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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