Peering into the Life of a Caregiver

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:

Identity

“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.

Balance

“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

How does an American hero find a hero?

Meet Jeff, a Veteran.  It has been three years since he returned from deployment in Afghanistan with the Marine Corps, and transitioned into a civilian life with a Traumatic Brain Injury, or TBI. For Jeff, getting up often feels impossible, sleeping comes in fits and starts, and he no longer remembers to take his medicines. But Jeff has hope: his spouse Paula, his full-time caregiver and parent to their children, is his personal hero.

Introduction. Of the more than 20 million Veterans in the United States, an estimated 5.5 million rely on a caregiver. Informal or family caregivers are a network of family, friends, and loved ones who support Veterans and enable them to access care and critical benefits. They are often jointly a case worker, spouse, parent, social worker, scheduler, advocate, medical records translator, financial expert, and navigator. These caregivers are an important connection to the broader system of care: as the physical and psychological impacts of service are better understood, “invisible wounds” like post-traumatic stress disorder and TBI increase the costs, standards, nature and measure of care, in addition to more visible challenges. Caregivers are often the first line of engagement around new ideas and approaches to care; according to former Senator Elizabeth Dole (R–SC), who has led a  national effort to define the role of the caregiver, “no national strategy exists to support caregivers…[and] it’s time to recognize, assist, include, support, and engage them.”

Reimagining Caregivers’ Access to Service, Solutions, and Community. The U.S. Department of Veterans Affairs is working to reimagine how it can meet Veterans’ evolving needs, including expanding offerings to caregivers to supplement existing services like the VA Caregiver Support portal (pictured below).

 The current portal for the U.S. Department of Veterans Affairs caregiver support – caregiver.va.gov

The current portal for the U.S. Department of Veterans Affairs caregiver support – caregiver.va.gov

This semester, our team of five Harvard students in a field class on Technology and Innovation in Government will help VA answer this challenge. Our areas of expertise:

Dani Cinali previously worked in policy in the New York State Governor’s Office, where she focused on streamlining State government operations and improving service delivery. Immediately prior to graduate school, she was a research consultant conducting consumer insights studies focused on innovation strategy, branding and market segmentation. A dual degree student between HKS and Tuck, her interests lie at the intersection of technology, business, and social impact.

Brandon Lee is an undergraduate at Harvard College studying Computer Science and Statistics. He likes to dig into data and make predictions. He has previously worked for Overstock.com, where he developed in-house “extract, transform and load” and classification apps within a larger data science pipeline for automated bidding on display advertisements. Following graduation, he looks forward to serving in the Marine Corps.

Amelia Sampat is a former child advocate and consultant, and current master in public policy candidate at the Kennedy School. Sampat’s leadership and advocacy for children in foster care included case management, analyzing case problems, and presenting recommendations in court. She is a former consultant with Booz Allen Hamilton working on client projects with Veterans Affairs, and most recently served as a consultant for mass.gov to measure the public value of its digital redesign.

Matthew Spector is a strategic communicator and former journalist. He most recently served as a visiting researcher in governance studies at the Brookings Institution, and he has previously worked in digital, social media, messaging and consulting for public and private sector clients, including IBM’s Smarter Cities Challenge, Mark Zuckerberg’s FWD.us immigration initiative, Obama for America 2012, UNICEF global public advocacy and UN Refugee’s New York content laboratory. He currently pursues a master’s in public policy at the Kennedy School.

Katherine Spies is an AH-1 attack helicopter pilot, experimental test pilot, and dedicated advocate for women in science, technology, engineering, arts, and mathematics. As an AH-1 pilot, Katherine flew over 320 hours in combat, leading more than 100 combat missions. As the Marine Corps’ first female helicopter test pilot, she flew over 30 types of fixed and rotary wing aircraft in support of Department of Defense aviation acquisitions. As a mentor and public speaker, Katherine leads initiatives for non-profits, schools, and Fortune 100 companies. Currently, Katherine is jointly enrolled in the Harvard School of Engineering and Applied Science and the Harvard Graduate School of Design.

Our team is focused initially on understanding the caregiver and their challenges. Family caregivers face increased personal risks, from shorter lives to increased anxiety and behavioral health issues. In addition to existing strain on caregivers, generational divides have made Veteran needs and interventions more complex. A 2016 Pew Report captured these shifts: the share of Veterans under 50 in the U.S. population is expected to grow to more than 33 percent of all Veterans by the middle of the century, and estimated a shift from a majority of Vietnam-era Veterans to a majority of those who served in the Gulf War era.

With this in mind, our guiding question is how can we better support these caregivers, particularly through digital tools and services?

Diving into the Research and Next Steps.  Our team’s research began by talking with Veteran affinity groups, Veterans Service Organizations like Wounded Warrior Project and the American Red Cross, and caregiver communities.

We’re eager to explore a variety of topics: mobile access to health records, family planning tools, health literacy and training applications, and simplified financial support. While VA has been focusing on improving digital experiences for Veterans, caregivers also demand a focus. On behalf of Veterans like Jeff and caregivers like Paula, our team is eager to apply skills, energy, and empathy to address the challenges caregivers face.

Amelia Sampat, Brandon Lee, Dani Cinali, Matthew Spector, Kate Spies