National Healthy Brain Initiative for People with Intellectual and Developmental Disabilities

Healthy Brain Initiative for People with Intellectual and Developmental Disabilities (IDD) project through the HealthMattersTM Program, in partnership with the National Task Group on Intellectual Disabilities and Dementia Practices and the ENGAGE-IL HRSA Geriatrics Workforce Enhancement Program (GWEP). HBI one of three Component B projects with the CDC’s National Healthy Brain Initiative (CDC-RFA-DP20-2003). Two other organizations addressing dementia in populations experiencing a high burden of Alzheimer’s disease and related dementias (ADRDs) include the International Association for Indigenous Aging (IA2) and UsAgainstAlzheimer’sIA2 is continuing their Healthy Brain Initiative’s Road Map for Indian Country by developing a national hub for Alzheimer’s disease and related dementias (ADRD) serving Indian country. The Alzheimer’s Association continues their work assisting with national implementation and evaluation of the broader Healthy Brain Initiative’s Road Map Series. 

HBI Mission

The Healthy Brain Initiative for People with Intellectual and Developmental Disabilities (IDD)’s mission aims to 1) raise awareness of brain health among people with IDD and positive approaches that support people with IDD experiencing Alzheimer’s disease and other dementias; 2) build interprofessional partnerships for an inclusive competent workforce; and, 3) improve engagement of people with IDD and caregivers to access quality healthcare related to brain health and improve health outcomes.

Of the approximately 46.2 million adults ages 65 years and older in the U.S. [1], about 11,000 (6%) of the 180,000 older PwIDDs will be affected by some form of ADRD after the age of 60 (percentages increase with age).

This project, lead by Beth Marks, PhD, RN, FAAN, Jasmina Sisirak, PhD, MPH, and Matthew Janicki, PhD is concentrating current efforts being done in the fields of ADRD and IDD fields into one Community of Practice for PwIDD, their caregivers, healthcare providers, public health and policy stakeholders. Valerie Gruss, PhD, APN, CNP-BC, FAAN, as the Project Director of ENGAGE-IL, which is a HRSA Geriatrics Workforce Enhancement Program (GWEP) is partnering with the HBI team to establish and disseminate an education program to health care professionals and caregivers to provide high-quality, patient-centered care related to ADRDs to PwIDD and their supports.

A healthy brain community-of-practice for PwIDD is a “one-stop space” that offers products, trainings, and materials to raise awareness of Alzheimer’s disease and other dementias among people with IDD decrease disparities for those experiencing ADRD and improve PwIDD and caregiver’s quality of life.

Program Aims

  1. Support people with IDD and their caregivers by developing and implementing public health strategies related to brain health to improve the health outcomes among people with IDD.
  2. Raise awareness of Alzheimer’s disease and other dementias  among people with IDD as a public health issue. 
  3. Support caregivers to care for people with IDD and care for themselves.

The Brain Health Initiative empowers and educates people with IDD and their caregivers to actively engage in their health and lifestyle goals!

Healthy Brain Initiative Road Map Series

The Healthy Brain Initiative Road Map Series (2018-2023) and the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices National Strategy for People with IDD’s ‘My Thinker’s Not Working’ is guiding the Health Brain Initiative.

The HBI project is developing and implementing public health strategies to improve the quality of life of PwIDD by raising awareness of ADRDs among PwIDD as a public health issue and support caregivers to care for PwIDD and care for themselves.

Changing the myth… dementia is NOT a natural course for people with intellectual and developmental disability.

Strategies

  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.
  3. Embed evaluation into training and caregiving support programs to determine program accessibility, affordability, effectiveness, and impact.

Brain health begins with ongoing discussions between people with IDD, their caregivers, and health care professionals about health-care options, lifestyle goals, and preferences.

Healthy Brain Resources for People with IDD and their supports

Caregivers matter for quality of care and quality of life for people with developmental disability!

  1. US Administration on Aging, Aging Statistics. 2018.

A grant from the Centers for Disease Control and Prevention (CDC), National Center for Chronic Disease Prevention and Health Promotion, The Healthy Brain Initiative Award #1 NU58DP006782-01-00 supported the development of this website. Contents are solely the responsibility of the authors and do not represent the official views of CDC.

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