New and Noteworthy

NTG issues advisory on Long-COVID and its cognitive effects on adults with intellectual disability

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Concerns over the impact of Long-COVID   upon adults with intellectual  disability and the omission of clear guidance on this issue as lead the NTG to prepare an "Advisory on Long-COVID and Impact on Cognitive Function in Adults with Intellectual Disability."   The document is now available for download and use via this website.

The Advisory contains the NTG's position on this condition and addresses the background and definition of the cognitive aspects of Long-COVID, its symptoms and effects, what to look for with respect to symptoms, and what agencies and others can do to help adults affected by Long-COVID.

 

The Advisory covers these main points:

  • Long-COVID can include ‘brain fog’ (problems with thinking, motivation, and carrying out life activities).

  • Adults with intellectual disability infected with the SARS-COV-2 variant virus may experience Long-COVID.

  • Partners, families, and agencies need to be on the ‘look-out’ for changes in cognitive functions that may be due to Long-COVID.

  • Screening and assessment should be undertaken to determine presence of Long-COVID.

  • Accommodations and adaptations should be put in place to help mitigate effects of Long-COVID.

An exciting revamp of our website is underway!

We will maintain all of the important resource materials you are used to seeing, but will make it simpler to find them... new areas will be set aside for NTG members, and many new features will be added.  Expect to see our new website by the end of the year!

ID & Dementia Texas Project

The NTG is partnering with the University of Texas Health Science Center at Houston on an exciting new five-year project funded by the Texas Council on Developmental Disabilities.  

"Interdisciplinary Tele-enabled Health Homes for Aging Adults with Intellectual Disabilities" was conceived by the University of Texas Health Science Center at Houston to address the challenges faced by aging adults with intellectual disabilities and the scarcity of specialized health care services to address their needs.  The project will create an online HIPAA compliant interdisciplinary health center portal enabled by telehealth to reach all aging adults with IDD in Texas. Primary outcomes will be informed families/clinicians responsive to adults with IDD needing care, motivated stakeholders as change agents, and an interconnected network of trainers in urban and rural counties.

The NTG is providing statewide workshops on dementia-capable care of adults with intellectual disabilities, creating a statewide network of NTG Affiliated Regional Trainers, and launching a Texas-wide ID and Dementia Project ECHO.

The project has also organized a state stakeholders 'summit' to be held in Austin on December 7, 2022.  Participators will be a wild range of key local and state stakeholders affected by and involved in services for older adults with intellectual disabilities.  Key project principals, Dr. Seth Keller, Dr. Kathleen Bishop, and Ms. Kathryn Pears, are intimately involved in organizing and moderating the 'summit'. Other key participants include both national and Texas experts.

For more information click here or email kathrynpears@the-ntg.org.

Disappointing results from amyloid reducing drug trial

A decade-long clinical trial of a potential Alzheimer’s drug, crenezumab from the Roche Group, found that it failed to prevent or slow cognitive decline. The trial involved a number of adults in Colombia who have a genetic mutation that generally leads to the development of Alzheimer's disease when adults are in their mid-40s to mid-50s. The results are a set-back for drugs that target amyloid, which is believed to be instrumental in the development of dementia of the Alzheimer's type. Some positive outcomes were noted as the adults receiving crenezumab fared better than those adults receiving placebos and did not experience the same types of safety issues (such as brain bleeding or swelling) as those adults on other anti-amyloid therapies.

FMI: See New York TImes, June 17, 2022, "Disappointing Results in Alzheimer's Study" p. B3.

NTG issues guide sheet for physicians on the NTG-EDSD

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A new informative guide sheet is now available for primary care physicians who may be seeing an adult with an intellectual disability with possible cognitive decline.

 

The guide explains what the NTG-EDSD is and what information it contains. To download a copy click on the image.

US Down Syndrome Coalition Responds to CMS Ruling

The DS Coalition succeeded in having CMS remove discriminatory language from an important healthcare coverage determination that would have excluded people with Down syndrome from clinical trials for a new class of Alzheimer’s drug therapeutics. The next phase of the Coalition's collective advocacy will be focused on supporting

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the inclusion of people with Down syndrome in safety trials for upcoming Alzheimer’s drug treatments. 

More action is being planned to ensure equity in access to therapeutics to treat Alzheimer's disease in people with Down syndrome and inclusion in drug registries.  To read more about the CMS decision and the rationale behind the arguments raised by the Coalition, please go the LuMind IDSC Explainer (issued April 15, 2022) and noted below.

