Providing quality care to America's Veterans doesn't end with the Veteran himself or herself. It extends to the family member or loved one who tends to the everyday needs of a disabled, chronically ill, or aging Veteran: the caregiver.
Increasingly, America is becoming a nation of caregivers. According to a 2015 report from AARP, an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months. The majority of caregivers are female, but 40 percent are male.
Whether supervising a spouse to help keep him or her from wandering, assisting with activities of daily living, helping to develop and implement treatment plans, or managing a loved one's behavioral symptoms, the demands of caregiving leave many caregivers anxious, depressed, or susceptible to chronic illness themselves.
In 2010, legislation authorized VA to establish a wide range of new services to support certain caregivers of eligible Veterans who served after Sept. 11, 2001. These caregivers are now entitled to access to a toll-free caregiver support line (1-855-260-3274), expanded education and training on caring for Veterans at home, and other support services such as counseling and support groups.
VA facilities also offer programs including in-home care; specialized education and training; respite care; equipment, home, and automobile modification; and financial assistance for eligible Veterans. Every VA medical center has a caregiver support coordinator to help link up caregivers and Veterans with available VA and non-VA support resources.
Caring for an injured, disabled, or ill family member can entail emotional, physical, and financial strain. To advance research in this field, VA experts are developing and refining questionnaires and survey tools, as well as cross-cutting strategies that can be used to implement and test programs across a wide variety of caregiving situations.
Several VA studies are looking at the impact of caregiver education and stress-reduction programs on the health and wellness of both the Veteran and the caregiver. Other studies are focusing on both the short- and long-term needs of caregivers, as many of these individuals will be providing care for years or even decades.
VA investigators are continuing to improve their understanding of the care caregivers provide and the support they need. They also are improving their understanding of how caregiving has affected the caregiver, the Veteran receiving care, and the Veteran's entire family.
FACES study—In 2009 and 2010, VA researchers in Minneapolis conducted the FACES study. They contacted 564 families of polytrauma patients (patients with multiple injuries, including brain injuries) who had been treated at the Minneapolis, Palo Alto, and Tampa VA polytrauma centers.
The researchers found that 79 percent of caregivers were women, usually the Veteran's parent or spouse. They also learned that even as long as four years after their injury, 22 percent of Veterans with polytraumas supported by caregivers still needed help with basic activities and daily living such as bathing, feeding, and toileting. An additional 48 percent needed help with tasks such as shopping, driving, and money management.
Nearly one-quarter of the caregivers responding to the survey reported they were providing care for more than 40 hours per week, the equivalent of a full-time job. Another 20 percent said they provided 5 to 40 hours of care. Nearly half of the caregivers for Veterans who needed help with basic activities provided care for more than 80 hours a week.
Financial strain—A 2012 study, conducted before the implementation of the Caregivers and Veterans Omnibus Health Services Act, which provides stipends and other services for some primary Family Caregivers of eligible post 9/11 Veterans and Service members, noted that financial strain is common for caregivers.
Among caregivers of Veterans with polytrauma, 62 percent reported their assets had been depleted and 41 percent reported having to leave the labor force. These figures are much higher than those for other caregivers internationally.
Caregiver mental health—A 2015 study by researchers at the Hunter Holmes McGuire VA Medical Center in Richmond, Va., and at the Minneapolis VA Health Care System looked at several measures of the mental health of informal caregivers for Veterans who had received inpatient rehabilitation care at a VA Polytrauma Rehabilitation Centers between 2001 and 2009.
They found that caregivers who had not been trained on how to navigate health care systems now have higher levels of depression, felt more burdened by their responsibilities, and had lower self-esteem than those who had been trained in this skill. They also found that caregivers who had not been trained in how to support the emotions of their care recipients now have higher levels of anxiety, depression, and care burden, and lower self-esteem than those who received such training.
