1. BRFSS and Caregiver Advocacy Katie Maslow Alzheimer’s Association March 18, 2009

2. What is BRFSS Behavioral Risk Factors Surveillance System – Telephone survey of a large, representative sample of state residents age 18 and older – Conducted every year in every state – Intended to gather information about health (heart disease, diabetes, etc.) and health-related behaviors (exercise, diet, smoking, etc.) – Funded by states with support from CDC (U.S. Centers for Disease Control and Prevention)

3. BRFSS Questions about Caregiving In 2009, everyone who responds to the BRFSS survey in their state will be asked: “People may provide regular care or assistance to “People 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 friend did 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 question for every state

4. BRFSS Questions about Caregiving (cont.) For 2009 and ongoing, there is an approved, optional state module with 9 more questions about caregiving Age, gender, and caregiver relationship to the person Age, gender, and caregiver relationship to the person Days/weeks/years of caregiving Days/weeks/years of caregiving Type and amount of care provided Type and amount of care provided Physical, mental, and cognitive diseases/conditions of Physical, mental, and cognitive diseases/conditions of the person the person Greatest difficulties faced by the caregiver Greatest difficulties faced by the caregiver

5. Why is this Important for Caregiver Advocates? If we count it, it’s ‘more real’ Policy-makers respond to numbers Policy-makers respond to numbers Media (TV, radio, newspapers) like to have numbers – they might only do a story about caregiving if they have numbers Media (TV, radio, newspapers) like to have numbers – they might only do a story about caregiving if they have numbers Administrators and program planners need numbers to back up the need for programs Administrators and program planners need numbers to back up the need for programs Foundations want numbers in grant proposals Foundations want numbers in grant proposals

6. BRFSS will Provide State-Level Information about Caregiving We have no other source for this information State-level information is compelling for state legislators, media, administrators and program planners State-level information is compelling for state legislators, media, administrators and program planners The information reflects the reality of caregiving for their constituents, audience, and the people who will use their programs The information reflects the reality of caregiving for their constituents, audience, and the people who will use their programs State (and sometimes county and local-level information) is more accurate than national information for that state; it should help to make programs more relevant to the real needs of caregivers in that state State (and sometimes county and local-level information) is more accurate than national information for that state; it should help to make programs more relevant to the real needs of caregivers in that state

7. How Can We Get States to Use the Optional module on Caregiving? Some states are already using the optional module in 2009 Some states are already using the optional module in 2009 For 2010: For 2010: – Contact your state BRFSS coordinator www2.cdc.gov/nccdphp/brfss2/coordinator.asp www2.cdc.gov/nccdphp/brfss2/coordinator.asp – Advocate for including the optional module in 2010 – Explain why the information is essential – Seek legislative support – mandates and funding – Work will all caregiver advocates in your state

8. Combining the Caregiving and Other BRFSS Information Since caregivers will be identified in the BRFSS, information is available not only about responses to the caregiving questions, but also about caregiver responses to all other BRFSS questions: types of caregivers (e.g., veterans, and caregivers types of caregivers (e.g., veterans, and caregivers taking care of veterans) taking care of veterans) caregiver health, illnesses, disability, exercise, diet caregiver health, illnesses, disability, exercise, diet caregiver income, race/ethnicity caregiver income, race/ethnicity We need to plan and budget for a full analysis Full reports on 2007 Caregiving reports for Kansas and Hawaii are at http://fodh.phhp.ufl.edu/publications