NTG Screening Instrument

One of the goals set for the National Task Group (NTG) was to suggest a workable early detection and screening instrument that would help substantiate suspicions of dementia-related decline. To accomplish this, the NTG convened a 'Screening Workgroup' in 2010, which presented its initial report at the first plenary meeting of the NTG in St. Paul, Minnesota in June 2011. Given its findings, the Workgroup was charged with identifying a screening instrument suitable for use by caregivers and staff to identify early signs and symptoms of dementia in adults with intellectual disabilities.

The Screening Workgroup, at the second plenary meeting of the NTG in Alexandria, Virginia in December 2011, reported that a number of early stage screening and assessment instruments existed, some easily used by caregivers and staff, others more complex and which could only be completed by workers with specialized training. After examining various screening and assessment instruments in general use with adults with intellectual disabilities, the Screening Workgroup of the NTG recognized that none of the existing assessment instruments could meet the criteria of being easy to use, easily accessible, and linked to key signs of dementia onset. As the NTG wanted to promote an easy-to-use early detection and screening instrument that could be reliably used by both informal caregivers and paid staff, the Screening Workgroup developed the NTG-DST, an instrument adapted from several sources, including the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID; developed by Deb et al., 2007) and the Dementia Screening Tool (2010; adapted from the DSQIID by the Philadelphia Coordinated Health Care Group from the DSQIID. The NTG-DST also uses comorbidity items adapted from the Longitudinal Health and Intellectual Disabilities Survey (LHIDS) developed by Rimmer and Hsieh (2012) at the University of Illinois at Chicago.

Over the summer of 2012, the NTG piloted the NTG-DST. Seven sites elected to field test the NTG-DST and completed an evaluation of the applicability of the instrument. As the NTG-DST was constructed in a manner so it could be easily completed by family caregivers or direct support staff with minimal orientation or training and could also be used to document and track changes over time, the Screening Workgroup wanted feedback from an user's perspective. As the NTG-DST was also designed so that it could be used to detect ‘cognitive impairment’ among adults with intellectual disabilities as part of the annual wellness visit requirement under Patient Protection and Affordable Care Act (PPACA; PL 111-148), feedback was also wanted on this potential use. Following the initial review, it was decided to modify the original NTG-DST as well as change the name of the instrument to better reflect its purpose – early detection. The NTG-DST was thus renamed the NTG-Early Detection Screen for Dementia (or NTG-EDSD).

It is expected that the NTG-EDSD also can be used to help identify those individuals with dementia-like symptoms whose function and behavior are the results of other causes (such as thyroid disorders, medication interactions, depression, etc.). The purpose of the NTG-EDSD is to offer family and professional caregivers a resource to record their observations regarding changes in areas of cognitive and adaptive functioning known to be associated with dementia. Parent caregivers, who will opt to use the NTG-EDSD, should know that this is not an instrument for the diagnosis of dementia. The intent is that caregivers will use the information captured on the NTG-EDSD to begin a dialogue with health care practitioners and that it will serve as an aid to shared decision-making.

The NTG-EDSD is now available for downloading and use by any interested families and organizations or agencies.

For queries, contact Dr. Lucy Esralew, Screening Workgroup Chair, at LEsralew@trinitas.org

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