Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Sense of Need for Financial Support and Respite Services among Informal Caregivers of Older Americans

ABSTRACT

Financial support and respite services are two of the most frequently reported types of help that caregivers of older adults need. Using an expanded health behavioral model, this study examined the effects of predisposing, enabling, and needs factors on caregivers' sense of need for these two types help. Data were drawn from the 1999 National Long-Term Care Survey and included 1,058 caregiving dyads in the community. The results indicated that caregiver-related factors more than care recipient–related factors affected caregivers' sense of need to seek both types of help. The findings direct to two important implications for long-term care policy for and practice with older adults: improvement of service for caregivers and service delivery systems.     

The Long‐Term Effects of Caregiving on Women's Health and Mortality

Caregivers experience numerous mental and physical health effects from the stress of providing care, but we know little about whether these problems persist in the long term and whether long‐term effects differ across caregiving contexts. Using the National Longitudinal Survey of Mature Women, we examined the relationship between caregiving and long‐term patterns of depressive symptoms, functional limitations, and mortality. We also explored the health effects of caregiving in‐home versus out‐of‐home and by caregiver/care‐recipient relationship. Analyses show that in‐home spousal and parental caregiving predict increased depressive symptoms and functional limitations in the long term but are unassociated with mortality, whereas caregiving outside the home is unassociated with later depression and functional limitations but predicts a lower risk of mortality. This study highlights the usefulness of approaching stressful experiences such as caregiving from the life course perspective, viewing them as processes that unfold over time within specific contexts that may carry delayed or cumulative consequences.     

The family caregiving context among adults with disabilities: A review of the research on developmental disabilities,serious mental illness,and traumatic brain injury

ABSTRACT

A majority of adults with serious disabilities are cared for in the home by family members. Guided by an ecological framework, this article presents the findings of a literature review of research on family caregiving and family support for adults with disabilities. This review included 33 research studies published between 2000 and 2015 focused on three disabilities: Developmental disabilities, serious mental illnesses, and traumatic brain injury. A synthesis of the findings underscores the critical role that family caregivers occupy in addressing the needs of their loved one with a disability; however, the needs of the caregiver are insufficiently met by existing service approaches. A better understanding of the unique needs and strengths of the family support context of caregivers and care recipients is needed, giving greater attention to ethnic, racial, and cultural considerations in future research.     

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.     

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.     

Predictors of Health Information Needs among U.S. Mainland and Puerto Rican Caregivers

Stroke caregivers often do not have the information necessary to adequately manage the stroke recovery process at home. We explore how the educational needs of stroke caregivers vary by race, ethnicity, and place, and their association with caregiver characteristics. We surveyed 276 stroke caregivers living on the U.S. Mainland and in Puerto Rico to assess their educational needs related to stroke recovery. Caregivers report a high overall need for educational materials with Puerto Rican stroke caregivers having greater needs compared to whites and African Americans on the Mainland. Increased caregiver educational needs are associated with greater desire to institutionalize, less positive appraisals of caregiving, greater use of coping strategies, and greater burden. All caregivers can benefit from educational materials, but special attention to island-dwelling Puerto Rican caregivers may provide additional benefit. Future research and interventions should focus on tailoring educational materials for race, culture, and other caregiver characteristics.     

Dementia Caregiving in the Context of Late‐Life Remarriage: Support Networks,Relationship Quality,and Well‐being

Caregiving research has not accounted for increasingly diverse and complex marital and family histories of older Americans. The authors examined social relations and care‐specific positive and negative support networks among late‐life remarried wife dementia caregivers (N = 61) to determine associations among network structure, relationship quality with and support received from network members, and global assessments of family and stepfamily disagreement on caregiver well‐being. Own family and friends predominated in the social relations and positive networks. Although over half (54%) of respondents included a stepfamily member in their positive networks, stepchildren comprised the largest group (35%) in the negative networks. Larger negative networks and actively negative interactions were related to greater caregiver burden, and more global disagreement with stepfamily was associated with greater depression and burden. The findings illustrate the complex nature of support and the value of targeted examinations of caregiving support dynamics among late‐life remarried older adults and stepfamilies facing health demands.     

Decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia

Purpose: To describe factors influencing decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia. Design and Methods: Individual interviews were used to collect data with 30 Chinese family caregivers of older adults with dementia in Taiwan. Data were analyzed using thematic analysis. Results: Factors influencing caregivers' decisional conflict included the Chinese value of filial piety, limited financial resources and information, placement willingness of the older adult, family disagreement, distrust of nursing home care quality, and limited nursing home availability. Factors influencing caregivers' decisional conflict post placement included disappointment with nursing home care quality and self-blame for the placement decision. Implications: Findings resulting from this study indicate that Chinese family caregivers experience decisional conflict during the nursing home decision making process as well as after the placement decision. It is important to provide appropriate decision support beginning before admission and across the trajectory of the older person's nursing home stay in order to decrease decisional conflict and facilitate a more positive decision making process for caregivers, family members, and older adults with dementia.     

“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.     

