Listening to Informal Caregivers: Outstanding Challenges and Needs

Background

At United States of Care, it is our mission to ensure that everyone has access to health care that is affordable, dependable as life changes, personalized, and easy to navigate. 

Earlier this year, we debuted our United Solutions for Care, which sets out twelve solutions for the health care system under four main goals. Under personalized care, providing support to caregivers emerged as one of our key solutions. 

Informal caregivers can be defined as those that are not professionally trained or compensated by institutions and that provide consistent care for family, friends, and loved ones. In 2020, there were more than 53 million informal caregivers in the United States, each with varying challenges to their caregiving role. Those can include financial strain, mental health struggles, difficulty navigating the caregiving role, and lack of support to ease burden. Informal caregivers also have varying identities based on their relationship with the care recipient, choice of caregiving, and caregiving for physical or mental disability. Although there are many challenges faced by caregivers, there is also much joy. 

“During that time… that was probably the least amount of money that I’ve ever made… but with what I was experiencing… it was also the wealthiest I’ve ever felt.” 

-Corrie H., caregiver

To better understand the needs of informal caregivers and potential policy implications, United States of Care conducted interviews with three caregivers with varying experiences. This piece will highlight the insights from these conversations, outline the related state and federal policy landscape, and demonstrate the need for policy innovation.

Financial burdens

Balancing health care costs and day-to-day living expenses already create financial burdens; however, caregivers face even more unique burdens. Out-of-pocket costs create challenges for informal caregivers as they navigate supporting their loved ones and financially providing for themselves and their families. In addition to medical expenses, informal caregivers often take on the day-to-day expenses of their care recipients. 

One informal caregiver noted that his parents are “living on [government support], living on food stamps . . . you know, barely head above water.” That means he’s taken on the financial responsibilities of “medical bills, clothing items, or whatever prescription we need to pay for whenever Medicare and Medicaid doesn’t pay.” 

-Hunter H., Voices of Real Life Member

Caregivers of color shoulder a particularly high burden of out-of-pocket expenses, as 20% of Black caregivers note experiencing financial strain and 34% report using their own income on caregiving responsibilities — substantially higher than White, Latino, and Asian American caregivers. These disparities are also seen when considering caregiver socioeconomic status, as those with lower socioeconomic position report larger burdens than those with higher incomes and caregivers who own their homes. 

To address the financial burden experienced by informal caregivers, states are creating more flexibility in self-directed care — the ability for care recipients to choose who delivers their care and how it is delivered — and federal legislation to compensate caregivers has been introduced. 

Medicaid Section 1915 waivers allow care recipients to receive their care in the home and community in which they live. Specifically, provisions in part 1915(j) allow states to decide if care recipients can choose relatives to serve as their caregiver. Self-directed care opens up opportunities for informal caregivers to be compensated for their role. 

At the state level, legislation was passed in Maine in 2021 that allotted $4.5 million to the state’s Department of Health and Human Services to create the Family Caregiver Grant Pilot program. It provides eligible family caregivers with up to $2,000 a year in compensation if they are not otherwise receiving payment for caregiving services. At the federal level, the Credit for Caring Act was introduced in the House and Senate in 2021. Although the bill is stalled as of August 2022,it would provide a new, non-refundable federal tax credit of up to $5,000 annually to help cover up to 30% of care expenses that exceed $2,000. 

Navigation & Integration into the Health Care Team

Informal caregivers are an integral part of recipients’ routines and health care experiences. There is a desire among caregivers for both a distinction between clinical and support caregiving and an ease of integration in the health care team. One participant noted how important it is to differentiate between providing medical and general care to care recipients.

“I always did set a boundary with [medical care] because I’m not a nurse and that was always very important to me because I didn’t want something really bad to happen on my watch, and then I’m held accountable for it. So the fact that they [care recipients] were all independent, not bed-ridden, and could use the bathroom on their own, that makes a world of difference.” 

-Corrie H., Caregiver 

At the state level, programs to support informal caregivers have been implemented. Idaho’s Family Caregiver Navigator pilot conducts a need assessment for caregivers and connects them to a family navigator. Additionally, North Carolina recently implemented a Family Caregiver for Older Adults hotline, where caregivers can immediately be connected to a Family Consultant to get their questions answered. At the federal level, the Raise, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act created a national caregiving strategy to help both the caregiver and care recipient through integration with their formal care team, and to provide support for care assessment and service planning, among other priorities. 

