5 principles for easing the burden on caregivers

Becoming a caregiver can happen overnight. A change in condition, an unexpected accident, a life-changing diagnosis. For many of us, it’s a job with no prep time: Someone who was once just a partner, child, sibling, son, daughter, or friend is suddenly a caregiver. It’s already happened to 63 million informal caregivers in the US. It’s also happened to both of us.  

Caregiving is incredibly complex. We know what it’s like to constantly navigate tools that fail to meet our needs, as well as the systemic issues in our healthcare system that overlook and undervalue us, while expecting us to live up to an identity we stepped into by circumstance. Our needs shift based on the conditions of those we care for, the quality of the systems we engage with, and the gaps in experience and confidence that we continue to discover. 

As designers, we’ve partnered with companies to better serve the needs of this growing population. And out in the world, we’re seeing the emergence of many new services, from AI companions with emotional intelligence (like ElliQ) to robots that assist with manual tasks (like E-BAR). As the number of caregivers continues to increase, it’s essential that we get these products, services, and experiences right. Here are five principles for designing solutions that truly meet caregivers’ needs. 

1. Design for people who did not choose this role—and were not trained for it

During our research for a recent project, a caregiver told us, “Like most people, I didn’t even think about caregiving until my father was diagnosed with cancer.” Informal caregivers are unpaid and without professional training. They have to learn as they go, performing medical tasks, navigating complex systems, and advocating for their loved ones, all without the preparation or recognition that this role deserves. 

We need to prioritize designing tools and systems that make stepping into caregiving feel less like being thrown into the deep end, and more like having a calm guide by your side. (Particularly when 40 percent of caregivers provide high-intensity care, like administering injections and managing equipment, yet only 22 percent receive any kind of training.) That includes speaking in plain language and avoiding medical jargon, designing inclusive digital tools for people who may not be tech-savvy, and using simple visuals to summarize health data and make it actionable. Ultimately, it’s about designing for reassurance, not just task completion. 

What might that look like? Something like Abbott's FreeStyle Libre continuous glucose monitors. They quickly condense a constant stream of data into just a few colors that are easy to understand at a glance: green indicates that glucose levels are within the normal range, while orange or red signals that levels are dangerously low or high.

Another good example of designing for reassurance is The Sandwich Club, a community support network for parents and caregivers where anyone can find answers to caregiving questions, big or small. Designed by The Holding Co. to be as accessible as possible, it costs only $1 a month (free for regular contributors). The club fosters an active community of peers who share their knowledge, and it includes a helpful AI that provides immediate responses and highlights insights from the community. It’s an incredible resource for questions like, “Am I doing enough for my aging parent?” to “How can I encourage a disabled person to exercise regularly?” 

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2. Healthcare tools need to be accessible to patients—and everyone involved in their care 

Healthcare systems are designed to be patient-centered. That’s a good thing, but it can have unintended consequences. When caregivers need to talk with a provider or insurer on behalf of the patient, those systems often don’t recognize the caregiver and may even restrict their access. Many caregivers have spent countless hours on the phone with a call center simply to reset a patient’s password, only to use the patient’s login instead of their own to manage care. Caregivers should be authorized partners in care by default—not mere visitors who must repeatedly prove their legitimacy. Imagine how much more seamless the experience could be if every patient portal had a “care circle” view—where designated caregivers could see what patients need, message providers, manage tasks, and coordinate—without navigating permission mazes. 

These tools could draw inspiration from location sharing. When we can’t find a friend in a crowded place, we flip on our live location feature in a messaging app, Google Maps, or a service like Life360. While it shares highly precise GPS data, you can control how long you share that data—just an hour, or forever—and with whom. The New York Times also offers a simple model for shared accounts: each user receives a personalized experience, while collaboration is encouraged. 

3. Assume caregiving is a secondary role with primary consequences 

Sixty-one percent of family caregivers also work, according to AARP and the National Alliance for Caregiving. This means caregivers often have to make important decisions while managing complex schedules, fitting care in between meetings, late at night, or early in the morning.

Designers need to create tools for users with other roles, limited time and attention, and irregular usage patterns. Caregiving tools should allow users to pause, resume, and re-enter tasks without penalty. We need to facilitate decision-making in short time frames from anywhere—on a lunch break, in a parking lot, or at the grocery store.

We can draw inspiration from TurboTax’s save-and-return feature, which allows users to pause their tax prep and pick up where they left off. This feature respects people’s busy lives, lets them move at their own pace, and reduces anxiety about making mistakes or losing their progress while tackling complex tasks. 

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4. The true cost of care transcends medical bills 

Being a caregiver can be expensive. In addition to the physical and emotional toll, caregivers spend an average of more than $7,000 per year on out-of-pocket expenses, according to the Caregiver Action Network and AARP. These costs can include home modifications, medications, and transportation. Then there are the opportunity costs for careers, and income potential: nearly a third of workers, including senior executives, report their careers have been adversely affected by their caregiving responsibilities, according to a Harvard Business School study. 

Instead of assuming cost is incidental to care, health systems need to treat it as a primary factor in the patient experience. Caregivers need tools that clearly explain potential costs—from medical expenses to time tradeoffs—as well as help navigate them more easily. 

Rocket Money’s Subscription Finder is a strikingly simple tool that makes the invisible visible. Once you link your accounts, it surfaces auto-renewing expenses that you might have forgotten about, from subscriptions to streaming services, and then helps you cancel them (sometimes a multi-step rigamarole). No more missing yet another auto-renewal deadline

5. Caregivers are emotionally exhausted long before they are visibly overwhelmed

More than 60 percent of caregivers report symptoms of burnout, yet much of that strain remains hidden. Support should not only reduce friction but also create moments of reassurance and self-efficacy. Improving the experience of being a caregiver is a necessary part of sustaining care over time.

We need to build systems that not only track patients’ health, but also caregiver strain. Shared portals between patients and caregivers could offer tools for mental health care—meditation, counseling options, and help managing big sources of stress, like paying bills or understanding medical care. They could also include message boards where patients and caregivers could ask questions and share their experiences. 

We’re inspired by Soluna, a digital mental health platform for California youth, co-designed by IDEO and Kooth with 150 young people. Soluna integrates supportive conversations, self-reflection tools, and community connections to support users in moments when they feel vulnerable, uncertain, or overwhelmed. This approach serves as a model for caregiving tools, emphasizing the importance of treating emotional labor as essential infrastructure.

We know from personal experience how important interventions that reduce caregiver burdens are. We also know from our work in the health sector that this need will only continue to grow. By 2030, 73 million Americans will be over 65, and 70 percent of them will require care. Meanwhile, there is already a shortage of paid caregivers. More and more of us will need support to fulfill this role. And more and more of us will need designers to get it right. 

Looking back, early in our journeys, we didn’t think of ourselves as caregivers. Then things shifted. Our family members needed more support, and somewhere along the way, we realized we needed more, too. Now, with hindsight and the lens of human-centered design, we have a better sense of how health systems and care services need to improve, especially for informal caregivers. If we can do this, we believe we can improve care for everyone. Because more likely than not, we’ll all serve as caregivers one day. 

Looking to redesign your own products and services to benefit caregivers? Get in touch.