For family caregivers, the established picture from the two federal datasets that track dementia care is simple: the work has grown, and it has grown most for the people caring for someone with dementia. What remains uncertain is the near-term data itself — Round 15 of the caregiver survey has no announced public release, and the repository that holds the files carries a notice that it is under review.
The National Health and Aging Trends Study (NHATS) is a nationally representative panel of Medicare beneficiaries aged 65 and older, interviewed every year. The National Study of Caregiving (NSOC) interviews the family and unpaid caregivers those older adults name. Together they are the main source for almost every national figure you see about how many hours American families spend caring for a relative with dementia.
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 two surveys actually measure
- The established trend: more caregivers, far more hours
- How dementia caregiving differs from other caregiving
- Where the numbers are conservative or contested
- Why 2026 trend claims need a date check
- Using these figures when you need to make a case
- Frequently Asked Questions
What the two surveys actually measure
NHATS follows the same older adults year after year, which is what makes change over time visible rather than guessed at. When a participant dies, the study conducts a "Last Month of Life" interview with a close family member. According to the National Institute on Aging's program page, NSOC then interviews the unpaid caregivers those participants identify — so the caregiver sample is anchored to a real, representative sample of older people, not to volunteers who answered an ad.
Dementia status is assigned by NHATS every round, and it is a three-way classification: probable, possible, or no dementia. A participant is counted as probable dementia on any one of three grounds — a reported doctor's diagnosis, a proxy respondent's AD8 screening score of 2 or more, or cognitive testing at or below 1.5 standard deviations in two of three domains covering memory, orientation, and executive function. That matters for reading any headline number. "Probable dementia" is a research category built from screening and testing, not a clinical chart review of each person.
The established trend: more caregivers, far more hours
The count of family and unpaid caregivers supporting older US adults rose roughly 32%, from 18.2 million in 2011 to 24.1 million in 2022, in a Johns Hopkins and University of Michigan analysis of NHATS and NSOC published in Health Affairs. The hours did not spread evenly. Weekly unpaid care hours for older adults with dementia rose nearly 50%, from 21.4 to 31.0 hours, while hours for older adults without dementia fell slightly, from 15.3 to 13.9, according to the Johns Hopkins Bloomberg School of Public Health summary.
Thirty-one hours a week is close to a second job. Two further findings from the same Health Affairs analysis point to where that time came from. Employment among dementia caregivers fell from 42.5% in 2011 to 34.6% in 2022, and 2022 caregivers were more likely to live with the person they assist. Households absorbed the increase; paid services did not.
How dementia caregiving differs from other caregiving
The federal chartbook on this population, published by HHS's Office of the Assistant Secretary for Planning and Evaluation, puts the gap in monthly terms. ASPE's NHATS/NSOC key indicators report finds an average of 127 total monthly unpaid care hours for community-dwelling older adults with dementia, against 58 hours for those without. The type of help differs too, not just the amount.
In the same chartbook, 79% of dementia caregivers help the person interact with the health care system — appointments, insurance, prescriptions, talking to clinicians — compared with 61% of other caregivers. That is administrative and advocacy work on top of hands-on care, and it is the part most often invisible to employers and benefit programs. If you are new to this role, those two numbers are a reasonable planning baseline: expect roughly double the hours of non-dementia caregiving, and expect a substantial share of it to be health system navigation rather than personal care.
Where the numbers are conservative or contested
Published NHATS-based dementia caregiving counts understate the affected population. The ASPE chartbook counted only people meeting "probable dementia" criteria and states plainly that this definition is conservative, because people who meet NHATS "possible dementia" criteria are excluded. Families in that middle category are doing real care that the headline figures do not count.
Survey and claims-based estimates also disagree, and the disagreement is unresolved. Measured against NHATS probable dementia, Medicare claims-based dementia algorithms showed sensitivity of only 48.8% to 70.5%, with specificity of 91.5% to 97.8%, in a 2025 study in the Journal of the American Geriatrics Society. The authors caution that NHATS is not a gold standard either, so neither method can be treated as the correct answer. Practical reading of that: claims data misses a large share of people a survey screen identifies as having dementia, which is one reason billing-based prevalence counts and survey-based counts do not match.
Why 2026 trend claims need a date check
NSOC was not fielded in every NHATS round. Public files exist only for Rounds 1 (2011), 5 (2015), 7 (2017), and 11 through 14 (2021–2024), per the NHATS data access pages. Any pre-2021 trend line therefore jumps across multi-year gaps, which is why the widely cited comparison is 2011 versus 2022 rather than a smooth annual curve. That changed recently in a useful way.
Beginning with Round 14, NSOC provides annual longitudinal files and weights, so year-to-year comparison becomes possible going forward rather than being stitched together from scattered rounds. The near-term supply of new data is the open question. NSOC solicited supplemental modules for Round 15 (2025), expecting roughly 3,000 caregivers of living participants and about 250 last-month-of-life caregivers. No Round 15 public data release is announced, and the NHATS announcements page carries a notice that the repository is under review for potential modification in compliance with Administration directives, alongside a reissue of Round 12 files.
Using these figures when you need to make a case
One concrete caution when you reuse these numbers: 2022 is the most recent year in the Health Affairs trend analysis, so a figure presented as current dementia-caregiving hours is a 2022 measurement, and the newer rounds have not yet replaced it in published trend form.
- Citing hours to an employer or HR: use 31.0 weekly hours for dementia caregiving in 2022, from the Health Affairs analysis, and name the source and year.
- Citing monthly totals to a care manager or benefits program: use 127 monthly hours with dementia versus 58 without, from the ASPE chartbook.
- Making the case that your own load is undercounted: the probable-dementia-only definition excludes possible dementia, and ASPE says so in the report itself.
- Encountering a conflicting prevalence number: check whether it came from claims or from a survey screen, because the two disagree by design.
- Watching for new data: the last confirmed public NSOC round is Round 14, covering 2024.
Frequently Asked Questions
Are NHATS and NSOC the same study?
No. NHATS interviews the older adults. NSOC interviews the unpaid caregivers those older adults name, which is why the two are usually cited together.
Does a "probable dementia" classification in NHATS mean a doctor diagnosed it?
Not necessarily. It can rest on a reported doctor's diagnosis, a proxy AD8 score of 2 or more, or cognitive test performance at or below 1.5 standard deviations in two of three domains.
Why do Medicare-based dementia counts differ from survey counts?
Claims-based algorithms identified only 48.8% to 70.5% of people NHATS classified as having probable dementia, per the 2025 Journal of the American Geriatrics Society study. Their specificity was high, so they miss cases more than they over-count.
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