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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 dementias – 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.
The chairs of the NTG are Dr. Seth M. Keller and Dr. Matthew P. Janicki.
The Administrative and Logistics Coordinator of the NTG is Nina Bennett.
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, Matthew Janicki, Ph.D. (University of Illinois at Chicago) at email@example.com, or Nina Bennett at firstname.lastname@example.org.
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Products of the NTG
To see a full list of products of the NTG, please click here.
NTG Educational Resources
The NTG has FAQ [Frequently Asked Questions], a bibliography of relevant articles and related literature, and a promotional brochure that promote awareness of dementia and of the activities of the NTG. Also NTG's members helped create informational materials that are being distributed by other organizations. These materials include:
• Living with Dementia [Down's Syndrome Scotland]
• What is Dementia [Down Syndrome Scotland]
• Dementia Care Themes (CARF)
• Keeping Talking About Dementia [Down's Syndrome Scotland]
Several of the NTG's principals were involved with the production educational videos (running about 20 minutes each) on aging and developmental disabilities and aging and dementia, which have been posted on YouTube. They can be accessed via the links below:
Dementia and People With Intellectual Disabilities: http://youtu.be/wrKLURsAy6Y
Down Syndrome and Dementia (Oak Grove Center) [5 min]: http://youtu.be/Clbg_j2o7tk
June 2016 Conference information to come!
Read about our 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 residential settings that support people with intellectual disabilities affected by dementia, including existing or specialty build small community homes operated by agencies as well as family homes. The Group G leaders are Dr. Nancy Jokinen (email@example.com), Dr. Thomas Buckley (firstname.lastname@example.org) and Dr. Matthew Janicki (email@example.com). The Group held a formative meeting in Vancouver, BC on October 3, 2014 with the support of Community Living British Columbia. A second meeting was held at the Lucanus Center in Ft. Lauderdale, FL on January 19-20, 2015. The guidelines are aimed at agencies developing and operating residential settings for persons affected by dementia and/or supporting families or other in-home carers who are providing dementia care to adults with an intellectual disability. The guidelines will describe various aspects related to dementia care provision and enhancing quality. NTG members interested in being part of, or aiding, Group G may send an email to the Group G leaders 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.
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 education events, please contact Dr. Seth Keller.
Members of the NTG discussed the NTG’s efforts 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)
2015 United Health Care and the National Association on Councils for Developmental Disabilities webinar (May)
2015 National Institutes on Aging meeting (May)
2015 Hawaii Division of Developmental Disabilities public forum (May)
2015 National Down Syndrome Society meeting in Seattle (June)
2015 Easter Seals webinar (June)
2015 AIDD Texas Chapter 40th Annual Convention (July)
2015 National Plan for Alzheimer's Disease and the National Alzheimer's Project Act meeting (July). Please read NTG Steering Committee member Mary Hogan's public testimony here.
2015 United Health Care Panel (September)
2015 Special Olympics Alaska Aging Athlete Conference (September)
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, Vanessa Quick, Rick Rader, Mike Rafii, Nahib Ramadan, Kathy Service, Baldev Singh, KathySrsic-Stoehr, Sara Weir
A full membership list, including Steering Committee members, is available here.