children incorporate family and caregiver-child therapy sessions to promote child recovery and minimize developmental disruption. Such sessions require that caregivers regulate their emotions to remain productively engaged in the therapeutic process. However, caregivers with histories of unresolved interpersonal trauma have difficulty with emotional regulation. Interpersonal trauma also negatively affects the ability to reflect on one’s own and others’ feelings and intentions. This limitation interferes with caregiver engagement in psychotherapy relationships aimed at supporting child trauma work. FamilyLive is an innovative caregiver-focused family therapy model that uses a one-way mirror, a specially trained reflecting team, structured routines and individualized verbalizations to address this complex clinical phenomenon. Guided by the literature on attachment and trauma, FamilyLive has yielded anecdotal successes and positive pilot results. FamilyLive is a viable approach to engaging caregivers with histories of interpersonal trauma in trauma-focused child and family therapy relationships.     

Health Care innovation and children in poverty: lived experiences of caregivers of children with disabilities in a medicaid-serving ACO

This paper reports the results of a qualitative study of caregivers of children with disabilities enrolled in a Medicaid-serving accountable care organization (ACO). The state of Ohio mandated ACO enrollment for Medicaid-eligible children with disabilities in 34 of 88 counties effective July 2013. Research participants were queried in focus groups and individual interviews about their children’s care experiences and care coordination after enrollment. Most told researchers that they themselves are their children’s care coordinators, and many indicated that resource scarcity is a more pressing problem than fragmented care. Data analysis identified a theme of scarcity and four categories of insufficiency that made caregiver efforts on behalf of their children more difficult: a lack of health services under managed care, resource constraints on other agencies and programs for which families were eligible, a lack of financial support, and a lack of family support. A conceptual framework places ACO care coordination among more upstream factors and identifies ways in which ACOs serving Medicaid populations may wish to address the social determinants of the well-being of children with disabilities. Implications for future research are discussed.     

Factors Associated With Caregivers’ Use of Support Services and Caregivers’ Nonuse of Services Sought

Informal caregivers may face barriers accessing services like respite care, training, and support groups. Using multinomial logistic regression, I modeled caregivers’ probability of using all services sought (“all services used”) and nonuse of any services sought (“any unused services”) as a function of caregiver and care-recipient characteristics. Care-recipient health and function, especially dementia and need for medical task assistance, were associated with all services used and any unused services, and any unused services were more likely among adult children caring for their parents, caregivers of Black and Hispanic older adults, caregivers providing intensive care, caregivers living in metropolitan areas, and residents of states that spend more on increasing access to caregiver services under the National Family Caregiver Support Program. Regularly scheduled caregiving was associated with higher likelihood of all services used, but not with any unused services. Steps should be taken to increase access for caregivers who provide intensive care, care to dementia patients, or assistance with medical tasks and for Hispanic families.     

Depression and Missed Work among Informal Caregivers of Older Individuals with Dementia

Although providing informal care can negatively affect caregiver emotional health and lead to depression, the association between caregiver depression and missed work is unknown. We use data from the National Longitudinal Caregiver Survey to examine the relationship between caregiver depression and missed work among informal caregivers for older veterans with Alzheimer’s disease or vascular dementia. Two-part models are used to estimate the expected hours of work missed among working caregivers. Caregiver depression is statistically significantly associated with the likelihood and amount of time missed at work, resulting in an average of an extra half-day of work missed per month. While the effect of caregiver depression on work missed is modest, it represents another possible benefit from interventions to support caregivers.     

Family and Friends as Respite Providers

Abstract

Consumer-directed service options in home- and community-based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers “direct-pay” program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.     

Kinship Care for Children of a Parent With a Mental Illness

Little is known about “hidden” kinship caregivers of children of a parent with a mental illness (COPMI). An exploratory study surveyed 56 COPMI caregiver members of a kinship center administered by a school of social work in a large public university. The COPMI sample was a subset of a larger kinship caregiver study. Nearly one in four caregivers was providing COPMI kinship care. The COPMI caregivers reported numerous child behavioral crises and decreased caregiver physical and emotional health since they began providing care. Practice, policy, and research require development to increase support for COPMI caregivers and their families.     

“No Matter What I Do They Still Want Their Family”: Stressors for African American Grandparents and Other Relatives

Grandparents and other relatives increasingly assume the role of primary caregiver to minor children. This study interviewed family members caring for children whose parents were not available due to parental incarceration, other involvement in the criminal justice system, and substance abuse-related issues. Interviews with 25 African American women examined the impact of caregiving including stress and depression. Stress included caregiver issues related to finances, time allocation, care responsibilities, and concerns about the absent parent, as well as issues specific to the children related to school concerns, child behavior, and emotional problems. These stresses were examined along with caregiver depression scores using the Center for Epidemiological Studies Depression Scale, which indicated more depression related to caregiver illnesses, older caregivers, and care for older and a larger number of children. This study suggests that caring for these children is both challenging and stressful, and caregivers are at risk for depression and other mental health concerns. Health and service providers should carefully assess the needs of caregivers when determining the needs of families where children are under care of nonparental relatives. Family-based services are needed that include caregiver supports as well as support for children.