Intellectual Disabilities, Aging and Dementia

Current Zoom Workshops and Events





The following video is beneficial and recommended for families, service providers and healthcare professionals caring for aging adults with intellectual and developmental disabilities. Itʻs a basic introduction to the important curriculum created by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) https://www.the-ntg.org. The presenter, Hawaii geriatrician Dr. Ritabelle Fernandes, is a certified trainer for the NTG. This video was funded by the Alzheimerʻs Disease Programs Initiative grant awarded to Catholic Charities Hawaii from the Administration for Community Living, Washington D.C.

Dementia Capable Care of Adults with
Intellectual & Developmental Disabilities and Dementia

Presenter: Ritabelle Fernandes, MD, MPH
Associate Professor, Department of Geriatric Medicine
John A. Burns School of Medicine, University of Hawaii
Slides
NTG-Early Detection Screen for Dementia (NTG-EDSD)


Archived Zoom Workshop Videos for Intellectual and Developmental Disabilities


Healthcare Concerns for Adults Aging with Intellectual Disabilities:
Focus on Cognitive Impairment and Dementia

Presenter: Seth M. Keller, MD
Neurology Associates of South Jersey
Co-President: National Task Group on Intellectual Disabilities and Dementia Practices (NTG)
PDF Slides
NTG-EDSD Screening Document

Two leading national experts from the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) shared the most current knowledge on Aging, Disabilities and Cognitive Decline.
PART 1: Friday, October 30, 10-11:30am
AGING, DEMENTIA AND IDD: What does it mean for you as the caregiver?

Session 1: Understanding Aging, IDD, and Dementia
Aging does not equal disease; health advocacy and aging; risk factors and aging
Presenter: Kathleen Bishop, PhD
PDF Slides

Session 2: Dementia and IDD
Overview of dementia types, irreversible forms vs. potentially treatable; diagnosticprocess, signs/symptoms to rule out
Presenter: Kathryn Pears, MMPM
PDF Slides

PART 2: Friday, December 4, 10-11:30am
ALL BEHAVIOR HAS MEANING: Supporting your loved ones through Alzheimer’s disease & related dementias

Session 1: Understanding Behavior as a Form of Communication
All behavior has meaning; caregiver interaction, triggers for behaviors
Presenter: Kathryn Pears, MMPM
PDF Slides

Session 2: Environment and Sensory: You Can’t Change the Person but You Can Change the Physical Environment
Setting up the environment to reduce confusion; cost-effective modifications; goals of safety and comfort
Presenter: Kathleen Bishop, PhD



COVID-19 & Down Syndrome Resource

NTG joins with National Groups in Issuing Updated Resource
on COVID-19 and Down Syndrome

“With the continuation of the COVID-19 pandemic in the United States, the NTG has joined with several Down syndrome national organizations to produce and issue a new resource on COVID-19 and Down syndrome. The resource is available in English and Spanish. The resource provides up-to-date information on COVID-19, testing, vaccinations, and wellness for families and others concerned with the impact of COVID-19 upon persons of all ages with Down syndrome.” Taken from the NTG COVID-19 web page: https://www.the-ntg.org/covid-19-qanda

View PDF Here


An important objective of Catholic Charities Hawaiiʻs grant from the Administration for Community Living (ACL) is to improve the quality and effectiveness of programs and services to individuals aging with intellectual disabilities (ID) with dementia or at high risk for developing dementia.

The major national advocate for this issue and one of the principal collaborators on our grant is:

The National Task Group on Intellectual Disabilities & Dementia Practices (NTG): https://www.the-ntg.org/
From NTG website: “NTG is a coalition charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimerʻs disease and dementias – as well as their family and friends — are taken into account as part of the National Plan to Address Alzheimerʻs Disease.” https://aspe.hhs.gov/national-alzheimers-project-act#Council

Facts from NTG curriculum

  • Most adults with ID are typically at no more risk for dementia than the general population
  • Exception: Adults with Down syndrome (DS) are at increased risk!
  • Persons living with Down syndrome share a gene that causes Alzheimerʻs disease
  • 50% or more of people with Down syndrome will develop Alzheimerʻs dementia in their lifetimes. About 30% of people with DS who are in their 50s have Alzheimerʻs dementia. (from 2019 Alzheimerʻs Association Facts & Figures: https://www.alz.org/alzheimers-dementia/facts-figures)
  • Persons with Down syndrome can show signs of Alzheimerʻs disease at a younger age (40s and 50s)
  • There is a more rapid progression of the disease in this group
  • Adults aging with DS are at risk for diseases and changes about 20 years earlier than the general population
  • Alzheimerʻs disease presents differently in people with Down syndrome (abrupt onset of seizure activity, and other symptoms)
  • Conditions associated with IDD may be mistaken for symptoms of dementia (Diagnostic Overshadowing)

Catholic Charities Hawaii will be working closely with NTG experts on the following activities and will post these trainings and resources on this website as theyʻre developed:

