This post is the second in a series produced for a Harvard Kennedy School field class on innovation in government. Our team is working with the U.S. Department of Veterans Affairs (VA) to improve services for family caregivers.
We knew our goal was to work with the U.S. Department of Veterans Affairs (VA) to develop a digital tool to better support informal caregivers — family and friends who care for a Veteran. We knew that a huge part of meeting that goal was to speak directly to caregivers and understand their daily experiences. But what we didn’t know was the depth and complexity of caregivers’ lives that we would uncover. After 25 interviews with caregivers, a dozen interviews with Veterans, two in-person site visits, and more than a dozen interviews with experts working across support, advocacy, and think tank organizations, here’s what we found:
“One of the ways I found out I was a true caregiver—in 2009, in middle of the night, I was picked up and thrown across the room.”
When Veterans return from service, their family members and close friends can face a major change in identity, but these family members don’t always identify as caregivers. Shifting their time away from career goals and personal aspirations, they put the Veteran first, and step into a role that includes juggling appointments and medication refills, raising a family, and running to the Veteran’s side when they wake up with nightmares in the middle of the night. Without even realizing it, these informal caregivers step into their role and work to absorb the pain of the Veteran while silently letting go of time for self-care.
Navigating a complex system
“The VA told me, ‘we don't have space for you, we [only] just started dealing with the Vietnam veterans.’”
Caregivers often find it difficult to locate or access the help they need, and in the early stages of their journey, they don’t always know how to connect with local resources and support that could make their lives easier. Many caregivers also struggle to understand eligibility requirements during the application process for caregiver support programs, only to receive a short letter in the mail stating that they did not qualify.
Lack of Support
“The civilian world doesn't get it. They don't understand where we're coming from, and I'd rather have someone who knows what I'm going through to open up with.”
Being the caregiver of a Veteran is a unique experience, with complexities that can best be understood by a fellow caregiver. As a result, many caregivers do not rely on formal networks to meet their needs. Rather, social media and online forums are connecting caregivers and providing emotional support and provide this group with the connection and support they need, in the most efficient way possible.
“I was teaching psychology at a local college. That was my ‘me time.’ That was my get-away, escape time. And I had to cut back … I had to give that up for his care.”
Finding ways to de-stress and maintain peace of mind can be challenging, especially when many caregivers have way too much on their plates. They are often managing upcoming healthcare appointments for their Veteran, assisting their Veteran with simple daily activities like eating or using the bathroom, and caring for school-aged children.
The challenges that caregivers face are both real and personal. Various parts of the interview process forced us to take a step back and take a moment to fully digest the emotional heaviness of the interviews. But these insights have made us incredibly eager to brainstorm innovative ways to transform the lives of caregivers for the better.
Dani Cinali, Brandon Lee, Amelia Sampat, Matthew Spector, and Katherine Spies