- This workgroup has been meeting monthly. The group edited and updated IDPH’s Core Competencies, a foundational guide for developing high quality Alzheimer’s Disease and Related Disorders (ADRD) training programs. The updated 2021 Core Competencies have been published on IDPH’s Alzheimer’s Disease webpage.
- This workgroup will also focus on workforce expansion by examining strategies to increase awareness of career paths, partnerships, training programs and certifications that promote the growth of professionals who enter careers serving people who have Alzheimer’s or related dementias and their families.
Regional Alzheimer’s Disease Assistance Centers
In April and October 2021, the ADAC convened for the biannual meetings. During the fall meeting, the three Regional Centers shared updates of their dementia care work and accomplishments for fiscal year 2021. Highlights are shared in this report as follows:
Northwestern Alzheimer’s Disease Assistance Center for Northern Illinois
- New partnership with AllianceChicago, a collaboration of Federally Qualified Health Centers (FHQCs) in the Chicago area.
- Buddy program was offered entirely online with 21 students and mentor dyads completing the program. Twenty have signed up for the coming year for what will be a hybrid in-person and remote program.
- One physician fellow completed clinical training; two new physicians began their two-year fellowships.
- Two social workers have completed their Social Work Fellowship in Neurocognitive Disorders; a third fellow started the fellowship in August 2021.
- Mesulam Center Seminar Series -- 13 seminars were held online during this reporting period and were attended by an average of 48 attendees.
- The 27 th Annual Alzheimer Day was held online May 6, 2021.
- Primary Progressive Aphasia Conference was held in March 2021.
Rush Alzheimer’s Disease Assistance Center for Northern Illinois
- Rush Memory Clinic adapted services to include clinical care via telemedicine (including live video) and mobile phone encounters to supplement in-person clinical care.
- Given the cognitive complications of COVID-19 (such as “brain fog”), the Rush Memory Clinic team developed a tailored neuropsychological testing battery and a new clinical evaluation protocol, which has been offered as one of the subspecialty services within the larger Rush multi-disciplinary long-haulers clinic.
- Without Warning, a support group for persons with early-onset dementia and their family members, continued meetings in a virtual format; created a website with videos from group members; and, in partnership with Lorenzo’s House, provided a one-day virtual day camp in June 2021 for kids of families living with younger onset Alzheimer’s Disease.
- Rush has been leading the ADRD Working Group with CATCH-ON, a Health Resources and Services Administration (HRSA)-funded Geriatric Workforce Enhancement Program. The “train the trainer” program has been provided to more than 186 health professionals and a Geriatric Members Interest Group at the Illinois Academy of Family Physicians was established.
- Rush and Leading Age Illinois offered their newly revised Dementia Leadership Course in a virtual format with an ongoing network component twice in the last year with attendance of around 80 per event.
Southern Illinois University (SIU), School of Medicine, Center for Alzheimer's Disease and Related Disorders
- SIU Memory and Aging Network primary provider partner sites saw 672 patients for initial clinical assessments and 1,530 follow up visits.
- SIU’s RADAC received a grant to extend non-pharmacological interventions through December 2021 and used this funding to support the evidence-based programs for dementia patients and caregivers.
- Research progress included work on 31 active studies, 12 of which were investigator-initiated, 14 were industry sponsored studies, and five were animal model studies. Faculty and staff contributed to 15 peer-reviewed publications and 13 national and international publications, an increase in both from last year.
- 115 educational programs for caregivers and health care providers were held with attendance of 1,126.
- Implemented a new caregiver training titled “What to Expect When You Are Not Expecting … to be a Caregiver,” designed to equip family caretakers with tools to provide support to the individual with dementia still living at home.
- Together, in fiscal 2021, CARE faculty and personnel contributed to nine peer-reviewed publications, 10 nations/international presentations, five active externally funded bench/translational research grants, nine industry-sponsored clinical trials, eight investigator initiated clinical research studies, and several scientific abstracts presented at national and international conferences.
State Agencies
In April and October 2021, the ADAC convened for its biannual meetings. During the fall meeting, the state agencies represented on the ADAC shared highlights of their dementia care work and accomplishments for fiscal year 2021. Highlights are shared in this report as follows:
Illinois Department on Aging (IDoA)
- IDoA has again been awarded $1 million in state general revenue funds to sustain services for persons living with dementia (PLWD) and their caregivers that were previously piloted and funded with Administration for Community Living discretionary grants.
- Funds are given directly to the 13 Area Agencies on Aging to support: Savvy Caregiver, Stress Busting for Caregivers, and Gap Filling.
- IDoA has also supported other activities, services, and interventions, including:
- Dementia Friendly Illinois—a Dementia Friendly America movement to establish dementia friendly communities in Illinois that are equipped to support people living with dementia and their caregivers. IDoA redirected one of its long-time state grants to develop this initiative, and each Area Agency on Aging is required to add one dementia friendly community in their area by 2025.
- TCARE—Tailored Caregiver Assessment and Referral is an on-line care management referral system designed to support family members who are providing care to adults of any age with chronic or acute health conditions, which can benefit people with ADRD and their families. Many of the Area Agencies on Aging have established TCARE with CARES Act Funding, and IDoA has received a small grant from the National Academy for State Health Policy to aid in establishing TCARE throughout Illinois.
