1. 11 Healthy Aging Program Division of Population Health National Center for Chronic Disease Prevention and Health Promotion BRFSS Data Users’ Webinar September 9, 2014 Caregiver Health and Activities: The BRFSS Caregiver Module

2. 22 Presenters Lynda A. Anderson, PhD Director, Healthy Aging Program Centers for Disease Control and Prevention Erin Bouldin, MPH Research anager, VA HSR&D Seattle Valerie Edwards, PhD Health Scientist, Healthy Aging Program Centers for Disease Control and Prevention

3. 3 Caregiving Significance and Interventions Lynda Anderson, PhD

4. 4 3 million 35 million 72 million 4.2 million 9 million Population ≥65 and ≥85 Years Old United States, 1900─2010 and Projected 2020─2050 Federal Interagency Forum on Aging-Related Statistics. Older Americans 2012: Key Indicators of Well-being, select data from Table 1a Available at www.agingstats.gov/agingstatsdotnet/Main_Site/Data/2012_Documents/docs/EntireChartbook.pdf ≥65 years old ≥85 years old

5. 5 Significance of Caregiving 85% of baby boomers desire to “age in place”* 4.6 years is the average length of time for caregiving in home settings, and for persons living with dementia may range from 4-20 years 25% of adults aged 18+ reported providing care or assistance to person with long-term illness or disabilities in past 30 days (2009 BRFSS)** People willingly provide support but caregiving activities put people at increased risk for injury, mental health problems, and economic insecurity 5 * Yen, et al. (2014). How Design of Places Promotes or Inhibits Mobility of Older Adults: Realist Synthesis of 20 Years of Research. Journal of Aging and Health. published online 30 April 2014doi:10.1177/0898264314527610 **Anderson et al. (2013). Adult Caregivers in the United States: Characteristics and Differences in Well-being, by Caregiver Age and Caregiving Status. Preventing Chronic Disease,10:130090. DOI: http://dx.doi.org/10.5888/pcd10.130090.

6. 6 “There are four kinds of people in the world: Those who have been caregivers; Those who currently are caregivers; Those who will be caregivers; and Those who will need caregivers.” Rosalynn Carter Former First Lady and Chair of the Rosalynn Carter Institute on Caregiving

7. 7 The Healthy Brain Initiative: A National Public Health Road Map to Maintaining Cognitive Health Five-year guide for public health practitioners in U.S. (2007) Actions related to: Surveillance Applied research Policy Communications Progress report of CDC’s accomplishments (2011) www.cdc.gov/aging

8. Healthy People 2020 Older Adults: Objective OA-9 Reduce the proportion of unpaid caregivers of older adults who report an unmet need for caregiver support services (Developmental) Disability and Health: Objective DH-2.2 Increase the number of state and DC health departments that conduct health surveillance of caregivers for people with disabilities.

9. 99 National Recognition for Caregiving 2014 National Plan to Address Alzheimer's Disease Several strategic actions that focus on caregivers The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013 – 2018 5 action items focus on caregiving

10. 10 2013 Healthy Brain Initiative Road Map Actions for state and local public health agencies and their partners to: Promote cognitive functioning, Address cognitive impairment for individuals living in the community, and Help meet the needs of care partners

11. 11 Five Actions* Related to Caregiving M-01 Implement the Behavioral Risk Factor Surveillance System’s cognitive impairment and caregiver modules. M-08 Define the needs of caregivers and persons with dementia, including Alzheimer’s disease and younger onset, as they relate to employment and employers. M-10 Conduct a national-level review of caregiver programs and policies consistent with The Guide to Community Preventive Services methodologies. M-13 Conduct a national-level literature review on the potential and optimal use of technology for delivering best practices in programs for caregivers and persons with dementia, including Alzheimer’s disease. E-03 Encourage public health entities to provide links on their Web sites to local, state, and national dementia resources, including those specific to Alzheimer’s disease and caregiving, such as www.alzheimers.gov. *The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013 – 2018

12. 12 Alzheimer’s Disease Supportive and Caregiver Services Administration for Community Living Administration on Aging National Family Caregiver Support Program www.aoa.gov/AoARoot/AoA_Programs/ HCLTC/Caregiver/ Alzheimer’s Disease Supportive Services www.aoa.gov/AoARoot/AoA_Programs/ HPW/Alz_Grants/index.aspx 12

13. 13 Select Caregiver Support Resources Administration for Community Living/Administration on Aging www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Grants/compendium.aspx#to olkits Centers for Disease Control and Prevention www.cdc.gov/aging Centers for Medicare & Medicaid Services www.medicare.gov/campaigns/caregiver/caregiver.html National Institute on Aging/ National Institutes of Health www.nia.nih.gov/alzheimers/topics/caregiving Veterans Administration www.caregiver.va.gov/support/index.asp#s

14. 14 BRFSS Caregiving Module Development and Application 2005-2014 Erin Bouldin, MPH

15. Use of BRFSS Caregiver Module Pilot NC State- added HI, KS, WA State- added FL, MI, MN, TX Core screen; Optional IL, LA, OH, DC Optional CT, NH, NJ, NY, TN State- added NC, NJ State- added CA, GA, IA, IN, MS, ME, MO OR, WI, WV 2005 2011 2010 20092008 2007 2012

16. 16 Development of Caregiver Module National 2005 stakeholders meeting to establish critical elements in caregiver surveillance Information about care recipients Functional & diagnosis aspects Caregiver health Interviews North Carolina BRFSS May – August 2005 (n=5,859 with 895 caregivers) Follow-back survey 3 months later (n=374) Cognitive Interviews in 2008

17. 17 Case Definition of Caregiver BRFSS screening question: “People may provide regular care or assistance to a friend or family member who has a health problem, long-term illness, or disability. During the past month, did you provide any such care or assistance to a friend or family member?”