Consequences of caregiver grief—Another 2015 study, this one by researchers at the Edward Hines, Jr. VA Hospital in Hines, Illinois, and the Loyola University Chicago Marcella Niehoff School of Nursing, found that the blame and anger associated with the grief of caring for a loved one with a TBI may be related to inflammation and certain chronic diseases, including heart disease, cancer, and diabetes. The study examined grief and its association with inflammation in 40 wives or partners of Veterans with TBIs.
Study participants completed written measures of grief, perceived stress, and symptoms of depression. They also provided morning saliva samples to measure TNF-alpha, a substance associated with inflammation and chronic disease.
The caregivers collectively reported levels of grief comparable to that of individuals who have lost a loved one. That grief was not associated with TNF-alpha or inflammation in general. However, higher levels of TNF-alpha were found in those caregivers who reported high levels of blame and anger associated with their grief.
High levels of TNF-alpha are related to a variety of inflammatory-related health issues, and may be an important indicator of which caregivers may be at risk for developing chronic health problems such as heart disease.
Home safety toolkit—In order to live at home, patients with memory and judgment problems such as those caused by Alzheimer's disease must be closely supervised. The level of vigilance required of caregivers, however, can be lessened if they take some simple measures to make their homes safer.
Researchers at the Edith Nourse Rogers Memorial Veterans Hospital in Bedford, Massachusetts, and Boston University have created a safety toolkit that provides research-based recommendations for home safety. Their 25-page, illustrated, simple-language guide was tested on 108 pairs of patients and caregivers.
A 2013 study found that in families using the toolkit, there was less caregiver strain, better home safety, and fewer accidents and risky behaviors among those with Alzheimer's than in those receiving usual care.
The team is now funded to work with VA primary care clinics and other partners to spread the word, and to get the tools into the hands of caregivers who need them.
REACH VA—The REACH VA program provides much-needed support for caregivers of Veterans with Alzheimer's disease. It is based on the knowledge that about 80 percent of caregivers for those with dementia often lack the skills to manage troubling patient behavior—and their own stress.
As part of the program, VA researchers worked with the National Institutes of Health and several universities to develop and test a six-month training program to educate and support caregivers of Veterans with Alzheimer's disease, and to help them develop better caregiving skills.
The material is tailored to family members based on assessments of where they need the most help. REACH VA is now being used at VA medical centers throughout the nation. It is also being modified to help caregivers of Veterans with spinal cord injuries and traumatic brain injuries.
The widely used Savvy Caregiver Program is designed to train family and professional caregivers in the basic knowledge, skills, and attitudes needed to handle the challenges of caring for a family member with Alzheimer's disease, and to be an effective caregiver.
The program focuses on helping caregivers think about their situation objectively, and to provide them with the knowledge, skills, and attitudes they will need to manage their situation.
In 2016, researchers at the Atlanta VA Medical Center and Emory University tested Tele-Savvy, an Internet-based version of the program. They used teleconferences and video modules to provide access for 30 caregivers for Veterans to the program in their homes.
Their study found that Tele-Savvy was faithful to the original objectives of the Savvy Caregiver program, and in certain cases, was an improvement on the original. Survey instruments determined that caregivers' burden, anxiety, and symptoms of depression were all decreased after completion of the program, as were the behavioral and psychological symptoms of the Veterans they cared for.
The research team believes that an effective online caregiver education program such as Tele-Savvy could provide greatly expanded access for caregivers who cannot attend training in person because of distance, transportation limitations, and caregiving responsibilities.
In 2010, the Durham VA Medical Center began a pilot program to help caregivers understand and accept dementia in their loved ones, and to help them manage the behaviors associated with the disease. The program, Caring for Older Adults and Caregivers at Home (COACH), is open to Veterans aged 65 or older in the North Carolina area with a caregiver at home.
In 2015, researchers at Durham and with the Duke University School of Medicine evaluated the program, and found that it aligned with 9 of 10 clinical process measures VA uses to gauge the quality of care for dementia management, and that it enabled Veterans with dementia to leave institutional care for placement outside the home more quickly, and to remain in their homes for longer periods of time.
