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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 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 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.
The chairs of the NTG are Dr. Seth M. Keller and Dr. Matthew P. Janicki
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 - German (PDF)
- NTG-Early Detection Screen for Dementia - Italian (PDF)
- NTG-Early Detection Screen for Dementia - Greek (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) - Available soon
- Frequently Asked Questions (PDF)
- NTG Brochure (PDF)
The NTG’s Educational Activitie
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 have been held or are planned for Ontario, Canada, Bangor (ME), Richmond (VA), Baltimore (MD), Prince George (BC) and several other locations. NTG members are also involved in special presentations at the annual meetings of various national associations and organizations. The 2013 workshop schedule is available here.
A program of educational Webinars was run in March 2013 and will also run in May, 2013. For the Webinar schedule click here.
The NTG also has a promotional brochure and set of FAQs that promote awareness of dementia and of the activities of the NTG. NTG members have helped create informational materials that are being distributed both other organizations, such as the NDSS.
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 Dr. Keller (firstname.lastname@example.org) or Dr. 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 2013 at the following events:
AAIDD Texas Chapter Conference, Houston, Texas (July)
2013 Conference of AAIC, Boston, Massachusetts (July)
Annual Conference of The Arc, Seattle, Washington (August)
Congresso Internazionale La Sindrome di Down, Rome, Italy (November)
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, Mike Rafii, Nahib Ramadan, Kathleen Service, Baldev Singh, Kathy Srsic-Stoehr, Sara Weir
A full membership list is posted on this site.