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National Task Group on Intellectual Disabilities and Dementia Practices
What are we?
The ‘NTG’ is a coalition of individuals 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. Members are 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.
The NTG works 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 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 NTG has produced practice guidelines, screening tools, informational materials, and a national training and education curriculum among its many products.
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.
Please read the NTG's latest update of activities.
The chairs of the NTG are Dr. Seth M. Keller and Dr. Matthew P. Janicki.
Abstract submission is now open for the NTG Track at the Global Summit on Innovations in Health and IDD
The NTG is inviting submissions of free papers, posters, and symposia on topics related to dementia, mild cognitive impairment, and cognitive decline – focusing on screening, assessment, diagnosis; epidemiology and demographics, interventions and treatment, health issues; family supports; housing; end-of-life care; innovations in care of early and mid-stage and advanced dementia, as well as other related areas. Submit abstracts via the AADMD conference submission process (www.aadmd.org).
Deadline for abstracts is March 16, 2015.
For consultation on abstracts, contact Nina Bennett -- NinaBennettNTG@gmail.com
For previous conferences.
NTG Education and Training Curriculum
The NTG has developed a new multipurpose universal education and training curriculum on dementia and intellectual disability ideally suited for use with enhancing workforce skills in various sectors. The curriculum was developed to address the National Plan to Address Alzheimer's Disease's call for enhancing workforce skills to provide high-quality dementia care. The NTG Education and Training Curriculum on Dementia and Intellectual & Developmental Disabilities is the basis for Dementia Capable Care of Adults with Intellectual Disability (ID) and Dementia, a two-day workshop targeted for direct services personnel who work with or provide primary supports for adults with intellectual disability affected by dementia, as well as family caregivers. For a listing of scheduled workshop as well as for more information on the NTG's workshop series and other education offerings, click here.
Guidelines for Community Living
The NTG's Group G is currently developing guidelines for community living settings serving people with intellectual disabilities affected by dementia. The Group G leaders are Dr. Nancy Jokinen (email@example.com) and Dr. Thomas Buckley (firstname.lastname@example.org). The Group held a formative meeting in Vancouver, BC on October 3, 2014 with the help of Community Living British Columbia. A second meeting was held in Ft. Lauderdale, FL on January 19-20, 2015. The guidelines are aimed at agencies developing and operating care settings for persons affected by dementia and will define personnel, operational, and environmental aspects. NTG members interested in being part of, or aiding, Group G may send an email to either Group G leader and express their interest. Expectations are that the guidelines will be available by July 2015. For more information, click here.
The NTG is pleased to see a number of collaborative demonstration projects being undertaken as a result of its encouragement and technical assistance. Such projects include innovations in program or support provision, assessment or diagnosis, and educational endeavors. For examples of some on-going efforts, click here.
Products of the NTG
To see a full list of products of the NTG, please click here.
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)
Nina Bennett (Administrative and Logistics Coordinator)
Kathie Bishop, Thomas Buckley, Nicole Cadovius, Melissa Disipio, Lucy Esralew, Lawrence T. Force, Andrew Griffin, 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, including Steering Committee members, is available here.