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.

 


“I can think of no other disease that has such a profound effect on loss of function, loss of independence, and the need for care. I can think of no other disease so deeply dreaded by anyone who wants to age gracefully and with dignity. I can think of no other disease that places such a heavy burden on families, communities, and societies. I can think of no other disease where innovation, including breakthrough discoveries to develop a cure, is so badly needed.” 

          Dr Margaret Chan, Director-General of the World Health Organization, opening remarks at the First WHO Ministerial Conference on Global Action Against Dementia, Geneva, March 15. 2015 (Alzheimer’s Disease International/ADI,World Alzheimer’s Report,  2015).


 

NTG CONFERENCES AND EVENTS


>  Upcoming NTG Workshops:  For more information and to register online please visit our workshop page.

Queens, New York - September 18, 19, & 20, 2017

Providence, RI - October 18-19 & 20, 2017

Tallahassee, FL - October 23, 24, & 25, 2017

 

 

> Webinars 

Registration is now open for the NTG's 2017 Dementia-Capable Care of Adults with Intellectual Disability Webinar Series.  

To view the schedule please click here.

 

NTG members also are involved in webinars sponsored by various organizations

'Aging and Dementia Care for People with Intellectual Disabilities' - was presented on February 16, 2017 and sponsored by The Arc 

 Play recording (1 hr 4 min)    [Please open this in a browser other than Microsoft Edge]

   
> Special Trainings by NTG Senior Members

           See presentation on aging and dementia by Dr. Kathleen Bishop at The Arc Leadership Conference in St. Louis, Missouri

 

>  NDSS-NTG-National Alliance of Caregivers Conference

      SAVE THE DATE!!!

         Special conference for family caregivers of older adults with Down syndrome... for parents, siblings and other family members

         April 9-10, 2018 in Arlington, Virginia at the Westin Hotel

         Co-sponsored by the NDSS and NTG

         FMI:  contact the NTG at ntgfamilyadvocate@gmail.com

        

>  AADMD/NTG Conferences

The 5th annual conference of the NTG will be held on Friday, June 29, 2018, as part of the AADMD Conference (which will be held June 29-30 and July 1), but will have a distinct one-day registration.  The venue will be the Marriott Seattle Waterfront Hotel.  A NTG two-day dementia and intellectual disability workshop will be held on Tuesday and Wednesday, June 26th and 27th. and an NTG collaborative community forum on dementia and intellectual disability will be held on Thursday, June 28th.  More information on these events is forthcoming.

The  4th annual conference  was held  June 2-4, 2017  at the Cooley Center of the Dental School of the University of Texas-Houston on the campus of the Houston Medical Center in Houston, Texas.  For information go the main AADMD site.  The NTG hosted a plenary session on dementia and Down syndrome on Saturday, June 4th, with key speaker, Dr. Ann-Charlotte ("Lotta") Granholm-Bentley, the founding executive director of the Knoebel Institute for Healthy Aging at the University of Denver.  For abstracts of  the full program, which contains NTG related conference sessions.

The 3rd annual NTG conference was 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 abstracts of NTG conference sessions. 

Read about our previous conferences.
 

The NTG partnered with Dr. Karen Watchman and colleagues at the University of Stirling and the University of the West of Scotland and conducted an 'international summit' on intellectual disability and dementia that was held on October 13-14, 2016 in Glasgow, Scotland.  For more information and to review copies of the Summit reports.

 

>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, as well as specialty workshops (e.g,.Screening, Assessment & NTG-EDSD).  For information and the complete schedule.  Contact Dr. Kathie Bishop for scheduling a workshop.

 

>Upcoming NTG Related Events

tba

 

NATIONAL ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

NTG Public Comments

April 29, 2016                August 1, 2016               October 31, 2016                  February 3, 2017

NOte: no comments were provided at the Apirl 17, 2017 NAPA Council meeting

 

FAMILY SUPPORT NETWORK

 

NOW AVAILABLE - CAREGIVER NEWS - Vol 1, No 3

CAREGIVER NEWS - Vol 1, No 2

CAREGIVER NEWS - Vol 1, N 1

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.

The NTG prodiuced a resource guide for caregivers of adults with intellectual disability and dementia for the Seven Hills Rhode Island organization. A copy of the guide can be viewed and downloaded here.

