Sperber: Honoring the family caregivers who support our veterans

November marks both Veteran’s Day and National Family Caregivers Month. While they may seem like disparate events and distinct populations, these two occasions together directly affect the 5.5 million people who provide care to current and former military members in the United States.

One veteran who served in Iraq and Afghanistan sticks in my memory. His family told me that he is not the same person they once knew. He looks the same, but his behavior and being have changed to the point that his former self is unrecognizable. Where he used to be happy, he now experiences mostly pain, anger and depression.

Both he and his family see his needs in a way that his providers never will. His VA provider had suggested that he find a caregiver, and he immediately turned to his family to fill that role. Because he is in the VA health care system, his family was able to receive training and services on how best to support him.

As someone who has worked closely with the Department of Veterans Affairs’ Caregiver Support Program in a research and evaluation capacity, I have observed the challenges that family caregivers face, especially within a complex health care system like the VA. I have also seen those caregivers overcome all obstacles, mostly through perseverance, to make a significant impact on the care we provide to our veterans.

The VA health care system is the largest provider of support for caregivers in the U.S., with a dedicated Caregiver Support Coordinator at more than 150 medical centers nationally, since Congress passed the Caregivers and Veterans Omnibus Health Services Act in 2010. There is also a toll-free Caregiver Support Line and additional services for veterans who suffered a serious injury related to their post-9/11 military service and those who look after them.

It’s not surprising that these caregivers are the people most familiar with the needs of these veterans, but they are often not privy to the development of care plans or the complexities of a large health care system. Unless they demand to be included, they are often an overlooked resource for the veteran’s health care team.

This is a wasted opportunity. These caregivers have cultivated comprehensive knowledge of wound care, safe transfers, PTSD, depression, diabetes, ALS or dementia, to name a few. They have learned about side effects and drug interactions; researched diet, sleep or non-traditional approaches to care; and have learned to recognize warning signs. They’ve had to figure out who to reach out to for the veteran’s care, learning by trial and error, who will listen, support and assist, and who will not.

They are older and younger, spouses, mothers or friends. Many hold full-time or part-time jobs, but also may function as companions, chauffeurs, case managers, advocates, referees, counselors, accountants, pharmacists, physical therapists and nurses.

I appreciate the difficulty faced by these caregivers. Many may not even regard themselves as a “caregiver,” a significant barrier to reaching them with service and support.

Now, the VA Mission Act of 2018 mandates that services, to veterans and their caregivers from all service eras, be expanded. For many, this cannot happen soon enough. Caregivers do an incredible job in the face of a seemingly unending list of daily demands, but so many will benefit from training, resources and support. The reality is that this need is so great and caregivers’ time is so limited, it can be quite challenging to meet those needs.

This is why I would encourage health care systems to recognize caregivers as having a distinct and valued role in the care team, and policymakers to look to the VA as a model for developing and implementing a national strategy for support.

Nina Sperber is an assistant professor of population health sciences at Duke University and a health services researcher with the Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT) at the Durham VA Health Care System.