Dance of the Dedicated Bottom

Abstract

LGBT caregiving for midlife and older adults facing chronic illness or disability as well as the development and evaluation of interventions targeting LGBT caregivers remains fundamentally unexplored. Caregivers regardless of their sexual orientation or gender identity often juggle multiple roles and responsibilities leading to increased stress and distress. However, largely due to discrimination and discriminatory policies, many LGBT caregivers face barriers at multiple levels of service provision that can exacerbate stress and negatively impact caregiver and care recipient quality of life. This article highlights many of these obstacles and provides examples of intervention strategies designed to assist LGBT caregivers ranging from interventions aimed at the individual and interpersonal levels of service provision to changes needed at the social policy level. As an example of an individual or interpersonal level of intervention designed to assist LGBT caregivers, the SURE 2 framework is presented and more thoroughly discussed. Given the diversity of the LGBT community, the article ends with ways to extend or adapt SURE 2 as well as suggesting that the time has come to develop and test a variety of interventions for LGBT caregivers.     

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.     

Transition from Home Care to Nursing Home: Unmet Needs in a Home- and Community-Based Program for Older Adults

A major effort is under way nationally to shift long-term care services from institutional to home- and community-based settings. This article employs quantitative and qualitative methods to identify unmet needs of consumers who transition from a statewide home- and community-based service program for older adults to long-term nursing home residence. Administrative data, care manager notes, and focus group discussions identified program service gaps that inadequately accommodated acute health problems, mental health issues, and stressed family caregivers; additional unmet needs highlighted an inadequate workforce, transportation barriers, and limited supportive housing options. National and state-level policy implications are considered.     

Transition from home care to nursing home: unmet needs in a home- and community-based program for older adults

A major effort is under way nationally to shift long-term care services from institutional to home- and community-based settings. This article employs quantitative and qualitative methods to identify unmet needs of consumers who transition from a statewide home- and community-based service program for older adults to long-term nursing home residence. Administrative data, care manager notes, and focus group discussions identified program service gaps that inadequately accommodated acute health problems, mental health issues, and stressed family caregivers; additional unmet needs highlighted an inadequate workforce, transportation barriers, and limited supportive housing options. National and state-level policy implications are considered.     

Restorative home environments for family caregivers

Caregiver stress negatively affects caregiver health and the overall quality of in-home caregiving. While environmental interventions such as home modifications help caregivers manage stressful functional aspects, interventions for managing stressful emotional aspects are unexplored. Frequently, caregiving responsibilities restrict caregivers' spatial and temporal range of restorative activities to their familial residential environment. In a first attempt to explore the restorative potential of a house in which caregiving occurs, this paper reports experiential attributes of restorative environments from environmental psychology and healthcare design research. It discusses the relevance of restorative attributes to the socio–physical residential context of caregiving using three caregiver needs: need for a temporary escape, meaningful social support, and a sense of control. This conceptual exploration of the restorative potential of the residential caregiving environment offers a base for investigating targeted architectural and functional interventions that might complement current advances in home modifications and respite services.     

Most Successful Intervention Strategies for Abused Older Adults

ABSTRACT

In this Project CARE study, intervention plans for 83 cases, with a total of 473 strategies, are analyzed in a qualitative content analysis method. The 473 strategies are designed and implemented by an abuse-trained, multidisciplinary, health and social service agency, home care team. Each strategy is rated by the team for its acceptance/refusal by clients and levels of success. The most accepted and successful strategies for abused older adults are concrete: nursing and other medical care and homemaking assistance, followed by empowerment strategies, such as support groups for abused older adults, information about rights and resources and volunteer buddy/advocates. Less successful strategies for abused persons are referrals to general community activities and programs. For caregiver abusers, the most successful and accepted interventions involve individual supportive counselling to reduce anxiety, stress and depression and education and training. Abuser-oriented strategies are most accepted and successful in the study. Thus, it would seem pertinent for intervenors to focus services and strategies on abusers and not only on abused older adults, in particular offering them supportive individual counselling to reduce anxiety, stress, and depression. For abused care receivers, home-based services can offer the necessary support to move out of their abuse situation with the help of volunteers and support group activities.     

Social Support and the Mental Health of Family Caregivers: Sons and Daughters Caring for Aging Parents in Japan

The prevalence of depressive symptoms among family caregivers has been documented as a serious social problem that could threaten the lives of the elderly and their family caregivers. Social support is considered to be a promising remedy for this problem, although a comprehensive examination of the availability and effectiveness of social support that includes both formal and informal support across multiple dimensions remains limited. In addition, little research has been conducted in Japan on gender differences in stress processes. This study tried to fill those gaps by analyzing recent survey data on sons and daughters who are caring for their elderly parents. The results indicate that sons and daughters have similar levels of formal and informal support for daily care and advice, while there are some gender differences in regard to the availability of other types of social support. It was also found that many types of informal support were significantly associated with a lower caregiver burden for daughters, although this was not necessarily the case for formal support. General instrumental support from formal sources was even associated with higher levels of distress. For sons acting as caregivers, daily caregiving support was the only formal support that was significantly associated with their lower level of distress. Issues of formal support are discussed, in order to reduce the psychological burdens borne by sons and daughters who care for their parents at home.