Caregivers and Caregiver Support
According to the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute’s report, Caregiving in the U.S. 2020, family caregivers now encompass more than one in five Americans. The report also reveals that family caregivers are in worse health compared to five years ago. As the demand for caregiving rises with an aging population, there is an opportunity for both the public and private sectors to work together to develop solutions to support family caregivers and those under their care.
The NAC/AARP Report states that more than seven million caregivers provide care for former or current military personnel in the United States, and more than 20% of those care for someone who served in the armed forces during the past 20 years. As the Veteran population ages, the need for informal caregivers is expected to increase. Studies funded by VA's Health Services Research & Development Service (HSR&D) address many aspects of the informal caregiver’s role, such as financial stability, care in the community, and the experiences of younger Veteran family members.
The following describes investigations and findings from several research projects conducted by HSR&D investigators on issues critical to improving the experiences of Veteran caregivers.
One way in which VA facilitates independence and supports caregivers is through the Veteran-Directed Care (VDC) program, part of VA's Office of Geriatrics and Extended Care Services. VDC provides flexibility to enrollees and enables them to hire family members, friends, or neighbors as paid caregivers. In this study, investigators sought to evaluate the incidence of VA hospital admissions, ambulatory care-sensitive admissions, and costs associated with inpatient care in the year after the initial receipt of a VDC service. Results showed that VDC is "non-inferior" to other purchased-care services in terms of hospital use and cost trajectories, despite being targeted to Veterans with greater care needs.
Given VDC's popularity among Veterans and caregivers, it is a valuable model for supporting medically complex patients who are living in the community. However, to allocate resources more efficiently, future work should identify the optimal target population for VDC—and the optimal methods for using the stipend to facilitate independent community living and support caregivers.
About the Study
To assess the incidence of VA hospital admissions, ambulatory care-sensitive admissions, and costs associated with inpatient care in the year after the initial receipt of a VDC service, investigators compared outcomes among 965 Veterans who had their first VDC visit recorded in FY17 to 36,442 Veterans who received at least one VA purchased-care service other than VDC (homemaker or home health aide, home respite, and/or contract adult day healthcare). Patients were followed for 360 days after their first VDC or other purchased care visit—or until death.
Results showed that Veterans enrolled in VDC had indicators of higher chronic disease burden and more functional limitations than Veterans enrolled in other purchased-care service programs, but experienced similar decreases in hospital use and costs from before to after enrollment in services. During the 6th month before receiving services, mean monthly hospital costs were $2,131 for VDC patients, $1,054 for comparison group patients at sites with an active VDC program, and $974 for comparison group patients at sites without an active VDC program. In the 6th month after receiving services, mean monthly costs were $1,569, $1,170, and $1,049, respectively. In the 12th month after receiving services, VDC patients still had higher mean monthly hospital costs ($1,331) than patients in the active or inactive comparison group ($1,007 and $1,027, respectively), but the difference between costs among VDC patients and comparison-group patients had decreased.
Citation: Yuan Y, Thomas K, Frakt A, et al. Users of Veteran-directed care and other purchased care have similar hospital use and costs over time. Health Affairs. June 2019;38(6):1037-1045.
Approximately 5.5 million Veterans rely on CGs to help them with their daily care. Research has shown that unpaid, informal caregivers (CGs), such as family and friends, who are also employed, may be at significant risk of experiencing a high burden of stress. A recent national survey found that approximately 60% of employed CGs had significant problems balancing work and caregiving. Stress not only increases the CG’s risk of illness and diminishes their quality of life; it also impacts the CG’s ability to provide care for the care recipient (CR) and the overall quality of the relationship. For CGs of Veterans coping with behavioral health issues related to conditions such as depression, post-traumatic stress disorder (PTSD), anxiety, and traumatic brain injury (TBI), stress burden may be particularly high. Programs that specifically address caregiving-work role stress may be especially effective in improving CGs’ wellbeing and work/financial stability, as well as the quality of Veterans’ care.
Investigators expect that data from this study will fill knowledge gaps about work functioning and productivity among employed CGs caring for Veterans with behavioral health conditions, and will shed light on whether a program that specifically addresses caregiving- work balance is effective in improving CGs’ wellbeing and work functioning – and the quality of Veterans’ care.
About the Study
The primary aim of this randomized study is to examine the impact of a novel intervention—Caregiver Self-Management of Stress (Caregiver SOS—on CG distress, work performance, and productivity. Caregiver SOS is delivered by phone and offers evidence-based work and CG role performance-focused, self-management counseling to employed CGs.
Investigators will conduct a randomized controlled trial and compare pre- and post-intervention changes among 300 caregivers assigned to either usual care or to the intervention, Caregiver SOS. Caregiver SOS includes six, one-hour telephone sessions with a care manager. Usual care will consist of one telephone session with a care manager. Participants will be recruited from two participating VA medical centers and their affiliated outpatient clinics. Recruitment criteria includes caregivers who care for Veterans diagnosed with depression, anxiety, PTSD, and/or TBI – and who screen positive for clinically significant distress and CG/work role difficulty.
