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Welcome to The NTG

The NTG is a not-for-profit organization charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and other causes of dementia - as well as their families and friends – are taken into account.

Our mission is to advocate for services and supports for people with intellectual disability who are affected by Alzheimer’s disease and dementias and for their families.

Confrères

NTG News

ID and Dementia Online Workshop - Registration Open

Registration is now open for the next NTG ID and Dementia online workshop.  This is the online version of the NTG's highly acclaimed two-day in-person workshop.  The workshop is comprised of four half-day (3 1/2 hour) sessions on March 11, 13, 18 & 19.  For those wishing to become NTG Affiliated Regional Trainers there is an additional fifth half day on March 25th. 

For more information and to register please visit our USA workshop page.

New Webinar Series for Families... on Aging, Dementia & ID

Free Family

Webinar Series

Session 1: The Aging Process was held on February 27th.  See link below to listen to the recording.

Upcoming Sessions:

March 12:  Early Screening for Cognitive Changes

March 26:  Life Planning for Different Phases of the Life Journey

April 9:  Behavioral Changes that Occur with Aging and Dementia

April 23:  Family Panel - Sharing Personal Experiences

The NTG's Family Support Program is providing an informative webinar series on dementia and intellectual disabilities starting on February 27, 2024. The series provides key information for families, people with intellectual disability, and others within their support networks, concerned about this aging-associated topic. The webinars are offered at no cost.

 

NTG and LuMind IDSC Issue Advisory on Prescribing Criteria for Alzheimer's Therapeutics

The NTG, the LuMind IDSC Foundation, and an international blue ribbon expert panel produced an advisory on adapting drug formulary committed criteria by States so that adults with Down syndrome (and other intellectual disabilities) can be prescribed FDA approved Alzheimer's disease anti-amyloid immunotherapeutics, once they are authorized for use by adults with Down syndrome.

NTG Welcomes the Support of the Peter J. Taylor Charitable Trust

The NTG is pleased to recognize the generous support of the Peter J. Taylor Charitable Trust in support of its family assistance and information efforts. New initiatives are underway to expand our focus on supporting families, which include maintaining an on-line monthly support group for caregivers, a new series of informative webinars, and increased involvement in producing family-friendly materials.

NTG Submits Recommendations to NIA/AA on New Alzheimer's Disease Clinical Guidelines

The National Institute on Aging and the Alzheimer’s Association (NIA-AA) draft diagnostic guideline on diagnosing Alzheimer’s disease was issued at the 2023 AAIC Conference in Amsterdam, NL, with a request for comments. The NTG submitted comments that lauded the work of the NIA/AA and proposed that the guideline offer more attention to diagnosing Alzheimer's disease in adults with intellectual disabilities and furthering research on biomarkers in adults with other than Down syndrome. To see an Explainer.  A subsequent, revised, version was issued by the Alzheimer's Association at the Clinical Trials on Alzheimer's Disease (CTAD) conference on Oct. 25, 2023, with a call for further comments. The LuMind IDSC Foundation and the NTG submitted a joint comment. To see Nov. 16th submission.

NTG Has Completed Work with the Gerontological Society of America to Create a 'Companion' on Intellectual Disability and Dementia to its KAER Toolkit

The NTG, provider organizations in Ohio, and the GSA are collaborating in producing a first companion to the GSA's renown KAER Toolkit. The new companion, previewed at the GSA's November Conference in Tampa FL, specifically focuses on issues relevant to intellectual disability and dementia, providing guidance for health workers, support personnel, and caregivers. The companion will be accompanied by various media products making the information more available to a broader audience.  Its release is poised for February 2024.

NTG Issues Advisory on Settings Rule and Dementia Housing

The NTG has issued a public policy advisory on applications of the CMS 'Settings Rule; with applications to community-based housing for adults with intellectual disability living with dementia. The advisory covers that adaptations agencies could use to provide HCBS supports in small dementia capable group homes and designing person-centered care plans.