- Adaptive Equipment Corner -- an Illinois-based company that provides instructional videos for caregivers and individuals living alone about how to use adaptive equipment safely. The Area Agencies on Aging are providing the log-in so that the videos and assistance are free to seniors and caregivers. Although this service is not specifically targeted to PLWD and their caregivers, caregivers especially have benefitted by lessening the stress of managing co-morbidities.
- GetSetUp is— an interactive website that provides education and social interaction to people living with dementia and their caregivers.
Illinois Department of Healthcare and Family Services (IHFS)
- The IHFS Supportive Living Program (SLP) is an approved Home and Community Based Services waiver for assisted living services. The SLP dementia care setting program was developed to adapt the SLP model to meet the change in needs of people with dementia who would otherwise have to transfer to a nursing facility.
- Of the 155 SLP providers and more than 12,900 apartments, 11 providers and more than 300 dementia care designated apartments are currently certified for dementia care.
- In 2018, IHFS approved 41 applicants to develop new dementia care sites. The pandemic caused a delay in development, but in 2021, eight new dementia care sites were certified.
Illinois Department of Human Services (IDHS)
- At this time, IDHS does not have programs tailored to individuals with ADRD and their families.
- When individuals receiving IDHS services exhibit symptoms that might indicate Alzheimer’s disease or other types of dementia, IDHS systems utilize community resources to assist their dementia need.
- IDHS’s ADAC non-voting member attends the bi-annual ADAC meetings to learn about ADRD efforts and be available for suggestions from the ADAC.
Illinois Guardianship and Advocacy Commission (IGAC)
- IGAC is comprised of three divisions: Office of State Guardian, Legal Advocacy Service, and Human Rights Authority.
- The Office of State Guardian (OSG) serves as the court-appointed guardian for adults with disabilities under the Illinois Probate Act. A significant number of recipients have dementia or dementia-related conditions.
- The guardianship services, which include making health care and financial decisions, provided are not specific to dementia, but when OSG offers guardianship services for someone with dementia, the guardianship representative will cater the services to meet the needs of the ward with dementia.
- IGAC’s ADAC non-voting member attends the bi-annual ADAC meetings to learn about ADRD efforts and be available for suggestions from the ADAC.
Community Partnerships and Collaborations
Community partnerships and collaborations are integral to the effective coordination of quality dementia care in Illinois. The following partnerships highlight just a few of the important collaborations that are advancing dementia capability for Illinois.
Alzheimer’s Association
The Alzheimer’s Association is one of the nation’s leading organizations in Alzheimer’s care, support, and research. Ongoing and regular communication occurs with the Association’s Vice President of Public Policy and Advocacy, as well as the Director of State Affairs regarding important policy changes and initiatives. The Dementia Coordinator met with the Alzheimer’s Association Illinois Chapter’s programmatic leaders to learn about key activities that the IDPH Dementia Program can support and vice versa. These Alzheimer’s Association programs include education and outreach, support groups, care consultation, and health care initiatives. An additional meeting was held with the Regional Health Systems Director to discuss potential areas for partnership, including performance improvements within health systems for dementia assessment and care, implementing more evidence-based dementia practices within systems, and involving caregivers in dementia care planning across settings. The Dementia Coordinator met with the national office’s Associate Director for the Healthy Brain Initiative to gain insights about how this initiative is being implemented in other parts of the nation, as well as national guidance about the frequency of administering the caregiver and cognitive modules of the Behavioral Risk Factor Surveillance System.
The Illinois Cognitive Resources Network
The Illinois Cognitive Resources Network (ICRN) is a coalition created by the three Regional Alzheimer’s Disease Assistance Centers to build a network between stakeholders to reduce silos and optimize efforts across the state. The ICRN mission is to leverage the strengths of the volunteer health organizations focusing on ADRD, the Regional Alzheimer’s Disease Assistance Centers, and organizations in the aging, disability, and public health networks to optimize the cognitive and functional well-being of Illinois residents and their families. In 2021, the ICRN continued its work to advance Dementia Friendly Illinois and Dementia Friends Illinois efforts throughout the state. The ICRN supports information exchange platforms, including hosting 10 virtual meetings in the last year among members for planning purposes. The ICRN also maintains content on a web-based education and resource platform (ilbrainhealth.org). While some efforts were reduced as a result of the COVID-19 pandemic, the ICRN has supported planning calls among the three HRSA-funded Geriatric Workforce Engagement Programs for sharing and disseminating ADRD professional education resources. The Dementia Coordinator attends ICRN’s monthly meetings to update the network on IDPH Dementia Program efforts, as well as keeping apprised of the efforts occurring around the state for ADRD. The ICRN’s partnership with IDPH, IDoA and multiple community stakeholders is instrumental in advancing dementia capability throughout the state.
