In 2026, NHATS, a panel of older adults, and NSOC, a survey of their unpaid helpers, are the priority data for dementia caregiving. They measure community caregiving well but miss nursing-home care and use a narrow dementia definition.
NHATS interviews Medicare beneficiaries ages 65 and older in person about disability, thinking and daily life. NSOC then calls unpaid helpers who assist those adults with self-care, mobility, household, transportation or medical tasks. The National Institute on Aging made this linked survey system a 2026 priority for dementia-care research.
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 the two surveys fit together
- Why 2026 put this data first
- Who gets counted — and who does not
- How to read the numbers for your family
How the two surveys fit together
NHATS is an annual, nationally representative panel running since 2011, led by Johns Hopkins and the University of Michigan with NIA funding, according to the Johns Hopkins issue brief. It tracks the same older adults over time through in-person interviews. NSOC is its companion telephone survey.
The National Academies describes NSOC as interviewing up to five family or other unpaid helpers for each NHATS participant who received help. That design ties each helper back to a specific older adult. Researchers can then link survey answers to Medicare data. That link lets analysts study service use, health change and payment models alongside reported care hours and tasks.
Why 2026 put this data first
Family care at home grew sharply. Johns Hopkins reports caregivers supporting home and residential-care older adults rose 32% from 18.2 million to 24.1 million during 2011-2022, while weekly hours by dementia caregivers rose nearly 50% from 21.4 to 31.0 hours, in the caregiving trends report. That rise made multi-caregiver families central to policy.
The National Institute on Aging reports more than half of GUIDE-eligible older adults receive care from two or more caregivers. Payment design must therefore fit teams, not one primary caregiver. NIA scheduled a March 17-19, 2026 Dementia Care Summit session on NHATS-NSOC insight, survey-Medicare linkage and GUIDE-model research. The goal is practical measures that payment and support programs can use.
Who gets counted — and who does not
NHATS uses a conservative rule for probable dementia. HHS ASPE and RTI International describe it as combining reported diagnosis, AD8 proxy screening, and tests of memory, orientation and executive function. It leaves out possible dementia and mild impairment, so counts run lower than broader definitions. NSOC also has sharp coverage edges.
NHATS Technical Paper 53 states that NSOC omits caregivers of nursing-home residents and, in trend estimates, caregivers of deceased sample persons, as detailed in the methods paper. National estimates therefore describe community and non-nursing residential-care caregiving only. NSOC does not label dementia caregivers directly. A JMIR Aging analysis notes researchers must link restricted NSOC records to NHATS recipient records by anonymous ID. That step needs restricted-data access and extra linkage work.
How to read the numbers for your family
Treat a national hour or caregiver count as a community-care signal, not a full-care picture. If your relative lives in a nursing home, has mild impairment, or died during the study window, their care may fall outside the trend.
Use the team finding in care planning. List each helper, their weekly hours and the tasks only they can do, then ask the clinic or care program how it records and supports all helpers.
- Check the setting: home and residential care counts; nursing-home care does not.
- Check the definition: probable dementia only; possible dementia and mild impairment do not.
- Check the team: expect two or more helpers for complex dementia care.
- Check the task list: self-care, mobility, household, transportation and medical help.
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