July 29, 2019 – by Dr. Kiersten Downs, Research Director, ScoutInsight
It is important to proceed through the caregiving journey with caution, armed with knowledge about how caregiving can affect our relationships, our wellbeing, and our health. Otherwise we put ourselves at risk for increased mental and physical illness, and put the ones we love at risk of losing our support and any independence gained. The statement “put on your own oxygen mask first” took on a new meaning after I accompanied my husband on a grueling journey over the past three years as he dealt with extensive health complications related to his spinal cord injury. At ScoutComms, we are not only subject matter experts because of our educational backgrounds and professional experiences; we are subject matter experts because of our lived experience. This month’s ScoutInsight spotlight looks into military and veteran caregiving, a topic close to my heart personally, and of our firm as we have had the privilege to work Senator Elizabeth Dole and the Elizabeth Dole Foundationsince supporting the launch of her important work in 2012.
Caregiving is a complex, humbling, emotional journey experienced by 39.8 million Americans who care for an adult. It is estimated that there are 5.5 million military and veteran caregivers in the United States. Of these, 1.1 million are caring for someone who served in the military after 9/11. The term military and veteran caregiveris used to include both those caring for a current member of the military (including active-duty, reserve, and National Guard members) and those caring for a veteran. Caregivers are often willing to do whatever it takes to make sure that the ones they love receive the best care possible. However, caregiving can and often will come at a high cost to those providing care, a phenomenon that has sparked a surge in recent research on caregiver health and wellbeing.
The average caregiver for a veteran of any generation is a 30-40 year old woman with dependent-age children, who is usually the spouse or partner of the veteran. The wars in Afghanistan and Iraq have created both a younger generation of injured and ill veterans and a younger generation of caregivers. Although women caring for post-9/11 veterans make up the most prominent demographic for military and veteran caregivers and are the primary focus of current public media narratives surrounding caregiving, it is important to recognize that they are not the only caregiver demographic in need of continuous support.
Military caregivers may identify across the gender spectrum, be partners or spouses, children or other family members such as a step parent, aunt or uncle, or a family friend. They may be caring for someone of any age who is living with an invisible injury such as Post Traumatic Stress (PTS), Traumatic Brain Injury (TBI) or other brain injury that may or may not be service connected. The service member or veteran may have a visible injury such as a single or multiple amputation, have a spinal cord injury resulting in loss of use of their extremities, leaving them as a para- or quadraplegic and everyday wheelchair users. Or, they could be living with cancer or another illness connected to Gulf War Syndrome, exposures like burn pits used in the Middle East or Agent Orange from Vietnam. Men providing care are often isolated and left out of important caregiving support networks, similar to how they are omitted from military spouse networks. The point is that every caregiving situation is unique. As with so many facets throughout the military and veteran service space, we need to focus on expanding our conversations and program marketing around military and veteran caregiving to be more inclusive across gender, race, ethnicities, ages and abilities to reach the broadest population possible.
The caregiver journey, as described in the Elizabeth Dole Foundation’s Caregiver Journey Map, is an ongoing effort to document the military caregiver journey and its impact on caregivers’ physical, psychological, financial, and social well-being. After spending some time with the map, I was genuinely surprised at its accuracy and how relatable it is to my own experiences. The Elizabeth Dole Foundation and the Department of Veterans Affairs recently launched The Campaign for Inclusive Care, another powerful initiative with the purpose of integrating caregivers into their veterans healthcare team. The value of this campaign cannot be underestimated. Caregivers become experts in their loved one’s conditions. Yet, many caregivers feel that medical practitioners are reluctant or even dismissive of their perspectives, resulting in them feeling disconnected and unsupported in healthcare settings. The Campaign for Inclusive Care seeks to move from caregiver support to caregiver integration.
The VA also has opened the Elizabeth Dole Center of Excellence for Veteran and Caregiver Research, the first national research center dedicated to military and veteran caregiver research. The Center will involve caregivers of veterans in the design and implementation of innovative models of care; apply the best caregiver and Veteran-driven metrics for evaluation and feedback; use data science to inform matching of services to different Veteran and caregiver groups; and apply implementation science to improve the deployment of best practices in home- and community-based care.
I may be biased given my disciplinary and professional background as an applied anthropologist who previously worked for VA, but my own excitement for these developments is supported by the fact that an anthropologist is one of the talented scholars sitting at the helm of the new VA caregiver research center. Dr. Erin Finley first captured my attention when I was struggling through grad school with her book, “Fields of Combat: Understanding PTSD among Veterans of Iraq and Afghanistan.” In fact, the VA is relying on the work of anthropologists more and more as they continue to bring valuable patient-centered perspectives through mixed methods and community engaged research.
There are many innovative programs and technologies that increase the quality of life for service members and veterans living with disabilities. When a veteran’s quality of life is improved by innovative programs and accessible/adaptive technologies, the quality of life of the caregiver is also enhanced. VA housing grants for disabled veteransare an example of programs that can be life changing for service connected disabled veterans and caregivers. With increasing costs of healthcare in the United States and complex insurance regulations, people living with disabilities face extensive barriers for access to adaptive and accessible equipment and housing, especially for those who do not have a service connection or other means of income, are permanently and totally disabled, and living off of social security and disability checks.
It is important to have quality access to individualized, holistic support for the caregiver over the lifetime of the veteran. A 2014 RAND study, commissioned by the Elizabeth Dole Foundation, on caregiving across service eras found notable differences in programs that support caregivers. Additionally, it was observed that there is variation in eligibility for and utilization of available programs for caregivers. One significant example includes low uptake of stipends and social support for pre-9/11 caregivers. Better understanding of service utilization and program effectiveness is needed to help researchers, organizations, and donors prioritize funding based on the needs of the population.
It is well known that caregivers provide critical assistance and enable veterans to live more independently. It is also well documented that, while caregivers provide a valuable service to the veterans they care for while relieving significant burden from the VA, they also face unique challenges and benefit greatly from support tailored for them. Interventions developed through collaborative community based approaches that draw from the experiences and expertise of caregivers directly will result in optimal outcomes that best support the population. Interests for future research include a stronger focus on secondary trauma and PTS as a result of caregiving, research on suicidality among caregivers, and caregiving when it involves a dual military or veteran relationship.
Kiersten Downs, PhD, is the Research Director and Program Lead for ScoutInsight, the market research division of ScoutComms. Dr. Downs is an Air Force Veteran and Applied Anthropologist with over a decade of experience in research and managing projects that focus on Veteran policy, transition and reintegration, suicide prevention, military sexual trauma, and employment needs.
Resource List for Military and Veteran Caregivers
Military caregivers don’t often ask for help, but they deserve our support. If you’re caring for an injured service member or veteran, or want to help those that do, join us today.
CAN serves a broad spectrum of family caregivers ranging from the parents of children with significant health needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Caregivers play an important role in the health and well-being of Veterans. The Caregiver Support Program offers training, educational resources, and multiple tools to help you succeed.
VA provides grants to Servicemembers and Veterans with certain permanent and total service-connected disabilities to help purchase or construct an adapted home, or modify an existing home to accommodate a disability. Two grant programs exist: the Specially Adapted Housing (SAH) grant and the Special Housing Adaptation (SHA) grant.
The MVCN offers caregivers access to the highest quality peer support programs and services– online and in their communities– through collaboration with partner organizations, agencies and groups that share a commitment to reducing caregiver isolation.