Our mission is to advocate for services and supports for people with intellectual disability and their families who are affected by Alzheimer's disease and dementias.
NTG - Early Detection and Screen for Dementia
(NTG-EDSD)
What is the NTG-EDSD
The NTG 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, an administrative screening tool, is useful as part of the information collected in conjunction with the Affordable Care Act’s annual wellness visit and cognitive impairment assessment. The NTG-EDSD has been recognized as a useful dementia symptoms or indicators screening tool in the guidelines issued by the Medical Care Guidelines for Adults with Down Syndrome Workgroup and published in JAMA [2020, 324(15),1543-1556]. It has been found of use in studies of mild cognitive impairment, as well - see Silverman et al., 2021 (JARID, doi: 10.1111/jar.12849)
The NTG-EDSD is also useful for collective discussions and dementia care planning involving families and care providers. A presentation by Dr. Lucy Esralew, of NTG's Board of Directors and Chair of the NTG's Clinical Care Committee, explains its basis and how it can be applied via a set of informative slides. Click here to access her presentation.
The specialized information provided by the NTG-EDSD can aid community practitioners when examining and assessing adults with intellectual disability. The NTG-EDSD is designed to be completed by family caregivers and staff at local agencies and organizations.
Both the NTG-EDSD and its manual are available in numerous language versions. See below for the various versions.
English Language Version
English Print Version
English Electronic Version
Fillable PDF
Foreign Language Versions
Dutch
Italian
Greek
German
French
Spanish /
No. American
Spanish /
European
Japanese
Scottish
Finnish
NTG-EDSD Manuals
English Manual
French Manual
Italian Manual
Spanish Manual
NTG-EDSD Articles and Publications
NADD Bulletin article on NTG-EDSD
Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study
Book chapter on
NTG-EDSD
DEMENZ article on NTG-EDSD
(in German)
AAIC 2020 Poster on NTG-EDSD
Physician's Quick Guide for Using the NTG-EDSD
How to use the Quick Guide?
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The NTG-EDSD is designed to help a clinician be informed about changes his/her patient may be experiencing.
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As an agency staff or family member you should complete the NTG-EDSD based on your knowledge and observations of an adult with an intellectual disability.
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Bring the NTG-EDSD with you to the medical visit and also give the examiner the Quick Guide.
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Be prepared to have some questions and discuss your notations on the NTG-EDSD with the examiner.
Miscellaneous Articles
Early Dementia Screening for Adults with Intellectual Disabilities
Commentary by Ginger Mogel (Sonoran UCEDD Trainee)
Click on Leaf to access article
Evaluation of the National Task Group-Early Detection Screen for Dementia: Sensitivity to 'Mild Cognitive Impairment' in Adults with Down Syndrome
Silverman, W., Krinsky-McHale, S.J., Lai, F., Rosas, H.D., Hom, C., Doran, E., Pulsifer, M., Lott. I., Schupf, N, and Alzheimer’s Disease in Down Syndrome (ADDS) Consortium
Journal of Applied Research in Intellectual Disabilities, 2020, Dec 13. doi:10.1111/jar.12849.
Abstract: The accuracy of the National Task Group-Early Detection Screen for Dementia (NTG-EDSD) was evaluated in a sample of 185 adults with Down syndrome (DS), emphasizing 'mild cognitive impairment (MCI-DS)'. Knowledgeable informants were interviewed with the NTG-EDSD, and findings were compared to an independent dementia status rating based on consensus review of detailed assessments of cognition, functional abilities and health status (including physician examination). Results indicated that sections of the NTG-EDSD were sensitive to MCI-DS, with one or more concerns within the 'Memory' or 'Language and Communication' domains being most informative. The NTG-EDSD is a useful tool for evaluating dementia status, including MCI-DS. However, estimates of sensitivity and specificity, even for detecting frank dementia, indicated that NTG-EDSD findings need to be supplemented by additional sources of relevant information to achieve an acceptable level of diagnostic/screening accuracy.
Usefulness of the NTG-EDSD: Evaluating the Validity of a Screening Tool for Dementia in Adults with Intellectual Disabilities
Ryan, M., Tuso, A., & Herge, A.. (2021). Usefulness of the NTG-EDSD: Evaluating the Validity of a Screening Tool for Dementia in Adults with Intellectual Disabilities.
Doctorate of Occupational Therapy Program Capstone Presentations. Paper 22.
https://jdc.jefferson.edu/otdcapstones/22
click on PPT image embedded on webpage
Dementia and People with Intellectual Disabilities: Guidance on the Assessment, Diagnosis, Interventions and Support of People with Intellectual Disabilities Who Develop Dementia
British Psychological Society. (2015). Dementia and People with Intellectual Disabilities: Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia – Update. Leicester, United Kingdom: Author. https://www.dsrf.org/media/REP77%20final%20proof%20(3).pdf
See page 27 for commentary on the NTG-EDSD.
Workshops/Trainings about the NTG-EDSD
A number of organizations have opted to use the NTG-EDSD for administrative screening and enabling staff to construct dementia care plans. They, or their administrative partners, have organized training to build capacity among staff and caregivers to use the NTG-EDSD for screening and care planning. Listed are a few examples of such trainings.
Wisconsin Alzheimer Institute at the University of Wisconsin
Screening for Dementia in Persons with an Intellectual Developmental Disability
Held January 16, 2019
Early Detection of Changes Associated with Cognitive Decline in Adults with Intellectual & Developmental Disabilities
Held March 12, 2020
Community Access Unlimited (CAUNJ), Elizabeth,New Jersey
National Task Group Early Detection Screen for Dementia (NTG-EDSD)
Presentation by Lucy Esralew, Ph.D. Held July 2019
Natl_Task_Force-Early_Detection_Dementia_PPT-1.pdf (caunj.org)
