Behavioral Risk Factor Surveillance System (BRFSS) Cognitive Decline Module

Frequently Asked Questions

In 2007, the CDC Healthy Aging Program—in collaboration with national experts—developed a 10-question Behavioral Risk Factor Surveillance System (BRFSS) module to measure subjective cognitive decline (SCD) and its associated effects. CDC developed these survey questions because of the importance of cognitive impairment as a public health issue, and the recommendation to develop population-based surveillance in The Healthy Brain Initiative: A National Public Health Road Map to Maintaining Cognitive Health Cdc-pdf[PDF – 3 MB], the first document in the public health Road Map series. CDC consulted with a national panel of experts to develop the items.

CDC selected the BRFSS because of its long history helping states survey US adults about a wide range of behaviors that affect their health. The primary focus of the BRFSS are behaviors and conditions that are associated with the leading causes of death—heart disease, cancer, stroke, accidents, Alzheimer’s disease, and diabetes—and other important health issues.

In 2016, the CDC Healthy Aging Program became the CDC Alzheimer’s Disease and Healthy Aging Program. The Program’s focus on brain health ensures that the collection of data on cognitive decline continues to be a public health priority. As a result, the most recent update to the public health Road Map series,  The Healthy Brain Initiative: State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map Cdc-pdf[PDF – 2 MB], contains several actions that focus on data collected from the BRFSS Cognitive Decline module.1

A multi step process was used to develop the questions for the module. A scientific literature review was conducted to identify existing surveys and questions that measure cognitive decline and impairment (http://www.ncbi.nlm.nih.gov/pubmed/19525214External). Next, a panel of subject matter experts reviewed questions used on other surveys, adapted existing questions, and developed a set of possible questions for the module. The module was finalized after four rounds of cognitive testing and field testing in California’s BRFSS survey during Fall 2008. In 2009, five states (California, Florida, Iowa, Louisiana, and Michigan) pilot-tested the module in their BRFSS surveys.

From 2011–2013, a total of 47 states and territories added the Cognitive Impairment module (as it was then called) as an official optional module in 2011 and as state-added questions in 2012 and 2013. CDC consulted with data users and convened a panel to revise the module based on feedback. The revised 2015 Cognitive Decline module underwent two rounds of cognitive testing before it was finalized and approved by BRFSS coordinators to be included as an official optional module in the 2015 BRFSS.

The BRFSS 2015 Cognitive Decline module includes the following revisions based on feedback from data users:

  • The module is shortened from 10 to 6 questions, on the basis of feedback to shorten the module.
  • The module is asked to BRFSS respondents aged 45 years or older. Data indicates that this age group is more likely to answer “yes” to the index question than those younger than 44 years or younger.
  • The name of the module is changed to the Cognitive Decline module to better reflect the measure.
  • The introductory text is edited to provide greater clarity based on feedback from the cognitive testing.

The questions measure the BRFSS respondents’ perceptions about any confusion or memory loss that is happening more often or is getting worse:

  • During the past 12 months, have you experienced confusion or memory loss that is happening more often or is getting worse?

This captures symptoms of cognitive decline that are more frequent or worse over time. If a respondent answers “yes” to this question, other questions from the module are asked to help understand whether subjective cognitive decline (SCD) affects functioning:

  • During the past 12 months, as a result of confusion or memory loss, how often have you given up day-to-day household activities or chores you used to do, such as cooking, cleaning, taking medications, driving, or paying bills?
  • As a result of confusion or memory loss, how often do you need assistance with these day-to-day activities?
  • When you need help with these day-to-day activities, how often are you able to get the help that you need?
  • During the past 12 months, how often has confusion or memory loss interfered with your ability to work, volunteer, or engage in social activities outside the home?
  • Have you or anyone else discussed your confusion or memory loss with a health care professional?

These questions address how often SCD causes individuals to give up household chores or activities outside the home, whether they need assistance and can get the help they need, and whether anyone has discussed SCD with a health care professional.

Because the questions are not trying to measure whether the person has a medical condition or diagnosis, we encourage that the measure be referred to as subjective cognitive decline (SCD) because it is a self-reported (subjective) measure.

The module can provide the following state-level data leading to valuable insights:

  • Percentage of adults aged 45 years or older who experience subjective cognitive decline (SCD).
  • Percentage of adults aged 45 years or older who experience difficulties with daily activities due to SCD.
  • Health conditions and behaviors of adults aged 45 years or older experiencing SCD (respondent-level data can be linked to other BRFSS measures such as health insurance and chronic conditions).
  • Percentage of adults aged 45 years or older who experience SCD and live alone.
  • Reported need for assistance with activities due to SCD and whether individuals receive the help they need.
  • Relationship to other behavioral health factors from the BRFSS core or co-administered optional modules.

