Variation Across US States in Subjective Cognitive Decline and Dementia-Related Caregiving: Behavioral Risk Factor Surveillance System (BRFSS)

Subjective cognitive decline—self-reported worsening of confusion or memory—is an important public health indicator because it may affect daily functioning, independence, and the need for support. Although subjective cognitive decline is not equivalent to a clinical diagnosis of Alzheimer’s disease or related dementias, it can help identify populations experiencing cognitive concerns and inform public health planning.

BRFSS data reveal meaningful state-to-state differences in both cognitive decline and dementia-related caregiving.

Informal caregivers provide essential support to many individuals living with dementia or cognitive impairment. However, the availability of informal caregiving may not align geographically with the population experiencing subjective cognitive decline. Few studies have examined state-level variation in subjective cognitive decline and dementia-related caregiving across the US, in part because large, publicly available datasets with comparable state-level measures are limited.

Here we used nationally representative data to generate estimates of the population of adults living with self-reported confusion or memory loss and informal caregivers to someone with dementia across US states. The Behavioral Risk Factor Surveillance System (BRFSS) collects state-specific data pertaining to health risk behaviors, chronic conditions, preventative health services, and health care accessibility. We used BRFSS data to estimate state-level variation in the size of the self-reported subjective cognitive decline and dementia-related caregiving populations, and the association between the two.

States with higher levels of subjective cognitive decline also tended to have higher levels of dementia-related caregiving.

We conducted a cross-sectional analysis using BRFSS data from 2019–2022 to examine the relationship between subjective cognitive decline and dementia-related caregiving across US states. It’s important to note that not all BRFSS modules are available for every state, every year. Hence, collecting data from 2019–2022 allowed for a uniform dataset to be constructed for all US states, excluding Massachusetts, Montana, New Jersey, and the District of Columbia. Subjective cognitive decline was measured as the weighted percentage of adult respondents age 45 and older who reported confusion or memory loss that was happening more often or getting worse during the previous 12 months. Dementia-related caregiving was measured as a percentage of all adults aged 18+ who identified as caring for someone with Alzheimer’s disease, dementia, or another cognitive impairment disorder.

To account for differences in age and sex across states, both measures were adjusted using direct rate adjustment to the estimated 2022 U.S. population from the American Community Survey. For visualization, both measures were collapsed into quintiles and used Pearson correlation to estimate the association between state-level subjective cognitive decline and dementia-related caregiving.

Combining cognitive decline and caregiving measures provides a more complete picture of dementia-related needs across the United States.