Intellectual Disabilities, Aging and Dementia
Zoom Workshops and Events
Aging with Intellectual and Developmental Disabilities: Hawaiʻi’s Resources: Collaborations, Hopes, Challenges and Accomplishments
Presenters: Kathieen M. Bishop, PhD, Kathryn Pears MMPM, Ritabelle Fernandes, MD, MPH, & Daintry Bartoldus
Archived Zoom Workshop Videos for Intellectual and Development Disabilities
Aging, Brain Health, and Cognitive Decline for Persons with Intellectual & Developmental Disabilities
Presenter: Ritabelle Fernandes, MD, MPH Associate Professor, Department of Geriatric Medicine John A. Burns School of Medicine, University of Hawaii
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)
Part 1: AGING, DEMENTIA AND IDD: What does it mean for you as the caregiver?
Presenter: Kathryn Pears, MMPM
Part 2: ALL BEHAVIOR HAS MEANING: Supporting your loved ones through Alzheimer’s disease & related dementias
Presenters: Kathryn Pears, MMPM and Kathleen Bishop, PhD
COVID-19 & Down Syndrome Resource
“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
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
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
