The National Institute on Aging's 2026 Dementia Care and Caregiving Research Summit found that unpaid family and friend caregiving for dementia costs $237 billion a year in the United States, part of a broader $818 billion national burden. The summit, held virtually March 17–19, 2026, with its report published in August 2026, flagged care coordination across states and systems as a specific unmet need — a gap that falls hardest on caregivers who do not live near the person they care for. That combination of findings matters directly to long-distance caregivers. The economic numbers show how much unpaid labor already props up the dementia care system, while the coordination findings explain why distant caregivers often feel locked out of decisions made at the bedside or in a doctor's office hundreds of miles away.
Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.
Table of Contents
- What the summit's cost findings actually show
- Why caregivers lose income on top of these costs
- The care coordination gap the summit identified
- How many caregivers are affected by distance
- What's being built to close the gap
What the summit's cost findings actually show
the National Institute on Aging's summit report organized its sessions around five research areas, including the economic impacts of dementia care, data infrastructure, and care coordination across systems and states. The economic session leaned on the NIA-supported U.S. Cost of Dementia Project, which put the total 2026 cost of dementia in the United States at $818 billion. Of that total, the USC Schaeffer Center's analysis attributes $237 billion to unpaid caregiving provided by family and friends.
About 5.2 million people provided 6.8 billion hours of that unpaid care in 2026. These are hours spent managing medication, attending appointments, and handling daily tasks that would otherwise require paid staff. The remaining $222 billion covers medical and long-term care spending. Medicare and Medicaid pay roughly 70% of that figure, or $154 billion, while patients and families cover about 20%, or $46 billion, out of pocket. That out-of-pocket share is where long-distance caregivers often absorb costs that local caregivers can spread across more visits and closer oversight.
Why caregivers lose income on top of these costs
Beyond the direct caregiving hours, the summit's economic session pointed to a separate drain: lost earnings. Caregivers and people with dementia together forgo about $23 billion a year in income, according to the USC Schaeffer Center's research, reflecting caregivers who reduce their work hours or leave jobs entirely to provide care.
This loss lands differently depending on distance. A caregiver who lives nearby can often fold care tasks into an existing routine. A caregiver who has to travel hours or fly in for a crisis loses paid work time to travel itself, not just to caregiving tasks, compounding the $23 billion figure for this specific group.
The care coordination gap the summit identified
One summit session, "Dementia Care Models and Care Coordination Strategies for Dementia Across Systems and States," chaired by Lee Jennings, MD, MSHS, examined gaps in coordinating care as patients and caregivers move between providers, states, and settings. This session targeted exactly the friction long-distance caregivers describe: care plans that do not transfer cleanly between a hospital, a home health agency, and an out-of-state family member trying to track all of it. Separate research reinforces how widespread this problem is.
A University of Oxford-affiliated study protocol defines distance caregivers as those an hour or more of travel away, and finds this group often receives less support from health and social care services and is not consistently consulted by providers making care decisions. That exclusion compounds the financial burden already described. A caregiver who cannot get timely updates from a care team is more likely to make last-minute trips, miss work without notice, or pay for services closer caregivers might otherwise coordinate without extra cost.
How many caregivers are affected by distance
Distance caregiving is not a small subset of the dementia caregiving population. An NIHR dementia-research webinar listing cites that roughly 20% of informal caregivers nationally provide care from a geographic distance.
Applied against the 5.2 million unpaid dementia caregivers identified in the U.S. Cost of Dementia Project, that share points to over a million people managing dementia care long-distance in the United States. The summit's care-coordination session was built to address the service gaps this group reports, rather than treating distance caregiving as a rare edge case.
What's being built to close the gap
Researchers are not only documenting the problem — they are testing interventions aimed at it. A LeadingAge LTSS Center study, funded by the National Institutes of Health, is developing and testing an intervention called LDCare, built specifically for long-distance caregivers of older adults with dementia who are receiving home care.
LDCare targets the exact gap the NIA summit's coordination session flagged: caregivers who are not physically present but still need reliable information and a role in decisions. For a long-distance caregiver today, that means asking a home care agency or care team directly whether a coordination or communication protocol exists, rather than assuming distance automatically excludes them from decision-making.
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