Insurance fragmentation means dementia care is split across Medicare, Medicaid, private plans and family budgets, not one payer. Long-distance caregivers can close gaps by searching local services by ZIP code and asking the primary caregiver what help is needed most. The NIA-funded U.S.
Cost of Dementia Project put the total 2026 U.S. burden at $818 billion. The estimate was published June 24, 2026 in Alzheimer's & Dementia by USC-led authors, according to USC Schaeffer's research 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
- Why coverage feels split
- What the $818 billion total includes
- How to help from far away
- What to check by ZIP code
Why coverage feels split
Of $222 billion in 2026 medical and long-term-care spending, Medicare and Medicaid covered about 70%, or $154 billion. Patients and families paid about 20%, or $46 billion, out of pocket, USC Schaeffer reports.
Medicare generally does not pay for long-term custodial care when that is the only need. That includes help with bathing, dressing, eating or supervision, plus 24-hour home care, notes the Washington State Office of the Insurance Commissioner in its Medicare coverage guide. Those gaps leave costs to Medicaid, private insurance or families.
What the $818 billion total includes
About 5.2 million unpaid caregivers, often working-age family or friends, gave 6.8 billion hours valued at $237 billion. People with dementia and partners also lost $23 billion in forgone earnings, USC Schaeffer reports. Quality-of-life losses added $320 billion for people with dementia and $15 billion for care partners.
Together with unpaid care, earnings losses and out-of-pocket costs, families bear about 80% of total costs, according to the NIH PubMed Central record. The Alzheimer's Association's 2026 Facts and Figures counts a smaller paid-care total: $409 billion, with $263 billion from Medicare and Medicaid. It excludes the value of unpaid care, which explains the gap to the $818 billion total, according to ElliCares' summary of the Association report.
How to help from far away
The National Institute on Aging lists practical ways to share work from afar. They include asking what is most needed and staying in regular contact with the primary caregiver, as described in its long-distance caregiving guide. Useful tasks to take on include:.
- travel to give the primary caregiver respite
- organize appointments, finances and paperwork from afar
- schedule regular calls that reduce check-in burden
What to check by ZIP code
Use the person's ZIP code, not yours. The Alzheimer's Association and AARP Community Resource Finder finds local dementia and aging services by ZIP code, described in their 2018 program announcement.
Look in one search for: Share the short list with the primary caregiver and ask which option to call first. Book one need, such as a ride or a respite day, before adding more.
- adult day programs near their home
- transportation options for appointments
- local Association programs and aging services
You Might Also Like
- 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
- The $781 Billion Dementia Economic Estimate in the 2026 NIA Report: Care-Planning Implications for Spouses and Partners
