Healthy Brain Initiative: Addressing Confusion, Memory Loss and Care Partner Needs in Illinois

Transcription

1 Healthy Brain Initiative: Addressing Confusion, Memory Loss and Care Partner Needs in Illinois Presenters: Rhonda Clancy, MS, Project Coordinator, Healthy Brain Initiative Illinois Department of Public Health Nora Kelly, MPH, Data & Surveillance Team Illinois Department of Public Health Albert Botchway, PhD, Research Associate, Center for Clinical Research Southern Illinois University, School of Medicine Laurie Call, BA, Director, Center for Community Capacity Development Illinois Public Health Institute

2 Roadmap Highlights In 2013, the U.S. Centers for Disease Control and Prevention's, Healthy Aging Program and the Nat l Alzheimer s Association developed the second in a series of road maps to advance cognitive health as a vital, integral component of public health. The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships,

3 Roadmap Highlights How state and local public health agencies and their partners can promote cognitive functioning, address confusion and memory loss among community members and help meet the needs of care partners. Public health and aging agencies and private, nonprofit, and governmental partners are encouraged to work together on actions that best fit their missions, needs, interests and capabilities.

4 Roadmap Action Items 35 action items addressing four traditional domains of public health: 1) monitor and evaluate 2) educate and empower the nation 3) develop policy and mobilize partnerships 4) assure a competent workforce Prioritized (Delphi) Nat l Association of Chronic Disease Directors experts, state CD directors and local reps

5 Prioritized Action Items 1. Promote incorporation of cognitive health and impairment into state and local public health burden reports. [Develop Policy and Mobilize Partnerships (P), P-03] 2. Use surveillance data to enhance awareness and action in public health programming (e.g. link Behavioral Risk Factor Surveillance System questions on cognition to other health-related quality of life or falls prevention). [Monitoring and Evaluate (M), M-02] 3. Develop strategies to help ensure that state [and local] public health departments [and aging partners] have expertise in cognitive health and impairment related to research and best practices. [Ensure a Competent Workforce (W), W-01] 4. Collaborate in the development, implementation and maintenance of state Alzheimer's disease plans. [P-01] 5. Engage national and state organizations and agencies to examine policies that may differentially impact persons with dementia, including Alzheimer s disease. [P-05] 6. Integrate cognitive health and impairment into state and local government plans (e.g., aging, coordinated chronic disease, preparedness, falls and transportation plans). [P-02]

6 IDPH Current Efforts Legislation (Unfunded) AD Advisory Committee AD Research Fund AD state plan every three years Reports from the three state AD Centers

7 IDPH New HBI Efforts Opportunity Grants to Implement Selected Action Items from The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, (Roadmap) IDPH placed importance on applying for funds One of six states/areas to receive grant Arizona, Hawaii, Illinois, Minnesota, Wisconsin, Puerto Rico April 1, 2014 to March 31, 2015 All funds awarded to partner grantees

8 Illinois Healthy Brain Initiative Funding to IDPH Develop state and regional data Burden Briefs and a statewide webinar to increase awareness and promote use of data (#2, M-02; Med/Large Scope) Assess state and local organizational competencies and capacity to address confusion and memory loss and care partner needs, and develop a report of findings for future workforce training development (#3, W-01; Low Scope) Prioritize current Illinois Alzheimer s Disease State Plan-2014 recommendations and identify next steps in state plan implementation (#4, P-01; Med Scope)

9 IDPH Team Data & Surveillance Efforts

10 Burden Report Primary Data Source Illinois Behavioral Risk Factor Surveillance System Data (BRFSS) Cognitive Impairment (CI) Module Caregiver Module Demographics Analysis Prevalence Comparison of those with CI vs. those who care for people with CI

11 What is BRFSS? Telephone random-digit dial survey of land and cell phones for adults 18 years of age or older to estimate prevalence of health indicators, risk behaviors, and chronic disease Standardized core questionnaire, optional modules, and state-added questions Self-reporting of age, sex, race/ethnicity, income, education, health insurance, veteran s status, disability, and health condition status Largest continuously conducted health survey system in the world

