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Non-professional or informal caregivers—frequently family members—are an important source of physical, emotional, and other support for ill or injured Veterans. Estimates indicate that there are approximately 5.5 million caregivers1 nationwide who are caring for former or current military personnel. Almost 96 percent of these caregivers are women, with 70% providing care to a spouse or partner. Thirty percent of Veterans' caregivers provide support for approximately 10 years or more, compared to 15% of caregivers nationally. Almost 88% of caregivers report increased stress or anxiety, with 77% noting that sleep deprivation is a major concern.2
The complex nature of many Veterans' health conditions is another compounding factor for informal caregivers: Veterans suffer more frequently from traumatic brain injury, post-traumatic stress disorder (PTSD), spinal cord injury, and diabetes than their non-Veteran counterparts.3
With an increasing number of Veterans requiring some form of caregiving or assistance, there is a growing need for evidence-based research that supports informal caregivers. Studies funded by VA's Health Services Research & Development Service (HSR&D) address many aspects of the informal caregiver's role, such as emotional support, access to services, and in-home safety. The following studies represent just a few of the ongoing and recently concluded investigations being conducted by HSR&D researchers in the area of caregiver support.
The VA Medical Foster Home (MFH) program merges care in a personal home with an interdisciplinary home care team—such as VA Home Based Primary Care (HBPC). The MFH program is for Veterans who cannot live independently because of complex chronic medical, psychological, and functional impairments, and lack of adequate family support. Often, Veterans in MFH remain there until end of life.
In this recently published paper based on a three-year study of the MFH program, investigators used secondary analysis of interviews with 20 MFH caregivers from seven programs across the country. The research aims were to describe and explain: the type of care backgrounds and skills these caregivers possess; caregivers' primary motivations to open their homes to Veterans who often have complex medical and social needs; and how caregivers function in their role as primary caregiver for Veterans.
Findings indicated that caregivers interviewed had worked in long-term care settings and/or cared for family members. A strong desire to serve Veterans was a primary motivation for caregivers rather than financial gain. The caregivers' long-term care skills aided them in building and sustaining the unique Medical Foster Home family-like community.
Implications: Results describe the integral role played by caregivers in building and sustaining the unique Veteran-centric MFH community, which creates a family-like environment for Veterans with long-term care needs. Investigators suggest that this research may prove useful to MFH coordinators with regard to quality improvement, and should provide social workers within and outside the VA with an alternate and effective placement option for Veterans with high-level care needs. Investigators also suggest that findings may help strengthen continued partnerships with MFH caregivers and HBPC teams, along with Veterans' families and coordinators.
Haverhals LM, Manheim CE, Gilman CV, Jones J, Levy C. Caregivers Create a Veteran-Centric Community in VHA Medical Foster Homes. Journal of Gerontological Social Work. 2016 Sep 6.
Principal Investigator: Cari Levy, MD, PhD is Associate Director of the HSR&D
Center of Innovation for Veteran-Centered and Value Driven Care, co-located in Denver, CO, and Seattle, WA.
The Quality Enhancement Research Initiative's (QUERI) Caregiver Support Evaluation Initiative (VA-CARES) is evaluating the impact of two programs created by the Caregivers and Veterans Omnibus Health Services Act of 2010 (Public Law:111-163), which enacted legislation to ensure training, services, and assistance for Veteran caregivers. While these programs—the Comprehensive Assistance for Family Caregivers (CAFC) and Caregiver Support Services Program (CSP)—have surpassed expectations of success, VA-CARES seeks to offer evidence-based evaluation of their short-term impact.
Using mixed methods and data, VA-CARES investigators are describing how these programs have affected Veterans' use of healthcare by:
Implications: Results from this comprehensive evaluation will help inform the VA CAFC and CSP about its return on investment, and will provide information on best practices for improving and better targeting its programs for Veterans and their caregivers. VA-CARES' operational partner is the Office of Care Management and Social Work Services, whose mission is to help those who partner with VA to care for Veterans via specific programs – and to provide a support line that offers a wide range of resources for Veterans' informal caregivers.