Study aims include:
- Determining the extent to which, relative to usual care, a novel intervention providing evidence-based, telephonic CG/work stress self-management counseling is related to changes in CG psychological distress and ability to function effectively in work and CG roles; and
- Evaluating whether participation in the intervention is related to caregivers’ overall wellbeing and CRs’ health care utilization.
Investigators will work with local and national partners (e.g., Caregiver Support Program; Office of Mental Health and Suicide Prevention) to evaluate findings and devise a strategy for ultimately testing effectiveness and implementation of the intervention both locally and across multiple sites.
Shahrzad Mavandadi, PhD, is an investigator with the Center for Health Equity Research and Promotion, in Philadelphia, PA and the VISN 4 Mental Illness Research, Education, and Clinical Center.
When Veterans with functional impairments choose to remain at home, informal caregivers play a critical support role, providing the majority of home and community-based long-term care. The onset and continuation of the COVID-19 pandemic has resulted in considerable stress on an already strained and burdened caregiving system—yet there are no known studies of how the pandemic has impacted Veterans’ caregivers.
This pilot study is a first step toward developing a long-term understanding of how Veteran caregivers and their capacity for caregiving have been and will be impacted by the pandemic. It is an entry point for developing more tailored and sensitive (e.g., to inequities) VA Veteran caregiver system supports. The study design includes feedback loops to VA stakeholders and partners so that findings may inform ongoing research, caregiver-centered service, and policy reforms. This investigation provides a unique opportunity to learn about informal caregivers—an essential ally in the care of Veterans—and the ways in which VA can enhance their support for Veterans experiencing functional and clinical impairment.
About the Study
In this 15-month, multi-sited, mixed-methods pilot study, investigators will survey and interview Veteran caregivers at five VA sites (San Antonio, Palo Alto, Miami, Salt Lake City, Durham.) Using a brief Veteran caregiver survey, semi-structured interviews with caregivers and VA stakeholders, and virtual focus groups with caregivers, investigators will:
- Describe both positive and negative caregiver experiences during the COVID-19 pandemic – and identify threats to long-term caregiver resiliency.
- Provide preliminary data to and debrief with the Veterans Integrated Service Network and national level VA stakeholders to understand how these issues are perceived and responded to at a regional and national level, and their priorities for caregiver services and research.
- Engage Veteran caregivers to identify top priorities for future research and intervention.
Preliminary findings will be shared with VA program office leaders and will be used to explore how programs—such as VA’s Caregiver Support Program—are working to address caregiver needs. Investigators will also engage caregivers to set priorities for future Veteran caregiver research and intervention.
Lauren S. Penney PhD, MA, is an affiliate investigator with the South Texas Veterans Health Care System and an investigator with the HSR&D Dole Center of Excellence.
The rapidly changing demographics of the Veteran population mean that increasingly, younger family members are cohabiting with Veterans—and in many cases, are providing care for—or are affected by caregiving for—a Veteran. A recent survey of 500 military and Veteran caregivers conducted through a partnership of the Elizabeth Dole Foundation, the University of Texas School of Public Health Houston, and the Wounded Warrior Project, showed that youth and children were present in almost all respondents households. The most frequent age groups were 12-14 and 15-18. The majority of these youth were involved in caregiving activities, ranging from household tasks to providing emotional support.
Whether they see themselves as a caregiver or not, younger members of Veteran-inclusive households may have unique insights into the needs of families with a wounded, ill, or injured Veteran family member. The Living in a Veteran HomE (LIVE) study seeks to identify key “moments that matter” in shaping the lived experiences of youth in Veteran caregiving households by recruiting parents and/or guardians and youth who are part of Veteran caregiving households in order to better understand the experiences of youth who comprise Veterans’ home care support system. Investigators expect that data from the project will inform an action plan for VA and other organizations and agencies to increase support for Veterans and their caregivers.
About the Study
The Elizabeth Dole Center of Excellence for Veteran and Caregiver Research is conducting a set of studies to expand VA capacity to deliver integrated, Veteran- and caregiver-partnered, data-driven approaches to care. One of the Center’s objectives is to learn about the lived experiences of youth in Veteran caregiving households and identify strategies to assess and support these youth. Investigators in this study will conduct surveys, focus groups, and digital journaling in order to build on five broad categories of impact of caregiving on children and youth. Parents and youth will work with the study team virtually through online platforms such as email, video calls, and online surveys. Investigators expect to enroll up to 60 young people living in Texas, who are between the ages 12-18 and are part of a Veteran caregiving household.
Luci Leykum, MD, MBA, MSc, is a principal investigator with the HSR&D Dole Center of Excellence and an affiliate investigator with the South Texas Veterans Health Care System.