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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
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, 2013–2018
http://www.cdc.gov/aging/pdf/2013-healthy-brain-
initiative.pdf
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, non-
profit, and governmental partners are encouraged to
work together on actions that best fit their missions,
needs, interests and capabilities.
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
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]
IDPH Current Efforts
Legislation (Unfunded)
AD Advisory Committee
AD Research Fund
AD state plan every three years
Reports from the three state AD Centers
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, 2013 – 2018 (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
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)
Data & Surveillance Efforts
IDPH Team
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
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
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
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.”
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?
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?
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
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?
Healthy Brain Report
Statewide burden
report
Regional burden reports
for each of the 13 AAA
Other Products
Statewide healthy
brain infographic
Key findings
Plan to depict the
number of hours
caregivers spend
and cost
Illinois Alzheimer’s Disease State Plan
Prioritization and Action Planning
Illinois Public Health Institute
Purpose
Convene stakeholder meetings to prioritize state
plan recommendations and identify next steps by
January 30, 2015.
Create an action plan citing resources and capacity
needed to implement priority recommendations by
March 30, 2015.
Identify recommendations feasible to implement
without additional resources by March 30, 2015.
Develop a report of findings by March 30, 2015.
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
ADAC Survey
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
October 17th Webinar / 1:00 PM – 2:30 PM
Category of Service or Recommendations Presenter
Regional Alzheimer’s Disease Centers Bob Struble
Public Safety and Law Enforcement Tom Ala
Alzheimer’s Disease Primary Provider Sites Greg Kyrouac
Residential Options for Person’s with
Dementia
Susan Frick
Quality Care Measures
-Skilled Nursing Facilities
-Assisted/Supportive Living
-Other Residential Settings
Nancy Flowers
October 21st Webinar / 10:30 AM – 12:00 PM
Category of Service or Recommendations Presenter
Dementia Specific Training Judi Hertz
Dementia Care Services Darby Morhardt
Home and Community-based Services Darby Morhardt
Geriatric Psychiatric Services Orlinda
Speckhart
State Supported Research Raj Shah
Illinois Department on Aging Mary Mayes
Prioritization and Action Planning Meetings
Thursday, October 30, 2014
12 PM —4:00 PM
Rush University Medical Center
Searle Conference Center, Room Sippy
5th floor of Professional Building
1725 W. Harrison
Chicago, IL 60612
Wednesday, December 10, 2014
9 AM—12:00 PM
Held in conjunction with the 33rd Annual, Governor’s Conference on Aging and Disability
Marriott Downtown
540 N. Michigan Avenue
Chicago, IL 60611
Participants will include:
• ADAC Members and other
Partners
Prioritization of:
• 11 Categories
• 63 Recommendations
Technology of Participation
(ToP) Facilitation Methods
October 30th 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
Continued - October 30th 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
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
Ranking of 9 Dementia-Capable State Items
Top 5 Criteria for Long-Term Priorities
Top 5 Criteria for Short-Term Priorities
December 10th 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.
Prioritization Criteria Selected and Applied
Long-Term Initiatives in Need of
Funding
Short-term Initiatives With Little to
No Funding Needed
Long-Term Priorities
Short-Term Priorities
Next Steps
January and February
Develop goals, objectives and strategies for long-
term 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.
Assessment of Organizational Competencies
Related Alzheimer’s Disease and Related Disorders
to Address Dementia Care and Administration
Southern Illinois University School of Medicine
(SIU-MED)
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 re-
phrasing items from the NACDD list
NACDD personnel consulted on the process
Produced final list of 65 items covering 9 domains
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
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
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
Competency Assessment Survey: Next Steps
Data collection in progress
Report of prioritized findings scheduled for
March 2015