 

PENDING ACTIVITIES

> NTG and the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers

The NTG sponsored a pre-Summit activity on family caregiving in dementia and intellectual disability.  Prof. Tamar Heller of the University of Illinois at Chicago led a workgroup of prominent researchers in the area of family caregiving and intellectual disability and they developed a background paper on caregiver practices and supports to be used at the Summit.  The workgroup report is available here. The NIH Summit will be held on the NIH campus on October 16-17, 2017.   

> Building a network of NTG-EDSD users. FMI: Dr. Lucy Esralew

The NTG has set up a NTG-EDSD Users Group.  To receive an invitation to join the group, send an email to ntgedsd@aol.com and provide your name, affiliation, contact information, and interest in NTG-EDSD.  One item under discussion is whether any amendments are needed to the NTG-EDSDThe screening form has been in use for several years and several 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.  

> HCBS Settings Rule and Dementia Services

The NTG is in communication with CMS over interpretative aspects of the HCBS 'settings' rule as it applies to supports and services for persons with intellectual disability affected by dementia.  Many questions have arisen over State regulatory authority interpretations of the rule and its application to small dementia-capable group home settings.  Although CMS has not issued a definitive interpretation of the application of the 'settings' rule to these settings, it has issued various documents, FAQs, and interpretative letters applying to selective aspects of the 'setting' rule to dementia care supports that have application to intellectual disability.  The NTG has offered to provide a resource page listing existing CMS and related issuances so as to provide a resource to States and providers on this topic.  To see the current list of available CMS and related materials.

> Practice guidelines on in-community dementia residences

A working group, associated with the International Summit on Intellectual Disability and Dementia is developing a Summit statement and guidance on enabling quality residential environments for dementia supports (including group home and family home settings.  For information, go to www.aadmd.org/ntg..

> 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.

> Aid in recruitment for the national NIH funded biomarkers and Down syndrome study

The National Institutes of Health has funded at $37M study of Biomarkers of Alzheimer’s Disease in Adults with Down Syndrome Initiative.  The funding is helping support two research teams that will pool data and standardize procedures, increase sample size, and collectively analyze data that will be made widely available to the research community. One of the teams, headed up by Dr. Nicole Schupf, is composed of investigators from the Columbia University Medical Center in New York City, the Kennedy Krieger Institute/Johns Hopkins University in Baltimore, Massachusetts General Hospital/Harvard University in Boston, and the University of North Texas Health Science Center in Fort Worth. The teams will employ an array of biomarkers to identify and monitor Alzheimer’s-related brain and cognition changes in Down syndrome volunteers 25 and older. The NTG’s screening instrument - the NTG-EDSD – is one of instruments that will be used in the study. Once the recruitment materials clear the IRB process, the NTG will aid the Initiative with alerting families and others to the study and seeking their involvement as participants.  For more information.

> Informational booklet on Alzheimer's disease and Down syndrome

The NTG collaborated with the National Down Syndrome Society and the Alzheimer's Association and developed a booklet useful to parents and other caregivers on Alzheimer's disease and related dementias and Down syndrome.  The project team was led by Dr. Julie Moran of the NTG.  The project is coordinated by the NDSS and the booklet will be issued in late summer 2017. 

> DS-Connect

The NTG is in discussion with the NIH Down Syndrome Working Group's DS-Connect to see how the NTG network might be helpful to the DS-Connect registry effort.  FMI: DS-Connect

Revised 8/12/17

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, M.D. (Co-chairs); Kathleen Bishop, Ph.D., Thomas Buckley, Ed.D., Nicole Cadovius, Melissa Disipio, Lucille Esralew, Ph.D., Lawrence T. Force, Ph.D., Andrew Griffin, Ph.D., Eileen Herge, Ph.D., Mary Hogan, Nancy Jokinen, Ph.D., Ronald Lucchino, Ph.D., Philip McCallion, Ph.D., Julie Moran, D.O., Dawna Torres Mughal, Ph.D., Leone Murphy, Lin Nelson, Ph.D., Kathryn Pears, Rick Rader, M.D., Mike Rafii, M.D., Kathy Service, FNPBaldev Singh, M.D., Kathy Srsic-Stoehr, Helen Stepowany, and Sara Weir.

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

The NTG is an affiliate within the structure of the American Academy on Developmental Medicine and Dentistry (www.aadmd.org)

FIND US ON FACEBOOK

© 2007-2017 The American Academy of Developmental Medicine and Dentistry. All rights reserved.