12 What is BRFSS? Weighted to equalize probability of being selected for the survey, corrects for variation of age/race/sex group between sample and population, and permit generalization of survey data Strata: Chicago, suburban Cook County, collar counties, urban counties, rural counties Collar counties: DuPage, Kane, Lake, McHenry and Will Urban counties: Champaign, DeKalb, Kankakee, Kendall, McLean, Macon, Madison, Peoria, Rock Island, Sangamon, St. Clair, Tazewell and Winnebago Rural counties: Remaining 83 counties

13 Cognitive Impairment Module The next few questions ask about difficulties in thinking or remembering that can make a big difference in everyday activities. This does not refer to occasionally forgetting your keys or the name of someone you recently met. This refers to things like confusion or memory loss that are happening more often or getting worse. We want to know how these difficulties impact you or someone in your household.

14 Cognitive Impairment Module 1. During the past 12 months, have you experienced confusion or memory loss that is happening more often or is getting worse? 2. Not including yourself, how many adults 18 or older in your household experienced confusion or memory loss that is happening more often or is getting worse during the past 12 months? 3. Of these people, please select the person who had the most recent birthday. How old is this person? 4. During the past 12 months, how often have you or has this person given up household activities or chores you or they used to do, because of confusion or memory loss that is happening more often or is getting worse? 5. As a result of your or this person s confusion or memory loss, in which of the following four areas do you or does this person need the MOST assistance?

15 Cognitive Impairment Module 6. During the past 12 months, how often has confusion or memory loss interfered with your or this person s ability to work, volunteer, or engage in social activities? 7. During the past 30 days, how often have you or has a family member or friend provided any care or assistance for you or this person because of confusion or memory loss? 8. Has anyone discussed with a health care professional, increases in your or this person s confusion or memory loss? 9. Have you or Has this person received treatment such as therapy or medications for confusion or memory loss? 10. Has a health care professional ever said that you have or this person has Alzheimer s disease or some other form of dementia?

16 Caregiver Module People may provide regular care or assistance to a friend or family member who has a health problem, long-term illness, or disability. 1. During the past month, did you provide any such care or assistance to a friend or family member? 2. What age is the person to whom you are giving care? 3. Is this person male or female? 4. What is his/her relationship to you? For example is he/she your (mother/daughter or father/son)? 5. For how long have you provided care for that person

17 Caregiver Module 6. What has a doctor said is the major health problem, long-term illness, or disability that the person you care for has? 7. In which of the following areas does the person you care for most need your help? 8. In an average week, how many hours do you provide care for that person because of his/her health problem, long-term illness, or disability? 9. I am going to read a list of difficulties you may have faced as a caregiver. Please indicate which one of the following is the greatest difficulty you have faced as a caregiver. 10. During the past year, has the person you care for experienced changes in thinking or remembering?

18 Healthy Brain Report Statewide burden report Regional burden reports for each of the 13 AAA

19 Other Products Statewide healthy brain infographic Key findings Plan to depict the number of hours caregivers spend and cost

20 Illinois Public Health Institute Illinois Alzheimer s Disease State Plan Prioritization and Action Planning

21 Purpose Convene stakeholder meetings to prioritize state plan recommendations and identify next steps by January 30, Create an action plan citing resources and capacity needed to implement priority recommendations by March 30, Identify recommendations feasible to implement without additional resources by March 30, Develop a report of findings by March 30, 2015.

22 Initial Survey Surveyed ADAC Members and Partners Level of familiarity with categories of services and recommendations in state plan Willingness to participate in webinars or view recorded sessions to review recommendations

23 ADAC Survey

24 Pre-Meeting Webinars Experts presented on the recommendations Provided opportunity for participant questions Included interactive poll questions to assess Initial thought on level of priority for the set of recommendations under a category Ability to support the recommendations financially or with other resources

25 October 17 th Webinar / 1:00 PM 2:30 PM Category of Service or Recommendations Presenter Regional Alzheimer s Disease Centers Public Safety and Law Enforcement Alzheimer s Disease Primary Provider Sites Residential Options for Person s with Dementia Quality Care Measures -Skilled Nursing Facilities -Assisted/Supportive Living -Other Residential Settings Bob Struble Tom Ala Greg Kyrouac Susan Frick Nancy Flowers

