Intellectual Disabilities, Aging and Dementia

Q&A on COVID-19 and Down Syndrome

The unprecedented spread of the Coronavirus Disease 2019 (COVID-19) is presenting the world with a unique challenge and, in our case, calls for a united response to better understand its impact on the Down syndrome community. Information in this Question and Answer (Q&A) document can be used to help you support your loved one with Down syndrome.

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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):
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.”

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:
  • 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) 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

Webninars and Resources

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

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
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

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.