The burden of care that caregivers experience needs to be measured and monitored, according to a 2015 study by researchers at the Michael E. DeBakey VA Medical Center and the University of Houston. Clinicians need to identify caregivers who suffer from depression and other physical complaints because of the burden placed on them, because both the caregivers and the Veterans they care for are likely to experience negative health consequences.
The research team studied 243 caregivers for Veterans by administering an interview, called the Zarit Burden Interview (ZBI). They found that the ZBI is sensitive enough to be able to detect how caregivers' burden is affecting them in the areas of attention, memory, language, and executive functioning, and should be used by clinicians to help identify problems in these areas at an early stage so they can intervene to keep them from getting worse.
The team suggested that more research is needed, however, to fully understand the complex relationship among caregiver burden, the severity of the illness of those they care for, and the type of diagnosis the patient has.
In 2015, researchers at the Ann Arbor VA Healthcare System and the University of Michigan published results of a trial involving 369 Veterans with heart failure. The goal of the study was to determine if systematized feedback to caregivers could alleviate their burden and help them avoid burnout and mental health concerns.
The patients were placed in two groups. In one group, Veterans received self-care monitoring and education through weekly automated calls providing them with feedback about urgent health problems that had been reported to their clinical team. In the other, the patients received the same information—but their family caregiver received emailed feedback about the patients' health status, along with suggestions for how to help the patient.
At 6 and again at 12 months into the trial, family caregivers in both groups were asked to complete assessments of the strain of caregiving, depressive symptoms they might have experienced, and their participation in helping to support the patient. In the group where caregivers received feedback about their loved one, the caregivers reported less caregiver strain and depression than in the control group.
Caregivers receiving feedback also reported they had spent more time with their patients, including greater attendance at doctors' appointments; increased involvement in patient medication adherence; and more time spent in supportive care.
VA has established a Caregiver Support Line (1-855-260-3274). Callers can learn about the assistance VA has available for them. They are also helped to access VA services, and can be connected with caregiver support coordinators at nearby VA medical centers. Those who answer the phone are also trained to just listen supportively, if that's what a caregiver needs.
Translation of a dementia caregiver support program in a health care system—REACH VA. Nichols LO, Martindale-Adams J, Burns R, Graney MJ, Zuber J. This article describes the National Institute on Aging's REACH trial, and its translation in VA into REACH VA. Arch Intern Med, 2011 Feb 28;171(4):353-9
The invisible side of war: families caring for US service members with traumatic brain injuries and polytrauma. Griffin JM, Friedemann-Sanchez G, Jensen AC, Taylor BC, Gravely A, Clothier B, Simon AB, Bangerter A, Pickett T, Thors C, Ceperich S, Poole J, Van Ryn M. Results of the FACES study, indicating that many caregivers of Veterans may need additional resources. J Head Trauma Rehabil, 2012 Jan-Feb;27(1):3-13.
Clinical trial of a home safety toolkit for Alzheimer's disease. Horvath KJ, Trudeau SA, Rudolph JL, Trudeau PA, Duffy ME, Berlowitz D. Results of the test of a new educational intervention to improve the competence of informal caregivers for persons with dementia living in the community. Int J Alzheimers Dis. 2013;913606.
Dependency aspect of caregiver burden is uniquely related to cognitive impairment in Veterans. Stinson JM, Collins RL, Maestas KL, Pacheco V, LeMaire A, Benge J. Test performance in the memory, attention, processing speed, executive functioning, and emotional functioning domains by Veterans with dementia was directly related to the burden their caregivers felt. J Rehabil Res Dev, 2014;51(8):1177-88.
The VA caregiver support line: a gateway of support for caregivers of Veterans. Wright P, Malcolm C, Hicken B, Rupper R. Describes the VA caregiver support telephone hot line and its role in supporting aging Veterans and their caregivers. J Gerontol Soc Work. 2015;58(4):386-98.
A mobile health intervention supporting heart failure patients and their informal caregivers: a randomized comparative effectiveness trial. Piette JD, Striplin D, Marinec N, Chen J, Trivedi RB, Aron DC, Fisher L, Aikens JE. Compared to a relatively intensive model of interactive voice response monitoring, self-management assistance, and clinician alerts, a model including automated feedback to an informal caregiver outside the household improved heart failure patients' medication adherence and caregiver communication. J Med Internet Res. 2015 Jun 10;17(6):e142.
