Caregiving can be hard to measure because it happens so often, and to varying degrees. A new survey sought to quantify both, finding that one in ten U.S. adults lives in a rare disease household and that their caregivers experience more stress than other caregivers.
Among those who care for a patient with a rare disease, 69% reported feeling stressed out, compared with 49% in other caregiving households, according to research from ARCHANGELS and the research firm SSRS.
Along with health and technology strategist Susannah Fox, ARCHANGELS and SSRS fielded the first probability-based U.S. national survey to measure the rare disease population. Using the Caregiver Intensity Index, developed by ARCHANGELS, the researchers also compared the caregivers’ reported level of stress and burden. The index tool asks whether caregiving has made the caregiver’s day-to-day life unpredictable, if family members disagree over caregiving and how being a caregiver has impacted them financially.
“Rare caregivers’ mettle is being tested,” Fox wrote in her research summary. The survey found that 55% of adults living in rare disease households provided unpaid care to a family member or friend who has a rare disease. Almost half said they feel unprepared, and 63% said the caregiving situation is unpredictable or unstable, more so than was reported by people in other caregiving relationships.
The Intensity Index color codes the caregiver experience – red for high intensity, yellow for moderate intensity and clear for low intensity. The survey found 36% of rare caregivers are in the red compared with 25% of all caregivers in the U.S.
Support from family, friends, coworkers and the health care system can change the equation, the researchers found in a 2025 report called Caregiving in America. Only 14% who felt supported were in the red zone – a number that grew to almost half when support was lacking.
Despite the strain, caregivers are seeking innovative solutions, the survey found.
“Fifty percent of U.S. adults living in rare disease households have gone online to find other people who might have health concerns similar to theirs in the past year,” according to Fox.
Nearly 40% of caregivers are going a step further, using AI tools like ChatGPT and Gemini to learn about treatment options.
“Caregivers are innovators. They are using every tool available to them, from peer networks to digital platforms, to carry the load. This survey helps us understand both their struggles and their resourcefulness,” Fox wrote. She’s also the author of the book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care.
Learn more about the Caregiver Intensity Index. Take the assessment yourself or share with a caregiver.
