The NTG was organized in late 2010 when 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, combined their efforts and created the National Task Group on Intellectual Disabilities and Dementia Practices. Shortly afterwards in 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 was charged with complementing the NAPA effort and ensuring 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. This complement the federal initiative, the NTG was asked to address the myriad requests for more specific information and practice models for providing quality care for people with intellectual disabilities affected by dementia. When it began, the NTG set as its overall goals a number of tasks. One was to update the technological and clinical practices used by agencies in delivering supports and services to adults with ID affected the various dementias. Another was to create a workable screening instrument that would help substantiate suspicions of dementia-related decline, and a third was to educate and expand the knowledge about dementia and intellectual disabilities via trainings, production of materials, and informing key stakeholders. To accomplish its initial goals, the National Task Group organized three working groups: (1) Dementia Screening [Group S]; (2) Health Care Supports [Group H], and (3) Community Supports [Group C].
Over the course of the past five years, the NTG, via its various working groups has produced and issued a number of reports and documents. The NTGs major effort was the production and issuance of 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. 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 could become a standard instrument that 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. Also, 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. The NTG is also pleased to note that the American Association for Intellectual and Developmental Disabilities has made the report available on its website. The ‘Thinker’ Report is also available on the websites of numerous other organizations.
A number of products have been produced by the NTG’s specific 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 for looking for cognitive and functional decline in adults with ID who are aging. The health care supports group has produced suggested guidelines for assessment and interventions with medical personnel are involved. The community supports group has developing a document that that recommended 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 and their products check the website menu.
As part of its initial work, the NTG 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. Working group meetings were on-going and other plenary sessions of the NTG were scheduled as needed.
Since 2014, the NTG has organized a number of workshops and webinarson the topic of dementia and intellectual disabilities. NTG members are also involved in special presentations at the annual meetings of various national associations and organizations, including the 2013 AAIC in Boston. The NTG has offered advice to the CARF organization, a certification body for programs serving people with developmental disabilities. The CARF has produced a new set of standards, “Older Adults and Older Adults/Dementia Care Specific Population Designations” that went into effect in July 2014. The standards are designed to assess individually tailored services that support adaptive aging and compensate for aging-related decline, such as seen in adults with intellectual disabilities and dementia.
NTG members, along with collaborating organizations and several former GECs, engaged in developing a national curriculum for training personnel who work for agencies and organizations that provide services to adults with intellectual disabilities affected by dementia. Several levels of training materials were developed, including a core curriculum for personnel working directly with adults with dementia. A national curriculum of 18 modules was developed that can be used in the orientation of personnel who are new hires or who are already employed and work with adults with intellectual disabilities yet unaffected by dementia, or who might be at risk. The new national curriculum was launched on June 16, 2014 at the Joint Conference of the American Academy of Developmental Medicine and Dentistry and the National Task Group, in Princeton, New Jersey, was piloted at several settings in late 2014, and out into effect in 2015 with a series of regional workshops. The curriculum is now in place and serves as the core for a series of two-day workshops made available throughout the United States. The workshop also includes a thire day for orientation of regional trainers who are authorized to use the modules for in-house training.
The NTG, in conjunction with the American Academy of Developmental Medicine and Dentistry, has also held several annual national conferences on dementia related issues and intellectual disabilities. The first conference was held in Princeton, New Jersey on June 16-18, 2014 and the second in Los Angeles, California, in July 2015. The third is schedule for July 8-10, 2016 in Chicago, Illinois.
The NTG also released the NTG-Early Detection Screen for Dementia(NTG-EDSD) which was developed in response to requests by family caregivers and agencies for a tool useful to record observations of changes in function. The NTG-EDSD is used in starting that critical conversation with (and among) clinical personnel as to whether their observations merit more explicit assessment for MCI or dementia or — alternatively – signal behaviors that may be amenable to intervention and remediation. The NTG-EDSD can be useful as part of the information collected in conjunction with the Affordable Care Act’s annual wellness visit and cognitive impairment assessment. The specialized information provided by the NTG-EDSD can aid community practitioners when examining and assessing adults with intellectual disabilities. The NTG-EDSD (and its accompanying manual), available on the NTG website in several language versions, is designed to be completed by family caregivers and staff at local agencies and organizations.
