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National Task Group on Intellectual Disabilities and Dementia Practices

The Rehabilitation Research and Training Center on Aging with Developmental Disabilities-Lifespan Health and Function at the University of Illinois at Chicago has partnered with the American Association on Intellectual and Developmental Disabilities, the American Academy of Developmental Medicine and Dentistry to support the National Task Group (NTG) on Intellectual
Disabilities and Dementia Practices. The NTG is co-chaired by Dr. Matthew P. Janicki ([email protected]) of the RRTC and Dr. Seth Keller, the President of the AADMD ([email protected]).

In early 2011, the President signed the National Alzheimer's Project Act (NAPA) which is expected to lead to the development of a coherent and coordinated national strategy on dealing with Alzheimer's disease in the United States. The National Task Group on Intellectual Disabilities and Dementia Practices was created to complement this federal initiative and to address the myriad requests for more specific information and practice models for providing quality care for people with intellectual disabilities affected by dementia. As one of its efforts, the National Task Group is working to feed into the NAPA effort and ensure that the concerns and needs of people with intellectual disabilities and their families, when affected by dementia, are considered as part of this national strategy.

The overall goal of the NTG is to review and update the technological and clinical practices used by agencies in delivering supports and services to adults with ID affected by various dementias. The Task Group has been working to: (1) Suggest a workable screening instrument that will help substantiate suspicions of dementia-related decline; (2) Produce a new set of practice guidelines for post-determination health care and supports; and (3) Examine and recommend models of community-based support and long term care for persons with ID affected by dementia.

As part of its work, the Task Group has held two plenary meetings. The first, in conjunction with the 2011 AAIDD Conference, was held in St. Paul, Minnesota on June 6, 2011. The members of the National Task Group spent the day working to build consensus on the Group's work and products. Each of the working groups presented their reports, which contained draft documents reflecting the group's work. Consensus was achieved on the work done by each group and a general discussion helped set the tone for the NTG’s further efforts. It was decided to produce a general summative report and other products noted above. The second meeting was held on November 8, 2011 in Arlington, Virginia in conjunction with the annual AUCD Conference

The National Task Group is organized around several working groups. 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 looking for cognitive and functional decline in aging adults with ID. The health care supports group is in the process of developing a process for follow-up if decline is suspected and outcome measures to assess treatment outcomes when medical therapies are employed. The community supports group is developing a document that will recommend models of long-term formal and informal support and 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.

The NTG has produced a summative report detailing the issues facing adults with intellectual disabilities and dementia, as well as their families and caregivers, and produced a National Action Plan on Dementia and Intellectual Disabilities.
“'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” contains background information as well as formative suggestions to address this growing challenge in the United States.

In addition, work has begun on several sets of practice guidelines, both for health and social care. The NTG is also organizing a series of workshops. The schedule is available at The NTG wants to be sure that all issues and needs affecting aging adults with intellectual disabilities (and their families and careers) affected by dementia are on the table. We welcome any suggestions and recommendations for further activities.

As the work of the NTG will continue into 2012, an invitation to affiliate with the NTG is still open. Persons interested in contributing to this effort should get in touch with either Matthew Janicki, Ph.D. (University of Illinois at Chicago) at
[email protected], or Seth Keller, M.D. (President, American Academy of Developmental Medicine and Dentistry) at [email protected].