Behavioral Risk Factor Surveillance System (BRFSS) Caregiver Module

Caregivers providing regular care or assistance to family or friends with a chronic illness or disability are a paramount public health concern and a critical element of long-term services and supports in the US.

The Healthy Brain Initiative’s Public Health Road Map series identifies the BRFSS Caregiver module as an essential tool for collecting public health data on caregivers. These data can aid in developing 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. 

The original BRFSS Caregiver Module was developed using input from an expert panel of caregiving researchers and stakeholders. It was pilot-tested in North Carolina in 2005 and 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 from 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, some questions were reworded, and several response categories were simplified. The module was revised in 2015 to include nine items.

The module was updated for the 2015 BRFSS to reduce questions from 10 to 9 and to improve and refine 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 if a caregiver assists with personal care needs, household needs, or both, and the type of service most needed by caregivers (unmet need). 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 option to describe the caregiver’s relationship with the person receiving care.

In 2019, a question about unmet caregiver needs was removed from the Caregiver module. Another question was added to assess whether caregivers care for persons with Alzheimer’s disease or other dementias or forms of cognitive impairment. This question helps researchers better determine the number of caregivers providing 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 or older who self-report being a caregiver to a person with a health problem or disability.
• Relationship between the caregiver and the care recipient.
• Main health problem or disability of the care recipient.
• Caregiver assistance with household tasks.
• Caregiver assistance with personal care 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 and expect to be caregivers in the next 2 years.

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

View the 2019 version of the 9-item BRFSS Caregiver module [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 are a caregiver (respondent-level data can be linked to other BRFSS measures such as health insurance and chronic conditions).
• The intensity and duration of care provided 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.

Caregivers provide an important function by providing care for a person that might otherwise receive care 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 at risk for poorer health outcomes by ignoring their own health in order to care for others.

States administering the current Caregiver module varies by year. Information regarding states that administered the Caregiver module by year are available on the BRFSS website and corresponding infographics are available here.

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 or family caregivers—those who are not professional caregivers providing care as a part of their occupation.

It is important to remember that the BRFSS is used to survey community-dwelling adults and does not include residents of long-term care homes, group homes, or other congregate facilities. In addition, if the selected respondent is unable to respond to the survey because of physical or cognitive limitation, that respondent and their entire household are removed from the sample.

CDC publishes various research papers using data from the BRFSS Caregiver Optional module data. A list of these and other papers can be found here.

Since 2015, CDC, in collaboration with the Alzheimer’s Association, developed a series of state-specific infographic for each year that a state collects BRFSS data using the Caregiver module. Infographics presenting combined national data overall and by various demographic groups are also available. These infographics are available. Data can also be queried using the Alzheimer’s Disease and Healthy Aging Data Portal and a series data briefs for action are available on select topics.

It is recommended that researchers unfamiliar 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. This statistical brief [PDF – 4 MB] provides an overview and guidance for analyzing data from the current BRFSS Caregiver Optional Module.