26 October 21 st Webinar / 10:30 AM 12:00 PM Category of Service or Recommendations Presenter Dementia Specific Training Dementia Care Services Home and Community-based Services Geriatric Psychiatric Services State Supported Research Illinois Department on Aging Judi Hertz Darby Morhardt Darby Morhardt Orlinda Speckhart Raj Shah Mary Mayes

27 Prioritization and Action Planning Meetings Participants will include: ADAC Members and other Partners Prioritization of: 11 Categories 63 Recommendations Technology of Participation (ToP) Facilitation Methods Thursday, October 30, PM 4:00 PM Rush University Medical Center Searle Conference Center, Room Sippy 5 th floor of Professional Building 1725 W. Harrison Chicago, IL Wednesday, December 10, AM 12:00 PM Held in conjunction with the 33 rd Annual, Governor s Conference on Aging and Disability Marriott Downtown 540 N. Michigan Avenue Chicago, IL 60611

28 October 30 th Meeting/ Noon 4 PM Established group norms and agreements to help ensure we maximize our effectiveness in group work Defined the purpose of prioritizing and action planning Identified potential audiences and funders for state plan recommendations Identified potential prioritization criteria

29 Continued - October 30 th Meeting Explored the status of the recommendations Progress update - What is occurring in regards to implementation of the issue? Who is involved with the work? Priority next steps What still needs to be done or improved? Alignment with National Alzheimer s Disease Roadmap Estimated financial cost for implementation Additional resources needed for implementation

30 Post-Meeting Survey Ranked the 9 dementia capable state items Identified the top 5 prioritization criteria for long-term actions Identified the top 5 prioritization criteria for short-term actions Indicated willingness to participate in a pre-meeting webinar

31 Ranking of 9 Dementia-Capable State Items

32 Top 5 Criteria for Long-Term Priorities

33 Top 5 Criteria for Short-Term Priorities

34 December 10 th Meeting / 9 AM - Noon Finalize prioritization criteria. Apply prioritization criteria to short-term initiatives we can do now with existing resources and longer-term initiatives for future funding. Identify top priorities to develop goals and objectives for future funding.

35 Prioritization Criteria Selected and Applied Long-Term Initiatives in Need of Funding Short-term Initiatives With Little to No Funding Needed

36 Long-Term Priorities

37 Short-Term Priorities

38 Next Steps January and February Develop goals, objectives and strategies for longterm priorities. Identify resource needs and potential barriers/solutions. Identify next steps and willing partners to begin work on short-term priorities. March Finalize action plan. Develop report.

39 Southern Illinois University School of Medicine (SIU-MED) Assessment of Organizational Competencies Related Alzheimer s Disease and Related Disorders to Address Dementia Care and Administration

40 Overview Used the National Association of Chronic Disease Directors (NACDD) list of competencies as source material Enlisted 6 subject matter experts from academia (4), local health department (1) and area agency on aging (1) This was an iterative process of adding, deleting and rephrasing items from the NACDD list NACDD personnel consulted on the process Produced final list of 65 items covering 9 domains

41 Competency Assessment Survey: Domains and Corresponding Items Diagnosis (4 items) E.g., My agency knows the components of neuropsychological assessment of AD and related disorders Brain health (4 items) E.g., My agency knows the difference between AD and dementia Symptoms and interventions (11 items) E.g., My agency can describe how the person with AD and related disorders may experience the surrounding world

42 Competency Assessment Survey: Domains and Corresponding Items Patient well-being and safety (8 items) My agency knows procedures for reporting abuse, neglect and self-neglect of people with AD and related disorders Reduce caregiver stress and burden (3 items) My agency knows typical signs of burnout among care partners of individuals with AD and related disorders Build support (11 items) My agency advocates for educational programs on AD and related disorders

43 Competency Assessment Survey: Domains and Corresponding Items Design and evaluate programs (7 items) My agency uses logic models for AD and related disorders programs Manage program and resources (9 items) My agency sets AD and related disorders program goals and objectives Use public health science (8 items) My agency understands the prevalence of AD and related disorders

44 Competency Assessment Survey: Next Steps Data collection in progress Report of prioritized findings scheduled for March 2015