BRFSS and BRFSS and Caregiver AdvocacyCaregiver Advocacy

Katie MaslowKatie Maslow

Alzheimer’s AssociationAlzheimer’s Association

March 18, 2009March 18, 2009

What is BRFSSWhat is BRFSS

Behavioral Risk Factors Surveillance SystemBehavioral Risk Factors Surveillance System

– Telephone survey of a large, representative sample of state Telephone survey of a large, representative sample of state residents age 18 and olderresidents age 18 and older

– Conducted every year in every stateConducted every year in every state

– Intended to gather information about health (heart disease, Intended to gather information about health (heart disease, diabetes, etc.) and health-related behaviors (exercise, diet, diabetes, etc.) and health-related behaviors (exercise, diet, smoking, etc.)smoking, etc.)

– Funded by states with support from CDC (U.S. Centers for Funded by states with support from CDC (U.S. Centers for Disease Control and Prevention)Disease Control and Prevention)

BRFSS Questions about BRFSS Questions about CaregivingCaregiving

In 2009, everyone who responds to the BRFSS In 2009, everyone who responds to the BRFSS survey in their state will be asked:survey in their state will be asked:

““People may provide regular care or assistance toPeople may provide regular care or assistance to

a friend or family member who has a health problem, a friend or family member who has a health problem,

long-term illness, or disability. During the past month, long-term illness, or disability. During the past month,

did you provide any such care or assistance to a frienddid you provide any such care or assistance to a friend

or family member?”or family member?”

By mid-2010, we will know the answer to that By mid-2010, we will know the answer to that question for every statequestion for every state

BRFSS Questions about BRFSS Questions about Caregiving Caregiving (cont.)(cont.)

For 2009 and ongoing, there is an approved, For 2009 and ongoing, there is an approved, optional state module with 9 more questions optional state module with 9 more questions about caregivingabout caregiving

• Age, gender, and caregiver relationship to the personAge, gender, and caregiver relationship to the person

• Days/weeks/years of caregivingDays/weeks/years of caregiving

• Type and amount of care providedType and amount of care provided

• Physical, mental, and cognitive diseases/conditions of Physical, mental, and cognitive diseases/conditions of

the personthe person

• Greatest difficulties faced by the caregiverGreatest difficulties faced by the caregiver

Why is this Important for Why is this Important for Caregiver Advocates?Caregiver Advocates?

If we count it, it’s ‘more real’If we count it, it’s ‘more real’

• Policy-makers respond to numbersPolicy-makers respond to numbers

• Media (TV, radio, newspapers) like to have numbers – they Media (TV, radio, newspapers) like to have numbers – they might only do a story about caregiving if they have numbersmight only do a story about caregiving if they have numbers

• Administrators and program planners need numbers to back Administrators and program planners need numbers to back up the need for programsup the need for programs

• Foundations want numbers in grant proposalsFoundations want numbers in grant proposals

BRFSS will Provide State-BRFSS will Provide State-Level Information about Level Information about

CaregivingCaregiving

We have no other source for this informationWe have no other source for this information

• State-level information is compelling for state legislators, State-level information is compelling for state legislators, media, administrators and program plannersmedia, administrators and program planners

• The information reflects the reality of caregiving for their The information reflects the reality of caregiving for their constituents, audience, and the people who will use their constituents, audience, and the people who will use their programsprograms

• State (and sometimes county and local-level information) is State (and sometimes county and local-level information) is more accurate than national information for that state; it more accurate than national information for that state; it should help to make programs more relevant to the real should help to make programs more relevant to the real needs of caregivers in that state needs of caregivers in that state

How Can We Get States to How Can We Get States to Use the Optional module on Use the Optional module on

Caregiving?Caregiving? Some states are already using the optional module Some states are already using the optional module

in 2009in 2009

For 2010:For 2010:– Contact your state BRFSS coordinatorContact your state BRFSS coordinator www2.www2.cdccdc..govgov//nccdnccdphp/brfss2/php/brfss2/coordinatorcoordinator..aspasp

– Advocate for including the optional module in 2010Advocate for including the optional module in 2010

– Explain why the information is essentialExplain why the information is essential

– Seek legislative support – mandates and fundingSeek legislative support – mandates and funding

– Work will all caregiver advocates in your stateWork will all caregiver advocates in your state

Combining the Caregiving Combining the Caregiving and Other BRFSS and Other BRFSS

InformationInformation Since caregivers will be identified in the BRFSS, information is Since caregivers will be identified in the BRFSS, information is available not only about responses to the caregiving questions, available not only about responses to the caregiving questions, but also about caregiver responses to all other BRFSS questions:but also about caregiver responses to all other BRFSS questions:

• types of caregivers (e.g., veterans, and caregiverstypes of caregivers (e.g., veterans, and caregivers

taking care of veterans)taking care of veterans)• caregiver health, illnesses, disability, exercise, dietcaregiver health, illnesses, disability, exercise, diet• caregiver income, race/ethnicitycaregiver income, race/ethnicity

We need to plan and budget for a full analysisWe need to plan and budget for a full analysis

Full reports on 2007 Caregiving reports for Kansas and Hawaii are at Full reports on 2007 Caregiving reports for Kansas and Hawaii are at http://fodh.phhp.ufl.edu/publicationshttp://fodh.phhp.ufl.edu/publications