Dementia Friendly Illinois
Dementia Friendly Illinois is a network under Dementia Friendly America seeking to develop and to expand the number of communities in Illinois equipped to effectively support people living with dementia and their caregivers. As of October 2021, Illinois has 19 communities designated as Dementia Friendly, 6,601 Dementia Friends, and 122 people trained as Dementia Champions. Expanding Dementia Friendly communities and training community members who are knowledgeable and equipped to support people with ADRD at a local level are significant initiatives in helping to make Illinois more dementia capable.
Coroners Webinar
In September 2021, the IDPH Dementia Program collaborated with Rush University Medical Center to deliver a webinar to Illinois coroners and medical examiners. The webinar was titled “Alzheimer's Disease: The Importance of Autopsies in Diagnosis, Treatment, and Research.” It provided information to coroners and to medical examiners regarding the important role of autopsies in diagnosing and researching Alzheimer’s Disease. The Dementia Coordinator invited all coroners and medical examiner(s) from the state and disseminated the webinar flyer through the ADAC networks. The coroners in attendance were awarded one continuing education unit approved by the Illinois Coroners Training Board.
Age-Centered Civil Society
IDPH and IDoA began meeting quarterly in mid-2021 to discuss efforts around supporting an age-centered civil society in Illinois.
New Legislation
In August 2021, the Illinois General Assembly passed Public Act 102-0399 to help prepare Illinois’ workforce to become more dementia capable. This legislation requires physicians and other health care professionals who serve adult populations and have direct patient interactions to receive dementia training as part of their licensure renewal requirements. Illinois is the first state in the nation to pass legislation of this kind.
Training Initiatives
In 2021, legislators passed Public Act 102-004, which amended the Adult Protective Services Act (320 ILCS 20), to include dementia training. Individuals who are involved in the provision of adult protective services are required to have two hours of training on dementia upon hire and two additional hours annually. The Alzheimer’s Association developed two initial trainings including, Dementia Specific Training for APS and Community Workers and 10 Warning Signs of Alzheimer’s. IDoA has distributed these trainings both internally and to the APS network of providers and administrative agencies for completion, which will support this new requirement.
In development for 2022, the new Alzheimer’s Disease Physician Early Detection Training Program will support the new training mandate for physicians and health care professionals by equipping them with best practices for ADRD early detection methods, efficient clinic procedures, and referral procedures to increase early detection.
IDPH Funded Projects
In collaboration with the Office of the Lieutenant Governor, IDPH released a notice of funding opportunity in spring 2021 to grant special funds for creating an online platform that serves as a one stop shop for people to learn more about Alzheimer’s disease and related dementias, and the services that are available to communities. Rush University Medical Center was awarded the grant, and the project began October 1, 2022. IDPH and Rush meet monthly to discuss progress on developing the platform to benefit all Illinoisans, including those in Black, Brown, and rural communities, as well as individuals and families impacted by younger onset dementia.
The IDPH Dementia Program was allocated $1 million in general revenue funds for fiscal year 2022. In collaboration with the ADAC Strategic Budget Planning Workgroup, the Dementia Program has developed two additional grant opportunities—the Alzheimer’s Disease Early Detection and Awareness Campaign program and the Alzheimer’s Disease Physician Early Detection Training program. The purpose of the Alzheimer’s Disease Early Detection and Awareness Campaign is to increase public awareness about brain health, the early warning signs and symptoms of cognitive decline and dementia, and the importance of talking to a professional about being screened and assessed for ADRD, with a particular focus on high-risk and underserved populations. The purpose of the Alzheimer’s Disease Physician Early Detection Training grant is to increase early detection and diagnosis of ADRD by physicians and medical providers by equipping them with best practices for ADRD early detection methods, efficient clinic procedures, and referral procedures tailored to their local communities, with a particular focus on high-risk and underserved populations. The projects will take place from February 1, 2022, through June 30, 2022.
The Behavioral Risk Factor Surveillance System
The Behavioral Risk Factor Surveillance System (BRFSS) was established in 1984 as a collaboration between the U.S. Centers for Disease Control and Prevention (CDC) and state health departments and has grown to be the primary source of information on behaviors and conditions related to the leading causes of death for adults in the general population. In Illinois, BRFSS is a state-based program that gathers information on risk factors among adults 18 years of age and older through monthly telephone surveys.
Important to the Dementia Program are the BRFSS cognitive and caregiver modules, both of which are recommended in the Alzheimer’s Disease State Plan to be administered in Illinois based on national guidance. Most recently, Illinois administered the cognitive module in 2020 and the caregiver module in 2021. As in past years, the IDPH epidemiology team will utilize the data to create burden briefs made available to the Illinois Alzheimer’s Disease Network and the public. The goal is to utilize the BRFSS data and other surveillance data to enhance public health programming, including collaborative health promotion in other chronic disease areas.
Next Steps
The following are 2022 areas of focus for carrying out the recommendations of the 2020-2023 Alzheimer’s Disease State Plan.
- Dementia Friendly Illinois—a Dementia Friendly America movement to establish dementia friendly communities in Illinois that are equipped to support people living with dementia and their caregivers. IDoA redirected one of its long-time state grants to develop this initiative, and each Area Agency on Aging is required to add one dementia friendly community in their area by 2025.