Summary of NTG Activities
•An early detection-screening instrument (NTG-EDSD) & manual
•Various language versions available
•Access at www.aadmd.org/ntg
•Community supports guidelines
•Health practitioner assessment guidelines
•Health advocacy guidelines
•Community dementia care setting guidelines
•Training and education activities
•National training curriculum
•Training workshops and webinars
•Meetings with professional groups
•Information for families (FAQ)
•US Administration on Community Living
•NASDDDS, NASUAD, NACDD & state activities
•CARF & national program standards
•The Arc, NDSS, Alzheimer’s Association
History (before 2012)
•2010 – The NTG is organized following testimony at ADD’s public listening session in Orlando with help from AAIDD, UIC and AADMD
•2011 – President Obama signs the National Alzheimer’s ProjectAct (NAPA)
•2011 – The first meeting of the Advisory Council on Alzheimer’s Research, Care, and Services
•2011 – First plenary meeting of NTG in June at AAIDD conference in St. Paul, MN
•2011 – Second plenary meeting of NTG in November at AUCD conference in Arlington, VA
•2012 — NTG issues the ‘My Thinker’s Not Working’ document and action plan
•2012 – The National Plan to Address Alzheimer’s Disease, under NAPA, is issued
•2012 – NTG formalizes an administrative ‘Steering Committee’
•2013 – NTG issues the NTG-EDSD &Manual
•2013 – The first plan update to the National Plan, under NAPA, is issued
•2013 – NTG gains administrative status under AADMD as ‘committee’ in by-laws
•2013 – NTG publishes ‘Guidelines for Structuring Community Care and Supports for People with Intellectual Disability Affected by Dementia’
•2013 – NTG publishes ‘Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disability’
•2014 – The second plan update to the National Plan, under NAPA, is issued
•2014 – NTG publishes ‘Guidelines for Dementia-Related Health Advocacy for Adults with Intellectual Disability and Dementia’
•2014 – NTG completes the National Core Curriculum on Dementia and Intellectual Disabilityand field-tests a two day workshop model
•2014 – First NTG national ‘conference’ within AADMD in Princeton, NJ
•2014 – NTG publishes ‘Viability of a dementia advocacy effort for adults with intellectual disability: using a national task group approach’
•2015 – NTG begins to provide two-day workshops on dementia and intellectual disability across the US – along with a train-the-trainer day
•2015 – The third plan update to the National Plan, under NAPA, is issued
•2015 – Second NTG national ‘conference’ within AADMD in Los Angeles, CA
•2015 – NTG publishes ‘Why do we need national guidelines for persons with intellectual disability and dementia?’
•2016 – NTG expands provision of two-day workshops on dementia and intellectual disability across the US – along with a train-the-trainer day
•2016 – The fourth plan update to the National Plan, under NAPA, is issued
•2016 – Third NTG national ‘conference’ within AADMD in Chicago, IL
•2016 – Agreement is reached to expand NTG workshop to Canada with a Canadian-based training and education consortium
•2016 – The NTG-EDSD is selected as a core instrument within the national Down syndrome biomarkers study funded by NIH
•2016 – NTG is involved with aiding/providing workshops to several grantees within the Alzheimer’s Disease Initiative grant program under the Administration on Community Living
•2016 – NTG is collaborating with the MED DS-SIG on clarifying neuropathological regression among post-teen adults with Down syndrome
•2016 – NTG is helping plan and will participate in the ‘International Summit on Dementia and Intellectual Disability’ to be held in Glasgow, Scotland, October 13-14
•2016 – NTG is producing an updated NTG-EDSD 2.0
Next Steps (2017 and afterwards)
•2017 – NTG is working with NDSS and the Alzheimer’s Association to produce a booklet on dementia and Down syndrome for families and other caregivers
•2017 – NTG plans to issue guidelines for the development and use of small community care settings for people with intellectual disability affected by dementia
•2017-2025 – NTG plans to continue to shadow the NAPA Federal Council and the National Plan updates to ensure adequate and appropriate inclusion of concerns of people with intellectual disability and their caregivers