Medicare's enrollment files, not census rolls or hospital lists, are what defines who counts in federal dementia caregiving research. In practice this means data priorities for 2026 center on adults 65 and older covered by Medicare, with specific plans to add deeper dementia measures and compare caregiving to people with and without the condition. The core source is the National Health and Aging Trends Study (NHATS), paired with its companion survey of caregivers, the National Study of Caregiving (NSOC). Both draw their samples from Medicare enrollment records, which is why understanding who Medicare does and doesn't reach matters just as much as the dementia findings themselves.
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Official resources:
- Explore the official data from NIH — Use this primary source to review the underlying data.
- Explore the official data from NIH — Use this primary source to review the underlying data.
Table of Contents
- Who the Survey Actually Covers
- What the Data Already Shows About Family Caregivers
- What's Being Added in the Next Round
- Why Claims-Linked Data Is Harder to Reach
- Frequently Asked Questions
Who the Survey Actually Covers
NHATS samples from Medicare enrollment files, which cover about 96% of U.S. adults aged 65 and older. Round 1, fielded in 2011, sampled 12,411 Medicare beneficiaries aged 65-plus from 95 counties and 655 ZIP codes, oversampling Black individuals and the oldest participants to get stable estimates for those groups, according to NHATS/ICPSR documentation. That sampling frame sets a hard boundary on what the data can say. The weighted NHATS/NSOC estimates represent only Medicare beneficiaries 65 and older in the contiguous United States, according to NHATS design documentation published through Health Affairs.
Interview response rates were 71% in 2011 and dropped to 59% by 2022, per the same documentation. For adult children trying to place their own family's experience in this data, two groups fall outside it: the roughly 4% of seniors without Medicare, mostly people who deferred enrollment because they kept employer coverage, and everyone who didn't respond to the survey. Alaska and Hawaii are also excluded by the contiguous-U.S. design. None of this means the findings are wrong — it means they describe the Medicare-covered majority, not every older adult in the country.
What the Data Already Shows About Family Caregivers
Within that Medicare-linked population, the trend is a sharp rise in caregiving. A Wolff-led analysis of linked NHATS-NSOC data found the number of family caregivers to older Medicare beneficiaries grew from 18.2 million in 2011 to 24.1 million in 2022, about a one-third increase, according to Johns Hopkins Bloomberg School of Public Health. The same analysis, published online in Health Affairs in February 2025, reports that most family caregivers are the care recipient's adult children, though not a majority, and that caregiving relationships are typically long-term, usually lasting four or more years.
For adult children weighing what to expect, that duration figure is often the most practically useful number in the whole dataset: this is rarely a short-term arrangement. Among caregivers to older adults with dementia specifically, the burden intensified even more than the headcount suggests. Average weekly caregiving hours rose from 21.4 hours in 2011 to 31.0 hours in 2022, a nearly 50% increase, while the size of caregiving networks stayed roughly stable at about two caregivers per older adult, per the same Johns Hopkins and Health Affairs reporting. More hours spread across the same number of people points to individual caregivers absorbing more of the load, not more relatives stepping in to share it.
What's Being Added in the Next Round
The federal funder behind NHATS has directed the next phase of research toward closing gaps that adult-child caregivers would recognize. NIA funding notice RFA-AG-24-037 directs the next NHATS/NSOC award to expand cognitive and dementia measures, add dementia-specific care measures, build out residential and long-term care data, and introduce an accelerometry substudy (tracking physical movement with wearable sensors), implementing recommendations from the NHATS Data Monitoring Committee, according to the National Institute on Aging. A related, more targeted project is already underway.
A Johns Hopkins and University of Michigan team, led by Judith Kasper and Vicki Freedman with Jennifer Wolff as co-investigator, is running a new NSOC round built specifically to compare caregivers of people with Alzheimer's disease and related dementias against caregivers of people without it, adding a medical-care involvement module and two time-diary interviews, according to the Johns Hopkins project page. This builds on an earlier mandate: RFA-AG-19-019 had already directed NHATS to maintain representativeness of the Medicare population, enrich cognitive-capacity measurement, and continue linking survey responses to Medicare administrative claims records, per the National Institute on Aging. The 2026 priorities extend that work rather than starting over.
Why Claims-Linked Data Is Harder to Reach
The most detailed version of this research pairs survey answers with each beneficiary's actual Medicare claims — hospital stays, diagnoses, prescriptions — which is where dementia onset and severity can be verified against medical records rather than self-report alone. That link is also the part outside researchers can't simply download. Access to Medicare claims linked to NHATS/NSOC requires researchers to sign a data use agreement that must be renewed annually, and some NIA linkage files can take roughly a year to gain approval, according to ResDAC, the CMS-authorized service that documents this data.
That approval timeline limits which outside researchers, including those specifically studying adult-child caregivers, can analyze the claims-linked data at any given time. For a family member searching for research on their own situation, this explains a practical gap: the headline statistics on caregiver counts and hours are public well before the deeper claims-based studies on specific dementia subtypes or care pathways reach publication. The public-facing numbers and the claims-verified detail move on different clocks.
Frequently Asked Questions
Does this research include seniors without Medicare?
No. About 4% of adults 65 and older lack Medicare, mostly those who kept employer coverage and deferred enrollment, and they fall outside the NHATS/NSOC sampling frame, per NHATS design documentation.
Are most dementia caregivers adult children?
Most family caregivers to older Medicare beneficiaries are adult children, though not a majority of all caregivers, according to Johns Hopkins Bloomberg School of Public Health.
Can a family member access the detailed Medicare-linked data themselves?
The claims-linked files require a formal data use agreement renewed annually, with some approvals taking about a year, so this route is built for researchers, not individual families, per ResDAC.
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- NHATS and NSOC Dementia Care Data Priorities in 2026: What Is Established and What Remains Uncertain for Family Caregivers
- The NIA 2026 Dementia Care and Caregiving Summit Report: A 2026 Follow-Up Checklist for Adult Children
- The 2026 NIA Workshop on Comprehensive Dementia Care Models: What the Report Means for Adult Children
