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.
VA researchers are developing resources caregivers need to improve Veterans' health, and also providing help caregivers themselves need to take care of their own health and well-being.
In 2010, President Obama signed legislation authorizing 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; expanded education and training on caring for Veterans at home; and other support services such as counseling and support groups.
VA's Family and Caregiver Experience (FACES) study, conducted in 2009 and 2010, has shed light on the enormous burdens faced by many caregivers of Veterans with severe injuries. The data developed by researchers during the study is now being used to support caregivers as they provide care for their loved ones.
Other VA research programs are providing support to caregivers of elderly Veterans, especially those with Alzheimer's disease. In the future, VA researchers hope to improve their understanding of the care caregivers provide and the support they need. They also hope to better understand how caregiving has affected the caregiver, the Veteran receiving care, and the Veteran's entire family.
Increasingly, America is becoming a nation of caregivers. Every day, about 62 million Americans provide long-term, in-home care to a loved one or friend who is disabled, coping with chronic illness, or aging.
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 2009 and 2010, VA researchers in Minneapolis conducted the Family and Caregiver Experience (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 the Veterans 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.
A subsequent study using data from these interviews found that financial strain is common for 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.
VA's Resources for Enhancing Alzheimer's Caregiver Health (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 behaviors—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 rolled out 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.
Some VA researchers have prepared a home-safety toolkit to help make homes safer for persons with Alzheimer's disease. Others have created an online education and support program for caregivers of patients with Alzheimer's.
A recent study found that most caregivers of Veterans with Alzheimer's disease were quite satisfied with the quality of VA care. However, these same caregivers reported that many of their needs to provide care for Veterans were unmet. VA is now working to better meet those needs.
Today, VA researchers are studying how caregiver support can be enhanced for Veterans with heart failure and those undergoing chemotherapy with cancer. All patients in the study will receive weekly phone calls to monitor their status; some of their care partners will receive information about symptoms, and given structured opportunities to provide additional support.
Although it is not a VA research project, caregivers should know that the Department 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.
Future research is planned on learning what families go through immediately after their loved ones are injured or incapacitated. This will help identify the factors that appear to help some families rebound from stressful life changes and the new challenges in caregiving these changes bring.
VA researchers will also focus on providing a more comprehensive understanding of long-term caregiver needs, both for Iraq and Afghanistan Veterans and frail elderly Veterans. Finally, we will continue to test innovative ways to support caregivers, and to study the costs and benefits of caregiver services.
Advancing Veteran-Centric Care for Veterans, Families, and Caregivers. A slide presentation by Mark E. Kunik, MD, MPH
Alzheimer's-caregiver study being implemented at 20 VA sites, VA Research Highlights
The family factor: can supportive spouses help Veterans improve their cholesterol? VA Research Currents
Couple Therapy Helps With PTSD, VA Research Currents
Boosting education for stroke survivors and their caregivers, VA Research News Feature
Caring for the caregiver, VA Research News Feature
Caregiving and Dementia, VA research videos
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 Resources for Enhancing Alzheimer's Caregiver Health (REACH) trial, and its translation at 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.
Is policy well-targeted to remedy financial strain among caregivers of severely injured U.S. service members? Van Houtven C, Friedemann-Sanchez G, Clothier B, et al. Findings that financial strain is common for caregivers of Veterans. Inquiry Winter 2012/13 49(4):339-51.
Vitamin E, Memantine, and Alzheimer Disease. Dysken MW, et al. Vitamin E can slow functional decline and decrease caregiver burden in patients with mild to moderate Alzheimer's disease. JAMA 2014 Jan 1;311(1):33-44
A feasibility study of caregiver-provided massage as supportive care for Veterans with cancer . Kozak L, Vig E, Simons C, Eugenio E, Collinge W, Chapko M. It is feasible to use a multimedia program train caregivers of Veterans with cancer to offer massage for supportive care at home. J Support Oncol, 2013 Sep;11(3);133-43
Smoking and smoking increase in caregivers of Alzheimer's Patients . Salgado-Garcia Fl,, Zuber JK, Graney MJ, Nichols LO, Martindale-Adams JL, Andrasik F. Of 642 caregivers for Alzheimer's patients, nearly 40 percent reported smoking and 25 percent of smokers reported recent increase of smoking. Therefore, smoking among caregivers is a valid public health concern.Gerontologist, 2013 Dec 26. (epub ahead of print.)
The economic, public health, and caregiver burden of late-life depression . Zivin K, Wharton T, Rostant O. The article reviews the burden of late-life depression from several perspectives, including how it influences others, such as family members and caregivers. Psychiatr Clin North Am, 2013 Dec;36(4);631-49.
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.
PTSD may bring role-reversal effect for family caregivers, DoD Live, December 30, 2013
Vitamin E may slow functional decline for some Alzheimer's patients , CBS news, Dec. 31, 2013
Telepsychatry delivers help to far-flung patients, Chicago Tribune, Oct. 23, 2013
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, Department of Veterans Affairs
Polytrauma Family & Caregiver Support, Department of Veterans Affairs
National Resources Directory, Department of Defense, Department of Labor, Department of Veterans Affairs
CHAMPVA Caregiver Program Handbook, Department of Veterans Affairs