National Task Group on Intellectual Disabilities and Dementia Practices

 

WELCOME TO THE NTG

The ‘NTG’ is a coalition charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and related dementias – as well as their families and friends – are taken into account as part of the National Plan to Address Alzheimer’s Disease.

We produce materials related to dementia, including practice guidelines, screening tools, education and training curricula and workshops, agency and family-based information, and other technical materials – as well provide technical assistance.

The NTG is affiliated with the American Academy of Developmental Medicine and Dentistry and the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago and other partners, such as the Center on Excellence in Aging at the University at Albany and the Gerontology Division of the AAIDD.  Read more about us.

The NTG is a member of LEAD - 'Leaders Engaged on Alzheimer's Disease' - a Washington-based coalition working to focus attention on Alzheimer’s disease and related disorders.

The chairs of the NTG are Matthew P. Janicki, Ph.D. and Seth M. Keller, MD.

 

NTG CONFERENCES AND EVENTS
 

>AADMD/NTG 2016 Conference

The next annual NTG conference will be held July 8-10, 2016 at the Swissotel Chicago, Illinois, as part of the annual conference of the American Academy on Developmental Medicine and Dentistry. For conference registration, accommodations and program information.  For abstracts of NTG conference sessions.

Read about our previous conferences.
 

>International Summit on Dementia and Intellectual Disability

The NTG has partnered with the University of the West of Scotland to conduct an 'international summit' on intellectual disability and dementia that will be held October 13-14, 2016 in Glasgow, Scotland.  For more information.

 

>Project ECHO

The NTG has partnered with Project ECHO at the University of New Mexico to deliver specialized intellectual disability and dementia consultation to group homes and community providers in rural and underserved areas.  For more information.

 

>Education and Training Workshops

The NTG offers a national series of two- and three-day workshops on dementia and intellectual disability for staff of provider agencies, program personnel, administrators, and caregivers.  For information and the complete schedule.  Contact Dr. Kathie Bishop for scheduling a workshop.

 

FAMILY SUPPORT NETWORK

The NTG sponsors an on-line support group network for family caregivers which meets periodically.  To read more and to join in…

 

NTG PRODUCTS

The NTG has produced and issued a number of products and publications, including an universal early detection and screening instrument -- the NTG-EDSD.  For a complete list of various language versions and to download copies go here.

 

PENDING ACTIVITIES

> Updating the NTG-EDSD (2.0). FMI: Dr. Lucy Esralew

The NTG’s screening form has been in use for several years.  Users have offered some suggestions for changes and additions.  The NTG is evaluating the suggestions with the intent to issue a version 2.0.  One concern raised was the omission of height and weight data that can be used to determine BMI.   Users are advised to include these data when using the current version of the form.   The NTG has also set up a NTG-EDSD Users Group.  Information on joining the Group will be posted shortly.

> Practice guidelines on in-community dementia residences.  FMI: Prof. Nancy Jokinen

> Collaborating with the Down Syndrome Medical Interest Group (USA) Workgroup on 'Regression and Down Syndrome'

The Down Syndrome Medical Interest Group (USA) is investigating a phenomenon referred to as ‘regression’ in adolescents and young age adults with Down syndrome.  This phenomenon is characterized by unexplained rapid clinical deterioration in cognitive, adaptive and behavioral functioning.  Little is known about its etiology, but the phenomenon is troubling as it leads to loss of basic skills within a very short period (usually within six months), decompensation of function, and significant loss of speech.  Prior to onset, persons affected show little or no clinical symptoms.  [A recent article in the American Journal of Medical Genetics (Jacobs et al., 2016, AJMD, Part A 9999A:1-4) describes some of the aspects of this phenomenon and proposes a model for a systematic approach for evaluating affected individuals.]  The NTG has been in discussions with the Regression Workgroup of the DS MED IG about whether any of persons affected may have a form of early onset dementia.  Dr. Brian Chicoine is the leader of the Workgroup.

> Connect with new national NIH funded biomarkers and Down syndrome study

 

NTG GOVERNANCE

The NTG is managed by a steering committee composed of the following NTG members: Matthew P. Janicki, Ph.D. and Seth M. Keller, MD. (Co-chairs); Kathleen Bishop, Thomas Buckley, Nicole Cadovius, Melissa Disipio, Lucille Esralew, Lawrence T. Force, Andrew Griffin, Mary Hogan, Nancy Jokinen, Ronald Lucchino, Philip McCallion, Julie Moran, Dawna Torres Mughal, Leone Murphy, Lin Nelson, Kathryn Pears, Vanessa Quick, Rick Rader, Mike RafiiNahib Ramadan, Kathy Service, Baldev Singh, KathySrsic-Stoehr, Helen Stepowany, Sara Weir

Nina Bennett serves as the NTG Administrative and Logistics Coordinator

A full membership list, including Steering Committee members, is available here.

 

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