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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.
NTG CONFERENCES AND EVENTS
> Upcoming NTG Workshops
> Fall Webinar Series
Registration will soon open for the NTG's Spring 2017 Dementia-Capable Care of Adults with Intellectual Disability Webinar Series. Schedule for 2017 to be posted shortly.
To view the schedule please click here.
> AADMD/NTG Conferences
The 4th annual conference will be 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 the Call for Papers go the AADMD site. Papers and posters on topics related to dementia and intellectual disability are most welcome.
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.
>International Summit on Dementia and Intellectual Disability
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.
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
April 27, 2017: "Neurologic Complications in Adults with Down Syndrome" - Workshop at the 69th Annual Meeting of the American Academy of Neurology, Boston, Massachusetts [NTG speaker: Dr. Seth Keller]
July 21, 2017: "Decline in Adults with Down Syndrome: Assessment and Care Considerations " - Presentation at the 2017 Down Syndrome Medical Interest Group-USA (DSMIG-USA) Annual Symposium, Sacramento, California [NTG speakers: Dr. Seth Keller, Ms. Kathy Service]
NATIONAL ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
NTG Public Comments
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…
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.
> NTG and the NIH Summit on Dementia Care and Services Research
The NTG has received recognition to hold a pre-Summit activity on family caregiving in dementia and intellectual disability. Prof. Tamar Heller of the University of Illinois at Chicago is leading a workgroup of prominent researchers in the area of family caregiving and intellectual disability in order to develop a background paper on caregiver practices and supports to be used at the Summit. The workgroup is scheduled to submit its report in April 2017. THe NIH Summit will be held at NIH 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 firstname.lastname@example.org 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-EDSD. The 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 led by Prof. Nancy Jokinen, Kathy Service, and Nicole Cadovius is developing the guidelines and expects to have a public draft by late fall. Information on the guidelines, which will lay out processes for developing and managing dementia-capable group homes and providing assistance to family caregivers, can be obtained from Prof. Jokinen. The working group welcomes any and all contributions to the working draft.
> 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 new 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 is collaborating with the National Down Syndrome Society and the Alzheimer's Association on the development of a booklet useful to parents and other caregivers on Alzheimer's disease and related dementias and Down syndrome. The project team is lead by Dr. Julie Moran of the NTG. The project is being coordinated by the NDSS by Vanessa Quick. It is planned to complete the booklet by early 2017 for its official launch as part of World Down Syndrome Day on March 21st in New York at the United Nations.
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
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., 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, MPPM, Vanessa Quick, Rick Rader, M.D., Mike Rafii, M.D., Kathy Service, FNP, Baldev 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)
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