Spanish team finds positive effects from COVID-19 booster for adults with Down syndrome

Diego Real de Asua and his team at the Hospital Universitario de La Princesa in Madrid, Spain, have reported, from a study, that despite the fact that immune protection granted by COVID-19 vaccines wanes over time, a booster COVID-19 vaccine dose promotes a renewed, effective cellular and humoral immune response in adults with Down syndrome, akin to that seen in the general population. This findings were especially evident among adults over 40 years of age.

 

For access to the preprint of the article:

https://www.journalofinfection.com/article/S0163-4453(22)00675-2/fulltext#supplementaryMaterial

Training

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The NTG and its partner organization, NTG Canada, offer a package of workshops on intellectual disability and dementia.  These renown workshops are based on the NTG's evidence-informed curriculum modules on various topics related to intellectual disability and dementia. The workshop run two days and a third day is offered for trainers who wish to use the curriculum for education programs within their agencies.

U.S. Workshops

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We are scheduling workshops for 2023 currently.

Please check back for updates.

Click here for more information on these workshops, the NTG national training model curriculum, and how to host a NTG workshop in your area.

Canadian Workshops

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  Click here for more information

on  upcoming workshops in Canada.

To see flyer

NTG Co-President, Dr. Seth Keller, interviewed at AAN about new section on intellectual and developmental disabilities
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NTG Releases Report on
Cognitive Assessment Barriers

Dr. Seth Keller spoke to the new 'Adults with Intellectual and Developmental Disabilities Section' of the American Academy of Neurology (AAN). The goal of this section is providing resources and training to improve the medical care of all age persons who have an intellectual disability, autism, cerebral palsy, Down syndrome, and other neurodevelopmental disabilities.

A key focus of the section is addressing the issue faced when transitioning from a pediatric to the adult medical care world. Many adults face complications, including epilepsy and other seizure disorders, as well as movement disorders and spasticity, that warrant special attention.

Dr. Keller noted that “in older adults, one thing that’s quite prevalent in this group is younger-onset dementia, especially among adults with Down syndrome -- 60% of who may show the symptoms of Alzheimer disease by age 60. It's a real challenge and a tragedy when these difficulties arise in this population.” 

To read the full interview...

 Join the NTG

The NTG and the Lumind IDSC Foundation have issued a comprehensive report on the barriers to determining MCI and dementia in adults with neuroatypical conditions, such as acquired brain injury, autism, cerebral palsy, Down syndrome, intellectual disability, serious mental illness, and significant sensory impairments. Developed by an Expert Panel, the report concludes that current federal guidelines for assessing for MCI or dementia do not provide sufficient information to assess such adults.

 

The Panel recommended broadening federal guidance to include adaptations of assessment practices; expanding training for clinicians about such conditions; and undertaking research to produce more evidence-based information on assessing neuroatypical adults. 

 

For more information on the contents...

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The 126 pp report, ‘Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel,’ can be accessed and downloaded by clicking on the cover image

To access published version:  Janicki, M.P., Hendrix, J.A., & McCallion P., Examining Older Adults with Neuroatypical Conditions For MCI/Dementia: Barriers and Recommendations of the Neuroatypical Conditions Expert Consultative Panel. Alzheimer's Dement. 2022:14(1); e12335; https://doi.org/10.1002/dad2.12335.

Support the NTG by becoming a dues paying member.

NTG members receive exclusive benefits...  including discounted workshop and webinar registrations, networking opportunities, and much more.  Click on the link above for more information and to join online.

Individuals - $50 annual dues

Student/Retiree/Family Member - $25 annual dues

Organizational Memberships Also Available!

Online
Family Caregiver
Support Group

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The NTG offers a free monthly online support group for family members caring for an adult relative with ID and dementia.  The support group meets the first Thursday of the month at 8 pm Eastern Time. 

For more information.

New Video on Early-Onset Alzheimer's and Down Dyndrome

NTG has paired up with Positive Exposure and created a new educational video, 'Early Onset Alzheimer's Disease in Adults with Down Syndrome'. Underwritten by a modest grant from the WITH Foundation, the video visits several family members who share with us their thoughts about their son or daughter's life and symptoms of early onset dementia.  This 10.5 minute video Is now available. Click on the photo below...

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Biomarkers reveal early evolution of Alzheimer's in Down Syndrome