SAFD
Partenariat NTG
CDC Healthy Brain Initiative
The BOLD Infrastructure for Alzheimer’s Act was passed into law on December 31, 2018 (P.L. 115-406) [PDF – 312 KB] and amended the Public Health Service Act (Section 398A; 42 U.S.C. 280c-3-4). The activities outlined in the BOLD Act are designed to create a uniform national public health infrastructure with a focus on issues such as increasing early detection and diagnosis, risk reduction, prevention of avoidable hospitalizations, and supporting dementia caregiving.
The Healthy Brain Initiative for People with Intellectual and Developmental Disabilities at the University of Illinois Chicago is a CDC funded National Healthy Brain Initiative (HBI) Component B project. The HBI project focuses on people with lifelong intellectual and developmental disabilities who have a high burden of Alzheimer’s disease and related dementias (ADRD). Our partnership with the UIC HBI Project aims to provide training, education, and dissemination of brain health products via the evidence-based HealthMatters™ Program (HealthMattersProgram.org) and materials produced by the project partners and provided to community stakeholders, including people with ID and their supports and healthcare and public health professionals. The UCI HBI Project maintains cross-cutting efforts with other Component B projects and BOLD Centers of Excellence to bridge disability, aging, and health justice.
The UIC HBI Project activities aim to 1) educate and empower people with IDD (with and without dementia) and their supports (paid and unpaid caregivers and stakeholders) about brain health; 2) mobilize partnerships to implement the Road Map and increase number of people reached; and, 3) embed evaluation into training and support programs to determine program accessibility, affordability, effectiveness, and impact. Dementia is not a natural course for people with ID and they can engage in their healthcare with supports to prevent the adverse impact of ‘weathering’ and to access healthy brain lifestyles (e.g., move more, eat wise, rest well, learn more, be connected).
Resources and opportunities for stakeholders and local and state public health community includes the HealthMatters™ Program to improve healthcare and health outcomes where people with ID live, work, learn, play, and love. Universally designed community living options for people with ID including those with and without dementia; resources, articles, presentations/posters, and assistance in producing public health educational materials supporting people with ID are also available.
The principal investigators are Dr. Beth Marks – bmarks1@uic.edu and Dr. Jasmina Sisirak - jsisirak@uic.edu . Dr. Matthew Janicki is a collaborative investigator.
To access the UCI HBI Project site and more information...
NTG project aspects coordination is provided by Kathryn Service, RN, MS, FNP-BC, CDDN.
In development...
My Thinker is Working: Partnerships for Health Matters for People with Intellectual Disability
A new NTG-HealthMatters HBI GPS series including and positioning people with intellectual disability and their supports in healthy brain initiatives around the globe
Healthy Brain Initiative Collaborative Pre-Conference Workshop at GSA
2023 Annual Conference of the Gerontological Society of America
The NTG, through its project collaboration with the UIC HBI, participated in a pre-conference workshop held at the 2023 annual conference of the Gerontological Society of America. The workshop, titled “Engaging Diverse and Inclusive Audiences with the Healthy Brain Initiative Road Map” was held on November 8, 2023. The pre-conference workshop was linked to the CDC's recently released fourth edition of its Healthy Brain Initiative Road Map.
The workshop focused on enabling persons involved with intellectual and developmental disabilities, and Black and African American, Hispanic, and Indigenous communities to undertake risk reduction activities to enable a reduction of dementia. The workshop involved presentations and small group activities and discussions, and designed to participants to gain an increased understanding of the HBI Road Map and build skills and use resources to improve their ability to engage diverse and inclusive audiences. The UIC HBI team presented on aspects related to intellectual and developmental disabilities.
The participants from the UIC HBI grant project, included Dr. Beth Marks, Dr. Jasmina Sisirak, and Dr. Matthew Janicki from UIC, Kathryn Service from the NTG, and Joan Medlin (author and consultant) and Stacy Nonnemacher (NASDDDS) -- who were two of the project-supported scholars in attendance.
Participants: L -> R. Joan Medlen (OR), Dr. Beth Marks (UIC), Kathryn Service (NTG), Dr. Matthew Janicki (NTG), Stacy Nonnemacher (NASDDS)
Risk Reduction and Healthy Brain
Risk Reduction Information
Two-thirds of Americans have at least one major potential risk factor for dementia. Dementia is not a normal or inevitable part of typical brain aging. As we get older, it is common to experience some cognitive decline with typical brain aging, such as subtle changes in memory, thinking, and reasoning. However, there are factors that may comprise brain functioning and post a risk for dementia. Research evidence shows that addressing certain modifiable risk factors and promoting healthy behaviors can reduce the risk of cognitive decline, possibly reduce the risk of dementia, and protect cognitive health. Attending to lifestyle and behaviors can reduce or increase chances of developing a disease. Maintaining a healthy lifestyle and managing related chronic conditions is good for overall physical health, facilitates and improves brain health, and may help decrease the risk of dementia or slow its progression.
The graphic on the right illustrates some of the commonly recognized risk factors in general. Many of these apply equally to adults with intellectual disabilities. All would call for periodic health and lifestyle activity screenings and the application of remediations if significant risks are present.
Risk reduction is everyone's responsibility, including mates/ spouses, friends, advocates, as well as families and agencies.