Principal Investigator: Courtney Van Houtven, PhD, is a Research Scientist with the HSR&D Center for Health Services Research in Primary Care at the Durham VA Medical Center.
For informal caregivers of Veterans who have had a stroke, depression is common. Further, caregiver depression has been shown to be a major contributor to the stroke survivor's readmission to the hospital or to a long-term care facility. Research has indicated that helping caregivers resolve problems is effective in reducing depressive symptoms; however, many problem-solving interventions are not widely used because they involve multiple in-person or telephone-based sessions.
This is a multi-site (Gainesville, Tampa, Miami), ongoing, four-year study. Investigators are using a randomized controlled trial to test a problem-solving intervention for stroke caregivers that involves web-based education on the RESCUE stroke caregiver website, as well as skills training. The intervention is delivered during one post-discharge telephone session, followed by in-home sessions delivered online via a messaging center. Investigators hypothesize that stroke caregivers who receive the intervention will have fewer symptoms of depression compared to stroke caregivers in usual care. The study will also look at the effect of the intervention on stroke caregivers' knowledge, sense of burden around their caregiving role, perceptions about positive aspects of caregiving, self-efficacy, and health-related quality of life. Investigators also plan to look at:
Implications: This research has the potential to improve the quality of and access to post-stroke, transition-to-home care for Veterans and their caregivers. Investigators expect to update the currently available VA RESCUE stroke caregiver website and produce an evidence-based model (post-discharge support and training delivered over the phone and online) that can be applied to other conditions.
Principal Investigator: Constance R. Uphold, PhD, ARNP, FAAN is Associate Director of Implementation and Outcomes Research with the VA Geriatric Research Education and Clinical Center (GRECC), and is part of HSR&D's Center of Innovation on Disability and Rehabilitation Research (CINDRR) in North Florida, South Georgia, and Tampa.
Those diagnosed with Alzheimer's type dementia may live, on average, four to eight years after onset of symptoms, with some living as long as 20 years post-onset. The overwhelming majority of care for those with this type of dementia is provided by informal caregivers—typically family and friends. A Home Safety Toolkit (HST) has been shown to both decrease caregiver strain and improve safety for Veterans with dementia.
In this currently ongoing study, investigators are examining the processes necessary to make HST's accessible to caregivers of Veterans with dementia, and gathering additional information about the effectiveness of the HST when implemented in VA primary care clinics.
The study is comprised of two phases. In Phase 1, investigators will conduct a formative evaluation using semi-structured interviews with key clinical staff (MD, NP, RN and OTR, Prosthetics and Sensory Aids managers) who have had an experience assessing, prescribing, and/or providing home safety items for a Veteran with dementia in the previous six-month period. Patients' and caregivers' perceptions of the facilitators of and barriers to successful acquisition and use of home safety items will also be explored. In Phase 2, investigators will evaluate the implementation strategies considered successful to providing Veterans with dementia and their primary caregivers with the HST.
Recruitment and data collection for Phase 1 have been completed, and qualitative data analysis is being finalized. Implementation strategies and small tests of change are also in process.
Implications: Based on currently available results, the evidence-based HST for dementia has been shown to have a significant impact on reducing family caregiver strain, increasing family caregiver's self-efficacy in making home safety modifications, and on reducing risky behaviors and accidents for Veterans with Alzheimer's type dementia.
Principal Investigator: Lauren R. Moo, MD is an Affiliate Investigator with the HSR&D
Center for Healthcare Organization and Implementation Research, in Bedford, MA.
1 Ramchand, R., Tanielian, T., Fisher, M., Vaughan, C., Trail, T., Batka, C., Voorhies, P., Robbins, M., Robinson, E., & Ghosh-Dastidar, B. (2014). Key Facts and Statistics from the RAND Military Caregivers Study.
2 National Alliance for Caregiving and United Health Foundation. (2010). Caregivers of Veterans: Serving on the Home Front.
3 ibid
