Subjective cognitive decline (SCD) is a person's own report of worsening or more frequent confusion or memory loss over the past year, tracked through a state-run health survey. Public health agencies use it to find where caregiving burden is concentrated and where support services are most needed, and 2026 brought a sharper, if incomplete, picture of both. The data comes from the Behavioral Risk Factor Surveillance System (BRFSS), the CDC's state-based phone survey, through an optional add-on called the Cognitive Decline module. Because states choose whether to run it, coverage is uneven, but where it exists, caregivers show up with measurably higher rates of SCD than people who are not caregiving — a gap with direct implications for how local health departments plan outreach.
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 national numbers actually show
- Why the module only covers some states
- What the newest analysis links together
- What's available to request or compare locally
- Where the data collection is headed
- Frequently Asked Questions
What the national numbers actually show
A CDC report published Nov. 19, 2021 in the Morbidity and Mortality Weekly Report found that 12.6% of unpaid caregivers aged 45 and older who had provided care in the past 30 days reported subjective cognitive decline, compared with 10.2% of people who were not caregivers, a statistically significant gap drawn from 2015–2019 BRFSS data across 22 states. That two-and-a-half point difference is the clearest national signal that the demands of caregiving track alongside the caregiver's own cognitive complaints. The same report found that caregivers reporting SCD differed from noncaregivers reporting SCD in a specific way: they were more likely to be employed, male, aged 45 to 64, and living with chronic health conditions, according to the CDC's Nov.
19, 2021 report. That profile matters for local planning — it points toward working-age caregivers juggling a job, their own health conditions, and care responsibilities, not only retirees caring for a spouse. A separate CDC fact sheet built on 2019–2020 BRFSS data put the broader benchmark at roughly 1 in 10 US adults aged 45 and older experiencing subjective cognitive decline, a figure state health departments still cite as a baseline against which caregiver rates are compared. Against that backdrop, the caregiver rate of 12.6% is not just higher than noncaregivers — it sits above the general adult benchmark as well.
Why the module only covers some states
The Cognitive Decline module is six questions long, and the Alzheimer's Association describes it as the only source of state-specific data on self-reported cognitive health in the country, because individual states decide whether to administer it at all. A state that has never run the module has no SCD data to report, regardless of how large its caregiving population is. That opt-in design creates real gaps. The CDC's Healthy Aging Data site compiles state-level findings on SCD and caregiving for survey years 2019 through 2024, but 2023 data is not available, which breaks the year-over-year comparison a local health department would want when tracking a trend rather than a single snapshot.
A county or state agency building a caregiver support plan around this data should check which years its own state actually fielded the module before assuming a continuous trend line exists. A 2026 analysis from the University of Michigan's Center for Advancing Policy and Research on Aging (CAPRA) ran into the same limitation. The brief excluded Massachusetts, Montana, New Jersey, and Washington, D.C. from its state comparisons entirely, because those jurisdictions administered the cognitive decline or caregiver modules inconsistently between 2019 and 2022. A caregiver in any of those four places looking for a state-specific comparison point will not find one in this dataset.
What the newest analysis links together
The same CAPRA brief, published in August 2026 using 2019–2022 BRFSS data, found that states with higher subjective cognitive decline prevalence among adults 45 and older also tended to report higher rates of dementia-related caregiving burden. That pairing gives local agencies a second variable to watch alongside SCD prevalence alone: a state or county showing elevated SCD numbers is a reasonable candidate for also carrying a heavier caregiving load, even before a separate caregiver-specific survey confirms it.
This matters for how a county health department prioritizes limited respite-care funding or caregiver-training programs. A jurisdiction that only tracks SCD prevalence, without also looking at caregiving burden, may undercount where the practical strain on families is actually concentrated.
What's available to request or compare locally
Family caregivers and local advocates who want to act on this data have a few concrete entry points rather than a single number to check. These steps turn a dataset built for epidemiologists into something a caregiver coalition or county aging office can actually bring to a funding conversation.
- Ask the state health department whether it has run the BRFSS Cognitive Decline and Caregiver module, and for which years — coverage is not universal and not continuous.
- Request the refreshed dataset directly: the nationally representative 2019–2022 BRFSS Cognitive Decline and Caregiver module file was updated to version 2 on openICPSR in May 2026, giving local planners a current file for state- and county-level work.
- Compare any local figure against the roughly 1-in-10 national benchmark for adults 45 and older, and against the 12.6%-versus-10.2% caregiver gap, rather than treating a single local number in isolation.
- Check whether the state was one of the four CAPRA excluded for inconsistent module administration before relying on a cross-state ranking.
Where the data collection is headed
Federal attention to this specific gap is active, not static. CDC's fiscal year 2026 funding notice, CDC-RFA-DP-26-0227, directs its National Healthy Brain Initiative to revise the BRFSS subjective cognitive decline and caregiver modules, and the same notice named the Alzheimer's Association a BOLD Public Health Center of Excellence for dementia risk reduction, with roughly $3.3 million committed over five years.
A family caregiver advocating for better local data has a live federal process to point to, not just a request into a static system. A state currently missing from the module, or one whose data CAPRA had to exclude, is the kind of gap this revision is positioned to address. Local caregiver groups that raise the issue with state health departments now are raising it while the module itself is being rebuilt.
Frequently Asked Questions
Why doesn't my state show up in subjective cognitive decline comparisons?
States choose whether to run the BRFSS Cognitive Decline module, so a state that has never administered it has no data to compare, and four jurisdictions — Massachusetts, Montana, New Jersey, and Washington, D.C. — were excluded from a 2026 University of Michigan CAPRA analysis specifically because their 2019–2022 administration was inconsistent.
Is there a more current dataset than the 2019–2020 figures most fact sheets cite?
Yes — the BRFSS Cognitive Decline and Caregiver module covering 2019–2022 was updated to version 2 on openICPSR in May 2026, giving local health departments a refreshed file for planning.
Does higher subjective cognitive decline in a state mean caregivers there are more burdened?
The 2026 CAPRA brief found states with higher SCD prevalence among adults 45 and older also tended to report higher dementia-related caregiving burden, though the brief's own state exclusions mean this pattern doesn't cover every state.
You Might Also Like
- Serious Illness and End-of-Life Dementia Research Priorities in 2026: Questions Family Caregivers Can Ask Local Care Programs
- Maine’s 2026 ECHO Training for Dementia Risk Reduction: Local Action Questions for Family Caregivers
- Privacy and Data Access Gaps in 2026 Dementia Research: Study Design and Evidence Limits for Family Caregivers
