Unpaid dementia care, help from family and friends without pay, totals $237 billion for 6.8 billion hours, the USC Schaeffer Center reports the USC cost study. Long-distance caregivers living an hour or more away can help with money, bills, home care, and local contacts. The same USC estimate puts total societal cost at $818 billion in 2025 dollars for 5.7 million adults age 51 and older. Care comes from about 5.2 million care partners, often in prime working years.
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
- How large is the unpaid share?
- Why do families carry most of the cost?
- What did the March summit set up?
- What can you do from an hour or more away?
- Which caregiver counts should you not mix?
How large is the unpaid share?
Those 5.2 million caregivers provide 6.8 billion hours without pay. That time is valued at $237 billion. It equals 29% of all dementia costs.
Medical and long-term care totals $222 billion. It includes $110 billion in Medicare, $44 billion in Medicaid, and $46 billion out of pocket. Public programs cover about 70% of that medical care, the U.S. Cost of Dementia Project reports via MedicalXpress.
Why do families carry most of the cost?
People with dementia and care partners together forgo $23 billion in yearly earnings. Patients face $320 billion in quality-of-life loss. Care partners face another $15 billion, the Association of Health Care Journalists reports.
About 80% of the $818 billion burden falls on families. That includes unpaid care, lost earnings, out-of-pocket spending, and quality-of-life losses. It does not sit in medical budgets alone, Drugs.com reporting on the USC study notes.
What did the March summit set up?
The 2026 NIA Dementia Care and Caregiving Research Summit met virtually March 17-19, 2026, HHS ASPE notes the HHS ASPE meeting summary. Recordings and a final report will be posted. They will inform NIH milestones and the National Plan to Address Alzheimer's Disease.
The summit report highlights research gaps and care priorities rather than one treatment. It points to data tools such as the LTC Data Cooperative. Persistent data silos and access barriers remain, McKnight's Senior Living reports on the NIA report.
What can you do from an hour or more away?
Distance does not block high-value help. The National Institute on Aging advises specific tasks for caregivers living an hour or more away the NIA long-distance caregiving guide.
Pick one money task and one local-contact task this week. Write both in the care notebook. Share the notebook with every helper.
- Handle finances and money management, including paying bills
- File and track insurance claims
- Arrange in-home care with local providers
- Keep a care notebook with needs, visits, and contacts
- Coordinate local contacts for check-ins and follow-through
Which caregiver counts should you not mix?
Alzheimer's Association 2025 Facts and Figures counts nearly 12 million caregivers giving over 19 billion hours valued above $413 billion. That total is larger than the USC model. Methods, populations, and valuation differ, so do not mix the two sets.
Use the USC numbers when you compare shares of the $818 billion total. Use the Association numbers only when you discuss its own national survey scope. Mixing them overstates hours and dollars for one family.
You Might Also Like
- Unpaid Dementia Care Costs in the 2026 NIA Summit Report: What the Report Establishes and Leaves Unanswered for Long-Distance Caregivers
- Unpaid Dementia Care Costs in the 2026 NIA Summit Report: What Long-Distance Caregivers Can Check in Their Community
- Unpaid Dementia Care Costs in the 2026 NIA Summit Report: Cost and Access Questions for Long-Distance Caregivers
