National Task Group on Intellectual Disabilities and Dementia Practices

Colleagues,

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. 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, the American Association on Intellectual and Developmental Disabilities, the American Academy of Developmental Medicine and Dentistry, 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, have combined their efforts and created the National Task Group on Intellectual Disabilities and Dementia Practices. 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 this initiative is to review and update the technological and clinical practices used by agencies in delivering supports and services to adults with ID affected the various dementias. The Task Group has used the existing AAIDD practice guidelines on care management of dementia among people with intellectual disabilities as a starting point for its work. Its charge has been 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 of persons with ID affected by dementia.

The National Task Group has been organized around three working groups: (1) Dementia Screening -Group S; (2) Health Care Supports - Group H, and (3) Community Supports - Group C. 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. The health care supports group is in the process of developing a process to follow 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 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. To learn more about each of the groups, please visit this page. There is also a group that is exploring training and education opportunities.

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 Groups 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 to set the tone for the NTG’s further work. It was decided to produce a general summative report and the other products noted above. The second meeting was held on November 8, 2011 in Arlington, Virginia in conjunction with the annual AUCD Conference.

The NTG has now 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. Access to the report is available here. The report, “'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,” is composed a background information as well as formative suggestions for what could happen in the United States to address this growing challenge. In this report the NTG also has identified an administrative screening instrument which may have value as a standard instrument which may aid agencies with first-instance and period screening, as well as have use as part of the annual wellness visit under the Affordable Care Act. In the National Dementia and Intellectual Disabilities Action Plan, the NTG has proposed a series of actions that should be undertaken by national, state, and local organizations, as well as governmental entities at the federal and state level.

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 on this topic (one in Phoenix, Arizona on May 17, 2012 and one in Charlotte, North Carolina on June 18, 2012, with others planned for different parts of the United States in 2012 and 2013). Click here to see the workshop schedule. The NTG also expects that its work will help underpin the NAPA, and wants to be sure all of the 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 Seth Keller, M.D. (President, American Academy of Developmental Medicine and Dentistry) at sethkeller@aol.com or Matthew Janicki, Ph.D. (University of Illinois at Chicago) at mjanicki@uic.edu.