Preliminary data from the Caring for Older Adults and Caregivers at Home (COACH) program: a care coordination program for home-based dementia care and caregiver support in a Veterans Affairs Medical Center. D'Souza MF, Davagnino J, Hastings SN, Sloane R, Kamholz B, Twersky J. The study demonstrates the successful implementation of a home-based care coordination intervention for persons with dementia and their family caregivers that is strongly aligned with quality measures. J Am Geriatr Soc. 2015 Jun;63(6):1203-8.
A randomized trial of mobile health support for heart failure patients and their informal caregivers: impacts on caregiver-reported outcomes. Piette JD, Striplin D, Marinec N, Chen J, Aikens JE. When care partners experienced significant caregiving strain and depression, systematic feedback about their patient-partner decreased those symptoms. Med Care. 2015 Aug;53(8):692-9.
Depressed affect and dimensions of religiosity in family caregivers of individuals with dementia. Winter L, Moriarty HJ, Atte F, Gitlin LV. The findings of this study underscore the complex and sometimes bidirectional association between depressed mood and religiosity and argue for recognition of distinct dimensions of religiosity. J Relig Health. 2015 Aug;54(4):1490-502.
The relationship between training and mental health among caregivers of individuals with polytrauma,. Stevens LF, Pickett TC, Wilder Schaaf KP, Taylor BC, Gravely A, Van Houtven CH, Friedemann-Sanchez G, Griffin JM. Caregivers of Veterans with polytrauma who did not receive training on how to navigate health care systems, or on how to support their care recipients' emotions, had higher levels of depression, felt more burdened, and had lower self esteem than those who did. Behav Neurol. 2015;2015:185941. (Epub 2015 Dec 1)
The man I once knew: grief and inflammation in female partners of Veterans with traumatic brain injury. Saban KL, Mathews HL Collins EG, Hogan NS, Tell D, Bryant FB, Pape TL, Griffin JM, Janusek LW. Blame and anger associated with grief in partners of Veterans with TBIs may be related to elevations in a proinflammatory cytokine, tumor necrosis factor α. Biol Res Nurs. 2016 Jan;18(1):50-9.
Development and implementation of Tele-Savvy for dementia caregivers; A Department of Veterans Affairs clinical demonstration project. Griffiths PC, Whitney MK, Kovaleva M, Hepburn K. An effective online caregiver psychoeducation program can provide greatly expanded access for caregivers who cannot attend in person for reasons of distance, transportation limitations, and caregiving responsibilities. Gerontologist. 2016 Feb;56(1):145-54.
Chronic stress may put TBI caregivers at risk of illness, Reuters News Service, Feb. 18, 2015
Technology allows patients, caregivers to manage with less stress, Medicalxpress, Aug. 4, 2015
Research: face-to-face socializing more powerful than phone calls, emails in guarding against depression in older adults, Oregon Health & Science University press release, Oct. 5, 2015
Oklahoma caregivers speak frankly about Alzheimer's disease and its toll, The Oklahoman, Feb. 9, 2016
VA Caregiver Support, Department of Veterans Affairs
Resources and Education for Stroke Caregivers' Understanding and Empowerment, Department of Veterans Affairs
The Veterans Crisis Line, Department of Veterans Affairs
My HealtheVet: Caregiver Assistance, Department of Veterans Affairs
Fisher House Program, Department of Veterans Affairs
I am a Caregiver/Family Member (benefits for caregivers and family members), Department of Veterans Affairs
HIV/AIDS caregivers, Department of Veterans Affairs
Online Education and Support for Dementia Caregivers, Office of Rural Health, Department of Veterans Affairs
Polytrauma Family & Caregiver Support, Department of Veterans Affairs
CHAMPVA Caregiver Program Handbook, Department of Veterans Affairs
Caregiver resources, Alzheimers.gov
Caregiver stress, Womenshealth.gov