Unpaid dementia care — help from family and friends without pay — accounts for $237 billion of $818 billion in 2026 U.S. dementia costs. For long-distance caregivers, the summit measure leaves travel-heavy expenses and retirement losses uncounted.
The National Institute on Aging convened its 2026 Dementia Care and Caregiving Research Summit virtually March 17-19 to set research gaps. An NIA-funded model supplies the dollar estimates. According to UCSF Geriatrics, the meeting aimed to define priorities rather than endorse one treatment in its UCSF Geriatrics summit summary.
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 $818 billion total includes
- Why another national count looks larger
- What distance adds to out-of-pocket spending
- What long-distance caregivers can track now
What the $818 billion total includes
The NIA-funded 2026 model divides total U.S. dementia costs into medical, public-program, and family-care parts. It places medical and long-term care at $222 billion. The same analysis is detailed in the NIA-funded 2026 cost model. Within that total, the model adds $110 billion in Medicare spending and $44 billion in Medicaid spending.
It also counts $15 billion in caregiver quality-of-life loss and $9 billion in forgone caregiver earnings. Those program and caregiver-loss amounts sit alongside the $237 billion unpaid-care value. Unpaid care in this model equals 6.8 billion hours from about 5.2 million family members and friends. That definition matters because it ties dollars to counted hours. A caregiver who is not counted in those hours is not in that dollar figure.
Why another national count looks larger
The Alzheimer's Association reports nearly 12 million Americans provide over 19 billion unpaid dementia-care hours yearly. It values those hours at over $413 billion, as shown in the Alzheimer's Association November 2025 figures. The gap reflects scope and valuation method, not error in one source. Hour counts rise when more helpers and more tasks qualify.
Dollar values rise when hours are priced at a higher replacement wage. For readers, the lesson is practical. Use the NIA-linked model to compare medical, Medicaid, Medicare, and unpaid-care shares. Use the Association count to grasp the wider national load on families.
What distance adds to out-of-pocket spending
AARP finds over three-quarters of caregivers pay out of pocket, averaging $7,200 per year. That average equals about one-quarter of income for many caregivers. Distance pushes the amount higher. Caregivers living more than one hour away face the highest costs at $11,923.
According to AARP, those costs cover travel, household, medical, and coordination expenses in its AARP fact sheet on family caregiving costs. The pattern is easy to picture. A daughter flies in for a weekend, pays for fuel or airfare, stocks groceries, hires a short-term aide, and takes time off work. Each trip is small alone, but repeated trips become a second household budget.
What long-distance caregivers can track now
Start with the expenses the main model prices least directly. Keep travel receipts, lodging bills, mileage logs, aide invoices, and respite payments in one folder.
Note missed work hours and unpaid leave beside them. Use that record to target relief: AARP backs a Credit for Caring Act credit up to $5,000 for aides, respite, and transport. Save aide, respite, and transport receipts in the same place so a future claim is easy to document.
- group tasks into fewer trips and assign one local contact for daily checks
- buy respite or aide hours for coverage gaps, not only crises
- separate medical, household, and travel costs before asking about aid or tax help
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