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National Task Group on Intellectual Disabilities and Dementia Practices
What are we?
The ‘NTG’ is a coalition of interested persons and organizations working toward ensuring that the needs and interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and related dementia – as well as their families and friends – are taken into account as part of the National Plan to Address Alzheimer’s Disease.
The NTG is composed of families, association and organization representatives, practitioners, academics, and others who contribute time and effort to its activities. The NTG is supported by the American Academy of Developmental Medicine and Dentistry and the Gerontology Division of the American Association on Intellectual and Developmental Disabilities, along with the Rehabilitation Research and Training Center on Aging with Developmental Disabilities-Lifespan Health and Function at the University of Illinois at Chicago and the Center on Excellence in Aging at the University at Albany.
An invitation to affiliate with the NTG is open. If you are interested in contributing to this effort, you can register as a contributing member or NTG friend at this site. For questions, please contact either Seth Keller, M.D. (American Academy of Developmental Medicine and Dentistry) at email@example.com or Matthew Janicki, Ph.D. (University of Illinois at Chicago) at firstname.lastname@example.org.
The NTG is working to underpin the National Plan to Address Alzheimer’s Disease, and is represented by members at the quarterly meetings of the federal Advisory Council on Alzheimer’s Research, Care, and Services.
To read the NTG's latest update of activities.
The chairs of the NTG are Dr. Seth M. Keller and Dr. Matthew P. Janicki
NTG Announces its 2014 Princeton Conference on Intellectual Disabilities and Dementia
The National Task Group will be holding a national conference on dementia and intellectual disabilities on June 17 and 18, 2014 in Princeton, New Jersey. The conference will be a cooperative endeavor that will include the NTG, the new RRTC on Developmental Disabilities and Health at the University of Illinois at Chicago, the American Academy of Developmental Medicine and Dentistry, Special Olympics, and a range of state and national organizations, university centers, and consumer advocacy groups.
Thematically, the conference will be designed to inform on current practices and set the tone for events and activities to come related to the aims of the National Plan to Address Alzheimer's Disease and the NTG's Action Plan. The conference will involve key federal and national organization officials in plenary sessions, as well as be composed of individual presentations within several tracks. The conference will also be the site for the launch of the NTG's forthcoming national training and education curriculum on intellectual disabilities and dementia and the launch of CARF's new standards for programs serving people with intellectual disabilities and dementia. Several training workshops will be held on June 16 relative to these launches.
For more infomation visit http://aadmd.org/ntg/2014-ntg-princeton-conference
A Powerpoint slide announcing the conference is available here.
NTG's New Efforts to Develop a Training Curriculum on Dementia and Intellectual Disabilities and Establish Program Standards for Dementia-Related Services
The NTG has created a new Group T - for training - and has organized several work groups to help us create a standardized education and training curriculum on dementia and intellectual disabilities. Our new Group T is working toward helping address the provision in the 2013 Update of the National Plan to Address Alzheimer’s Disease which calls for the "Development of a curriculum on Alzheimer's disease for primary care practitioners so that providers have the necessary skills to provide high-quality dementia care". The NTG’s goal is to have the working group address this aspect with respect to environments that serve adults with intellectual and developmental disabilities. The working group has begun its work and held a development meeting in Ft. Lauderdale, Florida, on July 30-31. A second development meeting is scheduled for April 29/30 in Philadelphia, Pennsylvania. The goal of the Group is have a copy of the curriculum ready for field-testing by the NTG's conference in Princeton, New Jersey on June 16-18, 2014.
In addition, the RRTC on Developmental Disabilities and Health at the University of Illinois at Chicago has partnered with the AADMD to provide support to the implementation of training and education in areas of health, which will correspond with the use of the NTG's new national curriculum.
The NTG has been working with CARF International to establish a set of program standards for accrediting dementia-related services serving persons with intellectual and developmental disabilities. As part of this process, in January 2013, CARF convened an International Standards Advisory Committee (ISAC) in collaboration with the NTG to address needs related to standards for individuals with I/DD and co-occurring dementia. The ISAC included diverse service providers in the aging and community services fields as well as family caregivers. Prior to the ISAC, a CARF webinar provided a briefing on key issues and some of the standards that would be addressed. At the meeting, ISAC participants identified practices that can be implemented by service providers to promote quality of care for individuals with I/DD and dementia. In the fall of 2013, the CARF issued a White Paper as an interim step to the development of the formal standards ("Living longer, living better: Improving service quality and supports for persons with ID/DD and dementia"). Following further internal work, the CARF completed its work on the first-cut of the standards and plans to have them go in to effect in mid-2014. To access a copy of the final draft.