18. 18 10-item Caregiver Module* Care recipient age, gender, relationship to caregiver, major health problem/disability Duration of caregiving Hours per week of caregiving Area with which care recipient needs most help Self-care, transportation, seeing/hearing, etc. Greatest difficulty faced by caregiver Change in care recipient’s thinking or memory in past year *2014 or earlier

19. 19 State Use of Caregiving Data

20. 20 BRFSS Core Question 2009 The “screening question” was added as an emerging core question A publication on prevalence is available from the CDC States can examine details of their own populations for the health of caregivers using these data e.g., compare “days mental health was not good” between caregivers & others, look at preventive behaviors, etc.

21. Prevalence of Caregiving, by State and Territory, BRFSS, 2009* *BRFSS core question: “People may provide regular care or assistance to a friend or family member who has a health problem, long-term illness, or disability. During the past month, did you provide any such care or assistance to a friend or family member?”

22. 22 Sample Findings Caregivers tend to have similar health behaviors as non-caregivers Caregivers more frequently have disability themselves than non-caregivers The module captures a broad range of caregivers, both in hours/week and types of care provided In most states, caregivers report stress is the greatest difficulty they face, but not always; many caregivers report “no difficulty”

23. 23 Planning and Programmatic Information Understand the state-level experience & needs of caregivers Wide variation in prevalence of caregiving and impacts of caregiving across states Broad age range of caregivers and care recipients (not just older adults) Measure burden (time, tasks) for caregivers Link to caregiver outcomes, e.g., health, injury

24. 24 Interest in Caregiving Data State offices on caregiving or aging National Family Caregiver Support Program of Administration on Aging Departments of health Chronic disease, aging, disability branches Physicians & health care providers Raising awareness of caregiver needs Policy makers Evidence of need for caregiver support programs

25. 25 Using BRFSS Caregiver Data Reports on specific types of caregivers Caregiver of persons with cognitive impairment (Alzheimer’s disease/dementia) Caregivers who report a financial burden, stress Caregivers who provide full-time care Caregiver policy briefs Alzheimer’s Association Washington, Florida

26. 26 Augmenting Caregiver Module Hawaii Living arrangement, living will, power of attorney, long-term care insurance Kansas Primary caregivers and health outcomes Washington Kinship caregiving, primary caregivers, memory loss, hours per week of ADL assistance, paid caregivers

27. 27 2015 BRFSS Module Highlights Valerie Edwards, PhD

28. 28 Update of 2011 Caregiving Module  Reduce number of questions  8 questions for caregivers  1 new question to estimate prevalence of future caregivers  Improve and refine content This was achieved by:  Feedback from BRFSS coordinators  Professionals in the caregiving field  4 rounds of cognitive testing

29. 29 State Use of Caregiving Data

30. 30 Caregiving Screener During the past 30 days, did you provide regular care or assistance to a friend or family member who has a health problem or disability? Yes/No

31. 31 Forecasting If not a current caregiver: In the next 2 years, do you expect to provide care or assistance to a friend or family member who has a health problem or disability?

32. 32 Relationship What is his/her relationship to you? For example is he/she your (mother/daughter or father/son)?

33. 33 Length of Care For how long have you provided care for that person? Would you say… Less than 30 days 1 month to less than 6 months 6 months to less than 2 years 2 years to less than 5 years More than 5 years

34. 34 In an average week, how many hours do you provide care or assistance? Would you say… Intensity  Up to 8 hours per week  9 to 19 hours per week  20 to 39 hours per week  40 hours or more per week

35. 35 Cause What is the main health problem, long-term illness, or disability that the person you care for has? Broader categories Match co-occurring chronic conditions

36. 36 Caregiving Needs In the past 30 days, did you provide care for this person by… …Managing personal care such as giving medications, feeding, dressing, or bathing? Yes/No …Managing household tasks such as cleaning, managing money, or preparing meals? Yes/No

37. 37 Support Services Needed Of the following support services, which ONE you MOST need, that you are not currently getting?  Classes about caregiving, such as giving medication  Help in getting access to services  Caregiver support groups  Individual counseling to help cope with caregiving  Respite care  No caregiver support services needed

38. 38 Thank you & Acknowledgements Funding and Support Centers for Disease Control & Prevention (NCBDDD; NCCDPHP) Rosalynn Carter Institute for Caregiving Alzheimer’s Association BRFSS Coordinators who have facilitated module use and provided feedback BRFSS Survey Workgroup

39. Questions & Discussion

40. 40 For more information please contact Centers for Disease Control and Prevention 1600 Clifton Road NE, Atlanta, GA 30333 Telephone, 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348 E-mail: cdcinfo@cdc.gov Web: www.cdc.gov The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. Thank you Healthy Aging Program www.cdc.gov/aging