NTG Issues Advisory on Over-medication

The NTG, jointly with the Health Matters Program at the University of Illinois Chicago, issued an advisory on risk reduction and brain health by moderating over-medication among adults with intellectual disability. The advisory, designed to promote healthy brain outcomes, recognizes that over-medicating can have negative effects on physical and brain health, as well as potentially can increase the risk for mild cognitive impairment or dementia. The information provided is intended to lead to a constructive scrutiny of medication use, avoid “medication harm’, and result in positive health outcomes.

Project ECHO Series on Dementia and Intellectual Disability

NTG and URI/VCU have announced the plan for their 2024 ECHO Series, which will begin this Spring on April 22nd. This annual ECHO series is offered twice a year, is free, and is a practical, case-based /education program for health care and social service providers who want to enhance their knowledge, capabilities, and performance related to the care of people with intellectual and developmental disabilities affected by dementia. The ECHO partners have issued a look-back at the past four years of their program. Information on the look-back and the '24 Spring series can be found on the ECHO page.

ID & Dementia Project in Texas!

The NTG has partnered with the University of Texas Health Science Center at Houston to undertake a five-year project funded by the Texas Council on Developmental Disabilities to expand awareness and services for adults with intellectual disability living with dementia.  See the project website for current and pending events and activities.

NTG Involved in 2nd International Summit on ID and Dementia

The NTG was a partner in the recently held 2nd International Summit on Intellectual Disabilities and Dementia, held on October 24-25, 2023 in Toronto, Ontario Canada. The Summit was part of the 50th Anniversary Celebration of the Reena Organization.  Reports from the Summit will be forthcoming and noted on the NTG website. One outcome from the Summit was the founding of the Summit Secretariat, which will be hosted by the NTG.

Upcoming Trainings and Workshops
NTG and LuMind IDSC Issue Advisory on Prescribing Criteria for Alzheimer's Therapeutics

The NTG, the LuMind IDSC Foundation, and an international blue ribbon expert panel produced an advisory on adapting drug formulary committed criteria by States so that adults with Down syndrome (and other intellectual disabilities) can be prescribed FDA approved Alzheimer's disease anti-amyloid immunotherapeutics, once they are authorized for use by adults with Down syndrome.

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U.S. Workshops

Workshop schedule for 2023 to-date is posted! Check on upcoming workshops.

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Canadian Workshops

Workshop schedule for 2024... Now, on January 9-10th in Kitchener, Ontario! Check for more information.

ECHO Education Series

ID and Dementia Texas ECHO

Moving Knowledge - Not People

3rd Wednesday of every month 

NTG Training & Education

The NTG offers training workshops on intellectual disability and dementia, in the US and Canada. These renowned workshops are based on the NTG's evidence-informed curriculum modules on various topics related to intellectual disability and dementia. 

NTG's ECHO education series is a free, practical, case-based education program for health care and social service providers who want to enhance their knowledge, capabilities, and performance related to the care of people with intellectual and developmental disabilities affected by dementia.

Convention
Image by Samantha Borges

NTG Family Support

Image by Nathan Anderson
Image by Centre for Ageing Better

The NTG is committed to family caregivers, as well as direct service professionals, who support individuals with intellectual disability and dementia. We recognize that many family members provide direct, day-to-day care to their loved one, while others are involved indirectly. No matter how you provide care, the work we do is in support of all family caregivers.

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. 

NTG Training & Education

Publications Library

Looking for information on dementia and various conditions, such as autism or cerebral palsy? What about regression syndrome and Down syndrome?

We maintain information pages, offering summaries of recent research, covering these and other related topics. Go to our full library to filter into categories that interest you.

Featured Publications

click on image to open PDF

My Thinker's Not Working

My Thinker's Not Working

Resource document

Physician's Quick Guide for Using the NTG-EDSD

Physician's Quick Guide for Using the NTG-EDSD

Resource document

Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel

Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel

Resource document

FAQ on Dementia and ID

FAQ on Dementia and ID

Resource document

Community Care and Supports for People with Intellectual Disabilities Affected by Dementia

Community Care and Supports for People with Intellectual Disabilities Affected by Dementia

Resource document