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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 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 AAIDD.
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 firstname.lastname@example.org or Matthew Janicki, Ph.D. (University of Illinois at Chicago) at email@example.com.
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.
Please read the NTG's latest update of activities.
The chairs of the NTG are Dr. Seth M. Keller and Dr. Matthew P. Janicki.
The National Task Group held its first National Conference on Dementia and Intellectual Disabilities on June 17 and 18, 2014 in Princeton, New Jersey. The conference was a cooperative endeavor among the NTG, the 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. A listing of the presentations offered at the conference may be accessed here: 2014 Program.
The 2015 Conference will be held in Los Angeles, California July 2015. Final dates and more information will be posted and sent out as soon as it is available.
NTG's New Efforts to Develop a Training Curriculum on Dementia and Intellectual Disabilities and Establish Program Standards for Dementia-Related Services
The NTG’s Group T - for training has created a standardized education and training curriculum on dementia and intellectual disabilities. Group T was 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 working group began its work and held a development meeting in Ft. Lauderdale, Florida, on July 30-31, 2013 and a second development meeting on April 30/May 1 in Philadelphia, Pennsylvania. The curriculum is currently being field-tested is scheduled to be available in late 2014. Members interested in aiding the Group T efforts may send an email to Kathryn Pears (firstname.lastname@example.org) or Kathie Bishop (email@example.com), the Group T co-leaders.
Guidelines for Community Living
The NTG has created at Group G – for group homes – and has charged this working group with developing guidelines for community living settings serving people with intellectual disabilities affected by dementia. The Group G leaders are Dr. Nancy Jokinen (firstname.lastname@example.org) and Dr. Thomas Buckley (email@example.com). NTG members interested in being part of, or aiding, Group G may send an email to either Group G leader and express their interest. The Group will be working over the fall of 2014 with an expected draft product available for review in late 2014.
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 firstname.lastname@example.org.
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)
- NTG-Early Detection Screen for Dementia - Japanese Version (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 were 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 is planned for 2015. For the 2015 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 (email@example.com) or Matthew Janicki (firstname.lastname@example.org).
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 discussed the NTG’s efforts during 2014 at the following events:
2014 AAIDD National Conference, Orlando, Florida (June)
4th IASSIDD Europe Congress, Vienna, Austria (July)
2014 Annual Conference of the American Psychological Association, Washington, DC (August)
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.