Behavioral Risk Factor Surveillance System (BRFSS) Caregiver Module

Frequently Asked Questions

Informal or unpaid caregiving, which is providing regular care or assistance to family and friends with chronic illnesses or disability conditions, is an important public health issue and is a critical element of long-term services and supports in the US.1,2

The Healthy Brain Initiative: State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road MapCdc-pdf , focuses on the BRFSS Caregiver module as an important tool for collecting public health data on caregivers.3 These data can aid in the development of appropriate strategies and policies to assure the health and well-being of caregivers. Identifying caregivers and assessing their stresses and needs can help maintain caregiver health and the health of the person receiving care and postpone costly alternatives such as placement in long-term care facilities.4

The original BRFSS Caregiver Module was developed with input from an expert panel of caregiving researchers and stakeholders. It was pilot-tested in North Carolina in 2005 and then underwent revisions based on responses and a follow-back survey. The 10-item module was cognitively tested and was included as an optional module on the BRFSS in 2009–2012.

Beginning in 2013, the CDC’s Healthy Aging Program worked with an expert panel including BRFSS coordinators and caregiving researchers to revise the module. In 2014, three new rounds of cognitive testing were completed. As a result, slight modifications were made to the wording of the questions and several response categories were simplified. The module was revised in 2015 to include 9 items.

The module was updated for the 2015 BRFSS to reduce the number of questions from 10 to 9 and to improve and refine the content. Several response categories were simplified, including the care recipient’s health problem, the duration of caregiving, and the hours of care per week. Three questions were added to assess whether the caregiver assists with personal care needs or with household needs, and the type of service most needed by caregivers (unmet need). Additionally, a question was added for respondents who currently do not provide care or assistance, inquiring about their expectations to provide care in the future.

In 2016, the category of “unmarried partner” was added to provide an additional option to describe the caregiver’s relationship to the person receiving care.

In 2019, a question about unmet caregiver needs was removed from the Caregiver module. An additional question was added to assess whether caregivers provide care for persons with Alzheimer’s disease or other dementias or forms of cognitive impairment. This will allow researchers to better determine the number of caregivers who provide care to persons with cognitive impairment.

The revised 9-item module allows states to understand multiple aspects of the caregiver-care recipient relationship, including:

  • Percentage of adults 18 years of older who self-report as being a caregiver to a person with a health problem or disability
  • Relationship between the caregiver and the care recipient
  • Health problem or disability of the care recipient
  • If the caregiver assists with household tasks
  • If the caregiver assists with personal tasks
  • Average hours of caregiving provided per week
  • Length of time as a caregiver
  • Type of assistance most needed by the caregiver that they do not receive (question included for years 2015–2018)
  • If the care recipient has Alzheimer’s disease or another dementia in addition to another health problem or disability (question added in 2019)
  • Percentage of adults aged 18 years or older who are not caregivers who expect to be caregivers in the next 2 years

View the 2015 version of the 9-item BRFSS Caregiver module Cdc-pdf[PDF – 129 KB]

View the 2019 version of the 9-item BRFSS Caregiver module Cdc-pdf[PDF – 115 KB]

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

  • Percentage of adults who have been a caregiver in the past 30 days.
  • Health conditions and behaviors of adults who have been a caregiver (respondent-level data can be linked to other BRFSS measures such as health insurance and chronic conditions).
  • The length and intensity of work by caregivers defined by the average number of weekly caregiving hours and length of time that they have been providing care.
  • The number of persons who are not currently caregivers but who expect to be caregivers in the next 2 years
  • Relationship to other behavioral health factors from the BRFSS core or co-administered optional modules.

Caregivers provide a very important function by providing care for a person that might otherwise have to be provided in another setting, like a long-term care facility or nursing home. While there are benefits to caregiving, caregiving can also be stressful, tiring, and can have economic consequences for the caregiver. Caregivers can also be more at risk for poorer health outcomes by ignoring their own health in order to care for others.5

For 2015–2017, a total of 44 states plus the District of Columbia and Puerto Rico have administered the Caregiver module at least once.

  • In 2015, 24 states administered the Caregiver module: Alabama, Florida, Hawaii, Idaho, Illinois, Indiana, Iowa, Kentucky, Louisiana, Maine, Maryland, Mississippi, Nebraska, New Jersey, New York, Oregon, Pennsylvania, South Carolina, Tennessee, Utah, Virginia, West Virginia, Wisconsin, and Wyoming.
  • In 2016, 21 states and territories administered the Caregiver module: Arizona, Arkansas, California, Colorado, Connecticut, District of Columbia, Georgia, Minnesota, Missouri, Montana, Nevada, New Jersey, New York, North Dakota, Ohio, Oregon, Puerto Rico, South Dakota, Tennessee, Texas, and Utah.
  • In 2017, 12 states administered the Caregiver module: Alaska, Hawaii, Kansas, Maryland, Michigan, New Jersey, New York, New Mexico, Oklahoma, Oregon, Rhode Island, and Utah.

Prior to 2015, some states might have administered previous version of the Caregiver module, including some states who administered the module in a modified form as state-added questions. 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.

The module captures a broad range of caregivers, including those who provide care for only a few hours per week and those who are not the primary caregiver. It is intended to collect data on informal caregivers—those who are not paid professionals who provide care as a part of their occupation. 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.

Since 2015, CDC has developed a state-specific infographic for each year that a state collects BRFSS data using the Caregiver module. An infographic presenting combined national data 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.

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 (www.cdc.gov/brfss). An Analytical Guidance document is available by contacting your state BRFSS coordinator or the Healthy Aging Program for more information.

References

  1. Talley RC, Crews JE. Framing the public health of caregiving. American Journal of Public Health 2007;97:224-228.
  2. Olivari BS, Baumgart M, Lock SL, et al. CDC Grand Rounds: Promoting Well-Being and Independence in Older Adults. MMWR Morb Mortal Wkly Rep 2018;67:1036–1039. DOI: http://dx.doi.org/10.15585/mmwr.mm6737a4External.
  3. 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.
  4. AARP Public Policy Institute. Listening to family caregivers: the need to include family caregiver assessment in Medicaid home- and community-based service waiver programs. Washington, DC: AARP; 2013. https://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/the-need-to-include-family-caregiver-assessment-medicaid-hcbs-waiver-programs-report-AARP-ppi-ltc.pdfCdc-pdfExternal
  5. National Alliance for Caregiving (US); AARP Public Policy Institute. Caregiving in the U.S. 2015 – Final Report. Available from: http://www.caregiving.org/caregiving2015/