Opportunities in the hidden costs of caregiving

He had taken a disability leave from work to prepare for the removal of a tumor on his spine. The drives to his appointments had become routine, each trip a reminder of how much his body was changing—and how much he now relied on me. He said, “I’m going back to work after my surgery.” Despite my uncertainty, I didn’t argue. The surgery gave him a 50 percent chance of walking again, and for him, that was enough. But the probability alone was not enough to prepare me for what came next.  

At 22, I came face-to-face with the hidden costs of healthcare when my father became paraplegic. Since then, I’ve become his sole full-time caregiver. This role has profoundly shaped my perception of the healthcare system—not only exposing the many gaps in healthcare but also the massive opportunities to improve how care is designed and delivered.

Today, alongside my role as a caregiver, I am an interaction design fellow at IDEO, where I spend my days collaborating with other designers to shape and refine human-centered experiences. Part of our job is to listen with empathy to user pain points to craft useful solutions that foster trust and understanding. As both a caregiver and a designer, I deeply understand these pain points and how we can design solutions that ease the burden on the 24 million caregivers in the US alone—whether it’s creating clear, comprehensible medical bills or developing devices that help prevent further health complications. Here are four massive opportunity areas I believe we need to solve for.

Mitigating enormous burnout

The first few years were by far the most difficult. My peers were embracing the newfound freedom of adulthood, while I was responsible for everything from dealing with insurance companies to daily cleaning and bandaging his stage-four wounds. I was in and out of the hospital, drowning in paperwork and trying to make sense of my father’s condition, his medications, new routines, and medical bills. I spent countless hours battling with insurance reps, demanding appeals, chasing down unreliable case managers, and pushing charge nurses to advocate on my father’s behalf. The burnout was debilitating. But there are so many opportunities to lessen that load.

Technological tools that patients and their families can trust can help close the gap in an inequitable healthcare system. Already, AI tools like Hyro AI and SICURA by Nohold are taking on some of these pain points by reducing the complexities of dealing with insurance, treatment options, and medical jargon. Hyro AI is even integrated into many electronic health record systems, allowing patients easy access to their personal health information to understand and manage treatment.

But what if AI patient advocates could take things a step further, flagging biases, challenging questionable denials, and assisting with appeals? As insurance companies increasingly use AI to deny claims, such a tool could help level the playing field, ensuring that vulnerable patients aren’t silenced by the very systems meant to support them.

Navigating the system

My father was hospitalized for over a year following his surgery, moving between the ICU, skilled nursing facilities, and acute rehab centers. Each stay brought hefty bills, frequently arriving months later with little clarity about their origins. They were outrageously expensive, and I struggled to understand what we actually owed—or why we owed it in the first place. Between the maze of Medicare, state programs, and private insurance, determining financial responsibility was completely overwhelming, and cost transparency was non-existent.

What if medical bills were as clear as itemized receipts, with straightforward descriptions alongside hospital codes? Originally designed to prevent fraud, medical billing systems rely on cryptic codes like “ICD-10” and “CPT”—effectively standardizing claims but making them nearly impossible for patients to decipher. While these systems serve the industry, they often do so at the expense of patient transparency and accessibility. An app that translates these complex codes into a simple, easy-to-read breakdown would be invaluable.

Beyond that, there’s an opportunity to design a visual progress tracker or dynamic dashboard, helping caregivers and patients manage payments, track processing status, and reduce the financial guesswork that adds unnecessary stress to an already difficult journey.

As a young adult learning to manage my own financial responsibilities while taking on my father’s, I found myself in need of a financial “buddy”—someone who understood my situation and had the expertise to guide me. While some companies, like the AI app Cedar, are tackling this issue, there’s still significant potential for innovation in this space.

Providing physical care

Whenever my father developed a stage-four bedsore, I had to administer IV antibiotics every six hours for eight to 12 weeks. During these times, I was stuck at home, bound by the six-hour window, having to reposition him every two hours to help the wound heal and prevent new sores from forming.

When you care for someone with limited mobility, bed sores are one of the most challenging issues. In the US alone, nearly 60,000 people die from bed sore complications annually. They emerge shockingly quickly and can go from the size of a nickel to so deep you can see bone. For caregivers, the physical toll of lifting and repositioning their loved ones can be overwhelming; it often left me physically drained and emotionally exhausted.

After dozens of hospital trips and many sleepless nights, I decided to invest in a specialized bed that could handle repositioning. But insurance doesn’t cover them. And they range from $2,000 to $15,000. A pressure-relieving mattress adds another $500 to $3,000, and professional assembly—often required—can cost an additional $200 to $500.

Imagine if there was a smart, modular bed for paraplegics that automatically adjusted using an AI-powered scanning app to track movement and prevent pressure sores. It could offer personalized configuration by allowing users to add or remove features as needed, enabling customization at home. Additionally, an affordable smart mattress that monitors sores and relieves pressure could greatly benefit both the caregiver and the patient. Accompanied by an AI-powered scanning app, the bed could track movement and prompt timely repositioning. Companies like Tidewave and Arjo already use technology to help mitigate bedsores, and the ForeSite Intelligent Surface (IS) by XSENSOR uses AI to monitor the real-time emergence of sores. However, these solutions are largely limited to hospital settings. If a company could create an affordable version for home use, it could significantly improve the lives of millions of patients and their caregivers.

Accessing home modifications

When my father was discharged from the hospital, it was up to me to find a wheelchair-accessible home in the Bay Area. Whether it was too-narrow doorways, steps, or tight corners, none of the homes I toured had the necessary modifications for him to navigate in his power wheelchair. The home we finally found had enough space to meet his mobility needs, but we still had to pay out of pocket for ramps, touchless light switches, and other accessible features. Even now, he can’t leave the house on his own. He can’t reach the door handle from his wheelchair, and the ramps are too narrow for him to safely navigate alone, leaving him at risk of getting stuck—something that has happened more times than I’d like to count.

Instead of having to tour each house with a tape measure in hand and the wheelchair measurements stored in my phone, it would have been incredibly helpful to have an app that could instantly tell me if a wheelchair would fit through the doorframe or if adding a ramp was feasible.

Imagine if that app connected to stores like Home Depot or Amazon, curating a list of items I could purchase directly, without the hassle of checking measurements myself. Or, what if real estate or rental apps had a special section for homes that had already been modified or were built with accessibility in mind? With the right tools in place, I could have avoided much of the uncertainty and frustration, making the journey to find an accessible home much smoother for both my father and me.

What began with inexperience and uncertainty has evolved into a journey of growth and adaptation, both as a caregiver and a designer. Together, my father and I have learned a lot about how to live our new life—and each other. It has not been easy. And there is so much opportunity for insurance companies, healthcare providers, and startups to alleviate the unnecessary stress for caregivers and their loved ones. As the caregiver population continues to rise, the need for innovation is clear—without it, millions will continue navigating these challenges alone. As designers, we’ve only scratched the surface—there is so much more that we can do.