National Task Group Working Groups

The National Task Group on Intellectual Disabilities and Dementia Practices is a collaborative effort of the American Academy of Developmental Medicine and Dentistry, the University of Illinois at Chicago's RRTC on Aging and Developmental Disabilities - Lifespan Health and Function, and the American Association on Intellectual and Developmental Disabilities.

The National Task Group is organized around several working groups:

  • The education and training group is in the process of developing a national staff development curriculum and training pack on dementia and intellectual and developmental disabilities that would be usable by providers and organizations for orienting entry staff, for continuing education of existing personnel, and for training specialty staff who work in dementia-capable programs.

    For more information about this group visit

    Group Leaders: Kathleen Bishop, Ph.D., Kathryn Pears, MPPM

  • The dementia screening group reviewed a number of existing assessment instruments and has recommended a dementia-behavior related screening instrument which could be used by providers for looking for cognitive and functional decline in adults with ID who are aging. It is currently assessing the use of one particular screening instrument and is carrying out a pilot on its use nationally.

    Group Leader: Lucy Esralew, Ph.D.

  • The health care supports group is in the process of developing practice guidelines and informational packets to help health practitioners follow a process if decline is suspected and assess treatment outcomes when medical therapies are employed. It is also producing practice guidelines on health-related social care practices.

    Group Leader: Seth M. Keller, M.D.

  • The community supports group is developing a document that will recommend models of informal and formal support and care that can offer long term care in community settings, including continued aging in family homes, specialized support in 'dementia capable' group homes, and aging in place supports during early stage care. There is also a group that is exploring training and education opportunities.

    Group Leaders: Larry Force, Ph.D., Nancy Jokinen, Ph.D.

  • The advocacy group has worked diligently to insure that individuals with IDD, especially those with Down syndrome, were included in the National Plan for Alzheimer’s disease. The group will closely monitor the soon to be established HHS Task Group which will focus on populations disproportionately impacted by dementia, including those with Down syndrome. The Advocacy Group works collaboratively with Healthcare, Screening and Community Support Groups to educate and train families as they formulate long term plans with a focus on best practices for aging with IDD.

    Group Leaders: Mary Hogan, Leone Murphy

  • 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 (, Dr. Thomas Buckley ( and Dr. Matthew Janicki (  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.

    Group Leaders: Dr. Nancy Jokinen (, Dr. Thomas Buckley ( and Dr. Matthew Janicki (  


  • Friends of the NTG

    This group is composed of those who have an interest in the efforts of the NTG and would like to be receive updates, infoblasts, invitations to educational activities but at this time do not wish to be actively involved in participating in specific work group work. Providing comments and recommendations is still always recommended and appreciated. A “Friend” can always decide later to become a work group member.

To join one or more of the task groups, visit the National Task Group signup page.

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