  • Provide ongoing trainings and increase awareness on ID & Dementia for family caregivers and service providers for this population
  • Create a Hawaii booklet on Caregiving, Aging and Intellectual Disabilities to be printed and available online
  • Provide national and local webinars to caregivers and professionals on different topics related to intellectual disabilities and dementia
  • Increase Hawaii usage of NTGʻs Early Detection Screen for Dementia (NTG-EDSD) https://www.the-ntg.org/ntg-edsd. Itʻs recommended that this detection tool be used as a baseline assessment for persons with ID at age 40. The screening tools used to detect dementia in the larger population should not be used for persons living with ID, so NTG developed this customized instrument. Catholic Charities Hawaii will host webinar trainings of the usage of this tool to be given by family caregivers and providers who are familiar with their person with ID
  • Train and work with doctors who have patients with IDD to increase linkages and information on ID and Dementia
  • Produce a local video on ID and Dementia that will be linkable online and shown in group settings

Webinars and Resources

In the coming months, Catholic Charities Hawaii will archive webinars and resources related to Intellectual Disabilities and Dementia.

National Task Group on Intellectual Disabilities & Dementia (NTG) 2020 Series on COVID-19 and IDD

For the Catholic Charities Hawaii’s Circle of Care for Dementia grant from the Administration for Community Living, the NTG is partnering with us on increasing resources for persons with intellectual and developmental disabilities and their caregivers, professionals and service providers. In the Spring and Summer of 2020, NTG held a series of nine informative and timely national webinars on topics related to IDD and COVID-19. All speakers are national experts on these topics. They have provided us with access to all the recorded webinars. You can access each one here.

NTG will also be presenting Hawaii-specific webinars starting in October 2020 and through 2021. We’ll post notices of these upcoming workshops soon! Find out more about NTG at this link: https://www.the-ntg.org

Session 1 – April 7, 2020
1. Introduction to COVID-19
PDF Slides
2.Dementia and IDD
PDF Slides
Q&A on COVID-19 and Down Syndrom Handout

Session 2 – April 21, 2020
The Healthcare Concerns of COVID-19 in People with IDD and Dementia
Presenter: Seth Keller, MD, Co-Chair of the NTG
PDF Slides


Session 3 – April 28, 2020
Social Distancing, Dementia, COVID-19, and IDD
Presenter: Kathleen Bishop, PhD, NTG Steering Committee Member, Co-Chair of the NTG Education & Training Committee
PDF Slides
Handout

Session 4 – May 7, 2020
Keeping Healthy through COVID-19 with Infection Control and More
Presenter: Kathy Service, RN, FNP, NTG Steering Committee Member
PDF Slides


Session 5 – May 12, 2020
What’s Wrong with My Best Friend?: Explaining Dementia to Individuals with Intellectual & Developmental Disabilities, Witnessing it with Family & Friends
Presenter: Rick Rader, MD, NTG Steering Committee Member
PDF Slides

Session 6 – May 19, 2020
The Role of Ethics in Medical Decision-Making
Presenter: Jeanne Kerwin, D.MH, HEC-C, Bioethics and Palliative Care Consultant, Atlantic Health System, New Jersey
PDF Slides


Session 7 – May 26, 2020
What Are Your Wishes? How to Have Goals of Care Conversations
Presenter: Michele Carignan, RN, Hospice Clinical Liaison, Certified Dementia Practitioner, NTG Regional Trainer
PDF Slides

Session 8 – June 2, 2020
Self-Care for the Caregiver: Recognizing and Managing Stress during the COVID-19 Pandemic
Moderator: Helen Stepowany, MS; Panelists: Linda Clark, LCSW, Hospice & Palliative Care, Inc. Mohawk Valley, NY; Patricia Salzer, Registered Dietician, Workplace Wellbeing Coordinator, Excellus Blue Cross/Blue Shield, NY; E. Adel Herge, OTD, OTR/L, FAOTA, Jefferson University, Philadelphia
PDF Slides


Session 9 – June 9, 2020
When will I get sick?: How to Provide Education & Counseling to People with IDD in the COVID-19 Pandemic
Presenter: Patti Wade, CDCCI, Director, Orange Grove Center on Aging, Dementia and Longevity, Chattanooga, TN
PDF Slides



Aging Well with Disabilities: Strategies for Brain Health Across the Lifespan
Presented by Lucille Esralew, PhD
From March 2, 2020 PacRim Conference, Hawaii Convention Center

Accompanying PDF attachment links for this video:
PDF slides
NTG-EDSD Tool
Dr. Lucille Esralew Biosketch

Early Detection of Changes Associated with Cognitive Decline in Adults with Intellectual & Developmental Disabilities
Presented by Lucillle Esralew, PhD
Zoom Session, March 3, 2020

Accompanying PDF attachment links for this video:
PDF Slides
NTG-EDSD Tool


Supported in part by grant No. 90ADPI0011-01-00 from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy. The grant was awarded to Catholic Charities Hawaii for the Alzheimer’s Disease Program Initiative.