To integrate caregivers into care transitions, 42 states and D.C. have passed the Caregiver, Advise, Record, Enable (CARE) Act as of July 1, 2022. The CARE Act requires hospitals to utilize electronic health records (EHR) to include the name of caregivers on patient records, inform caregivers of hospital discharge, and to provide education on medical tasks on taking care recipients at home. However, there is room for improvement in the implementation of the CARE Act. Improvements can include enhanced notification processes for communicating with caregivers, acknowledgement of caregiver information on EHRs, and provider education on the caregiving role. Often, simply knowing how to find services for their care recipient’s needs is the most challenging part. 

One caregiver characterizes their experience navigating the health care system as “just astonishing . . . no one knows where to go, no one knows who to ask.”

 -Hunter H., Voices of Real Life Member 

Our listening sessions also revealed gaps in respite care outreach — a vital caregiver burnout prevention resource — to caregivers in rural communities. Rural caregivers often experience significant barriers due geographic location, lack of services, technical difficulty accessing virtual resources, financial hardship, and social isolation. 

“In a small town . . . Belleville, Illinois, population 40,000 with one hospital, I have no idea where to begin to look for that [respite care].” 

-Hunter H., Voices of Real Life Member

Mental Health & Caregiver Burn-Out

Caregiving creates mental and emotional strain on those who care for their loved ones. The COVID-19 pandemic exacerbated mental health issues for informal caregivers as more than 66% of caregivers of older adults reported having at least one negative mental or behavioral symptom in 2020. 

“It was the anxiety and fear that we were facing every day . . .  it ramped up the anxiety and mental health [issues] because my primary focus was to keep these two souls alive.” 

-Corrie H., Caregiver

Caregiver burnout is a unique issue experienced by caregivers that leads to severe physical, mental, and emotional exhaustion brought upon by their role. This burnout is often caused by the physical, mental, and financial demands of caregivers in their roles.

“One sleepless night, I’m on Google and there’s this caregiver burnout thing . . . there’s all these articles that popped up. On one hand, I thought ‘It’s not just me’ because you second-guess yourself honestly. Your brain is functioning for two people all the time, and that is exhausting. And it can be very isolating and very lonely because it’s not like everyone around you is doing this.” 

-Corrie H., Caregiver

Many state and federal policies aimed at providing relief to informal caregivers are utilizing respite care programs. The Lifespan Respite Care Program Reauthorization Act of 2020 became law in 2021 and reauthorized the Lifespan Respite Care Program until 2024. The program allows states to implement coordinated respite care programs and provide resources to caregivers on how to access services. 

Since 2009, 37 states have utilized that funding and provided varying resources to caregivers. For example, North Carolina is providing $500 in respite care reimbursement to unpaid caregivers, with a priority on those with high financial need. There is still a desire for respite care to fit personalized needs for relief. Although there is flexibility in how states allocate funding from the Lifespan Respite Care Program, there aren’t requirements for funding to be used to support low-income families. Our interviews uncovered an interest in state-funded programs that specifically provide respite care to low-income households to mitigate out-of-pocket costs. 

“There are so many programs that are out there for respite. But again, for us as parents, it’s very hard to go and just give your son or your daughter to these people, you need to trust them so much . . . The programs are good, they are there, but the people are not ready . . . the amount they’re getting paid per hour is not enough.” 

-Elizabeth N., Voices of Real Life Member

Conclusion 

Through national data sets and conversations with caregivers, we learned more about the challenges experienced due to racial/ethnic identity, rurality, income, and type of caregiving. However, more research is needed to best understand the disparities, burdens, positive experiences, and policy needs of informal caregivers. 

We have also learned from our conversations that there are diverse needs with areas for innovation to better support caregivers. Providing support to caregivers is key in moving us closer to a health care system in which people can get the care that they need, when and how they need it. We hope to continue listening to caregivers, understanding their needs, and determining where United States of Care can make the most impact. 

This piece was informed by research conducted by Third Horizon Strategies in support of United States of Care’s United Solutions for Care.