The NTG is pleased to see a number of collaborative demonstration projects being undertaken as a result of its encouragement and technical assistance. One in particular is a collaboration between a geriatric education center (in this case, one at Nova Southeastern University) and a local service agency (the Lucanus Center) in Broward County, Florida, that has resulted in the development of a new assessment clinic for adults with intellectual disabilities. The local medical school, based at Nova Southeastern University, is also part of this clinic. The clinic is assessing adults with intellectual and developmental disabilities for sensory impairments, mobility difficulties, and cognitive changes. This collaborative effort has received the support of Director Barbara Palmer of Florida's Agency for Persons with Disabilities. The Lucanus Center has also instituted a screening program (using the NTG's early detection and screening instrument) to look for early signs of MCI and dementia in their clientele. The effort is jointly managed by Dr Thomas Buckley, a member of the NTG and senior administrator at Lucanus, and Dr. Cecelia Rokusek, the head of the GEC at NSU. Information on this demonstration can be obtained from Dr Buckley at email@example.com.
Products of the NTG
- 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports (PDF)
- 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports – Executive Summary (PDF)
- 'Dimentica la disabilità e guarda alla persona': Una strategia nazionale per permettere agli adulti con Disabilità Intellettiva affetti da Demenza, di rimanere nella propria Comunità, ricevendo sostegni di qualità (PDF) [Italian version of 'Thinker document']
- Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (Booklet version) (PDF)
- Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (Journal version)
- NTG-Early Detection Screen for Dementia - English (PDF)
- NTG-Early Detection Screen for Dementia - Dutch (PDF)
- NTG-Early Detection Screen for Dementia - French (PDF)
- Le GTN-Outil de dépistage précoce de la démence (PDF)
- NTG-Early Detection Screen for Dementia - German (PDF)
- NTG-Early Detection Screen for Dementia - Greek (PDF)
- NTG-Early Detection Screen for Dementia - Italian (PDF)
- L'NTG-Screening precoce per la Demenza (PDF)
- NTG-Early Detection Screen for Dementia - Spanish (PDF)
- El NTG- Detección temprana de la demencia (PDF)
- Manual: NTG-EDSD [English] - PDF
- Manuel: ODPD-GTN [Français] - PDF
- The National Task Group on Intellectual Disabilities and Dementia Practices Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disabilities (PDF)
- Frequently Asked Questions (PDF)
- NTG Brochure (PDF)
The NTG’s Educational Activities
The NTG is engaging in an awareness campaign that involves a series of national and regional workshops and Webinar series, and distribution of public education materials. The NTG has organized workshops on the topic of dementia and intellectual disabilities (in 2012, workshops were held in Phoenix, Charlotte, Los Angeles, New Brunswick [NJ], and Chicago). In 2013 workshops were held in Ontario, Canada, Bangor (ME), Victoria and Prince George (BC) and several other locations. In 2014 a number of workshops will be held including Nashville (TN) and several other locations. NTG members are also involved in special presentations at the annual meetings of various national associations and organizations. The 2014 workshop schedule is available here.
A program of educational Webinars was held in both March and May, 2013. Another series in planned for the latter part of 2014. For the 2014 Webinar schedule click here.
The NTG also has a set of FAQs and a promotional brochure that promote awareness of dementia and of the activities of the NTG. NTG members have helped create informational materials that are being distributed by other organizations, such as the NDSS. Several educational videos (running about 20 minutes each) have also been posted on YouTube:
Dementia and People With Intellectual Disabilities: http://youtu.be/wrKLURsAy6Y
When People With Developmental Disabilities Age: http://youtu.be/MEtkmI2xEG8
Persons and organizations interested in organizing day-long or mini-workshops on dementia and intellectual disabilities conducted by the NTG can contact the NTG for further information. Contact Seth Keller (firstname.lastname@example.org) or Matthew Janicki (email@example.com).
NTG Current Activities
The NTG is seeking volunteers to aid with its educational efforts. If you are interested in helping make contact with various organizations or participating in educational events, please contact Dr. Seth Keller.
Members of the NTG will be discussing the NTG’s efforts during 2014 at the following events:
4th IASSIDD Europe Congress, Vienna, Austria (July)
Background and History of the NTG
To read about the background and history of the NTG visit this page.
The Governance of the NTG
The NTG is managed by a steering committee composed of the following NTG members:
Matthew P. Janicki, Ph.D. (Co-chair)
Seth M. Keller, M.D. (Co-chair)
Kathie Bishop, Melissa Disipio, Lucy Esralew, Lawrence T. Force, Mary Hogan, Nancy Jokinen, Ronald Lucchino, Philip McCallion, Julie Moran, Dawna Torres Mughal, Leone Murphy, Lin Nelson, Kathryn Pears, Mike Rafii, Nahib Ramadan, Kathy Service, Baldev Singh, Kathy Srsic-Stoehr, Sara Weir
A full membership list is available here.