Declines in cognitive function vary among people and can include changes in attention, memory, learning, executive function (the ability to perform activities such as planning, organizing, paying attention, and remembering details), activities of daily living, and language capabilities that negatively affect quality of life, personal relationships, and the capacity for making informed decisions about health care and other matters.2 Memory problems are typically one of the first warning signs of cognitive decline, possibly because of the development of Alzheimer’s disease or a related dementia.3 Some causes of cognitive decline are reversible (i.e., depression, infections, medication side effects, nutritional deficiencies), but they can be serious and should be treated by a health care provider as soon as possible.2

There is increased attention and greater public health awareness about Alzheimer’s disease and related disorders.3 States and communities need to know about such conditions for medical and personal planning. They can have devastating effects on individuals and societies, including increased health care and long-term care needs as well as major caregiving and financial challenges.

For 2015–2016, a total of 49 states, the District of Columbia, and Puerto Rico have administered the most recent version of the Cognitive Decline module at least once. A report on the prevalence of SCD in these states is available (https://www.cdc.gov/mmwr/volumes/67/wr/mm6727a1.htm). Since 2016, states continue to administer this module to BRFSS respondents.

Several states administered the previous version of the module Cdc-pdf[PDF – 46 KB] from 2009-2014.

  • In 2009, the following 5 states pilot tested the module: Florida, Louisiana, Michigan, California, and Iowa.
  • In 2011, the following 21 states included the module as an official optional module: Arkansas, California, Florida, Hawaii, Illinois, Iowa, Louisiana, Maryland, Michigan, Nebraska, New Hampshire, New York, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Utah, Washington, West Virginia, and Wisconsin. Georgia added the module as state-added questions.
  • In 2012, the following 24 states or territories included the module as state-added questions: Alabama, Arizona, Arkansas, California, Connecticut, District of Columbia, Georgia, Indiana, Iowa, Kentucky, Louisiana, Maine, Maryland, Mississippi, Missouri, Nevada, New Jersey, North Dakota, Ohio, Oregon, Virginia, West Virginia, Wisconsin, and Wyoming.
  • In 2013, the following 20 states or territories added the module as state-added questions: Alaska, Arizona, Arkansas, Georgia, Idaho, Illinois, Indiana, Kansas, Massachusetts, Michigan, Minnesota, Nevada, New Mexico, New York, Oregon, Puerto Rico, South Dakota, Texas, Vermont, Virginia.
  • In 2014, Pennsylvania included the module as a state-added question.

Because state-added questions are not funded by the CDC and are not part of the official BRFSS questionnaire, they are not included as part of the standard data set released to the public by CDC. Persons interested in state-added questions can contact the BRFSS State Coordinators (https://www.cdc.gov/brfss/state_info/coordinators.htm) for a specific state.

It is important to understand that any measure of increased confusion or memory loss, or ICML, obtained from the BRFSS is meant for public health purposes to help describe the problems associated with ICML in states and communities. Thus, it is not appropriate to compare with other measures of cognitive decline or cognitive impairment.

Because questions are self-reported and not designed to assess whether or not the person has a medical condition or a medical diagnosis, the data are not intended to be reported as a prevalence measure of a medical condition.

It is important to remember that the BRFSS is used to survey households and does not include residents of nursing homes, group homes, or other facilities. In addition, if the selected respondent is unable to respond to the survey because of physical or mental problems, the entire household is removed from the sample. Thus, respondents who complete the survey have been deemed by themselves or another household member to be mentally fit to respond to the survey.

A report was published in the Morbidity and Mortality Weekly Report (MMWR) in 2018 describing the prevalence of subjective cognitive decline (SCD) across all participating states for 2015–2016. This report can be found at https://www.cdc.gov/mmwr/volumes/67/wr/mm6727a1.htm.

Since 2015, CDC, in cooperation with the Alzheimer’s Association, has developed a state-specific infographic for each year that a state collects BRFSS data using the Cognitive Decline module. An infographic presenting combined national data for 2015–2016 is also available. These infographics are available at https://www.cdc.gov/aging/data/index.htm. Data can also be queried using the Healthy Aging Data Portal. Additional fact sheets developed by the Alzheimer’s Association can be found at https://www.alz.org/professionals/public-health/issues/data-and-needs-assessmentExternal.

It is recommended that researchers not familiar with BRFSS data analyses become familiar with the methods unique to BRFSS, including weighting and raking methods. More information can be found at CDC’s BRFSS site. An Analytical Guidance document is available by contacting your state BRFSS coordinator or the Healthy Aging Program for more information.

References

  1. Alzheimer’s Association and Centers for Disease Control and Prevention. Healthy Brain Initiative, State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map. Chicago, IL: Alzheimer’s Association; 2018.
  2. Wagster MV, King JW, Resnick SM, Rapp PR. The 87% guest editorial. J Gerontol A Biol Sci Med Sci. 2012;67(7):739-740.
  3. National Institute on Aging. Alzheimer’s Disease Fact Sheet. Bethesda, MD: National Institutes of Health, US Dept of Health and Human Services; 2013. http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-fact-sheetExternal. Accessed October 16, 2014. Top of Page