National Task Group Early Detection Screen for Dementia (NTG-EDSD)

  • Lucille Esralew
  • Matthew P. JanickiEmail author
  • Seth M. Keller


Early identification of signs and symptoms of cognitive and functional decline associated with dementia is an important first step in managing the course of dementia and providing quality care. Studies show that persons with intellectual disabilities are as susceptible to the causes of dementia as are other adults, with the relative distribution of etiologies mirroring those of other adults. The challenge, as noted by the World Health Organization, is to identity early those adults susceptible and affected so that assessment and diagnostic work-ups can be undertaken. A screening tool can be used to substantiate changes in adaptive skills, behavior and cognition. With early detection, assessment and diagnosis can be carried out to determine whether cognitive changes are the result of a neuropathological process related to disease or trauma to the brain, or attributable to other causes, which may be treatable and reversible. The National Task Group Early Detection Screen for Dementia (NTG-EDSD) is an informant-based rating tool for use with adults with intellectual and developmental disabilities who are suspected of experiencing changes in thinking, behavior, and adaptive skills suggestive of mild cognitive impairment or dementia. This chapter offers background on the NTG-EDSD and describes benefits that may accrue from using a dementia screening instrument.


  1. 1.
    Alzheimer’s Europe. ROADMAP project paves way for sustainable platform for real world evidence in Alzheimer’s disease. 2016. Available from
  2. 2.
    World Health Organization. Dementia: a public health priority. Geneva: WHO; 2012.Google Scholar
  3. 3.
    National Task Group on Intellectual Disabilities and Dementia Practices (NTG). “My thinker’s not working”: a national strategy for enabling adults with intellectual disability affected by dementia to remain in their community and receive quality supports. 2012. Available from:
  4. 4.
    Goodman RA, Lochner KA, Thanbisetty M, et al. Prevalence of dementia subtypes in United States medicare fee-for-service beneficiaries, 2011–2013. Alzheimers Dement. 2017;13:38–7.CrossRefGoogle Scholar
  5. 5.
    British Psychological Society. Dementia and people with intellectual disabilities guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia. Leicester; 2015.Google Scholar
  6. 6.
    Sheenan B. Assessment scales in dementia. Ther Adv Neurol Disord. 2011;5:349–58.CrossRefGoogle Scholar
  7. 7.
    Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatry Res. 1975;12:189–98.CrossRefGoogle Scholar
  8. 8.
    Deb S, Braganza J. Comparison of rating scales for the diagnosis of dementia in adults with Down’s syndrome. J Intellect Disabil Res. 1999;43:400–7.CrossRefPubMedGoogle Scholar
  9. 9.
    Elliott-King J, Shaw S, Bandelow S, et al. A critical literature review of the effectiveness of various instruments in the diagnosis of dementia in adults with intellectual disabilities. Alzheimers Dement (Amst). 2016;4:126–48.Google Scholar
  10. 10.
    DHHS. National plan to address Alzheimer’s disease. Washington: US Department of Health and Human Services; 2012.Google Scholar
  11. 11.
    National Task Group on Intellectual Disabilities and Dementia Practices (NTG). National Task Group – Early detection screen for dementia; 2013. Available from:
  12. 12.
    Esralew L, Janicki MP, DiSipio M, et al, Members of the National Task Group Section on Early Detection and Screening. National task group early detection screen for dementia. NADD Bull. 2013;16:47–54.Google Scholar
  13. 13.
    Esralew L, Janicki MP, DiSipio M, et al, Members of the National Task Group Section on Early Detection and Screening. National Task Group early detection screen for dementia: manual. 2013. Available from:
  14. 14.
    Deb S, Hare M, Prior L, et al. Dementia screening questionnaire for individuals with intellectual disabilities. Br J Psychiat. 2007;190:440–4.CrossRefGoogle Scholar
  15. 15.
    Strydom A, Hassiotis A. Diagnostic instruments for dementia in older people with intellectual disability in clinical practice. Aging Ment Health. 2003;7:431–7.CrossRefPubMedGoogle Scholar
  16. 16.
    McLoughlin D, Carter J. The fourth international conference on Alzheimer’s disease and related disorders, 29 July–3 August 1994, Minneapolis, Minnesota, USA. Int J Geriatr Psychiatry. 1994;9:1003–4.CrossRefGoogle Scholar
  17. 17.
    Aylward EH, Burt DB, Thorpe LU, et al. Diagnosis of dementia in individuals with intellectual disability. J Intellect Disabil Res. 1997;41:152–64.CrossRefPubMedGoogle Scholar
  18. 18.
    Jokinen N, Janicki MP, Keller SM, et al, the National Task Group on Intellectual Disabilities and Dementia Practices. Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. J Policy Pract Intellect Disabil. 2013;10:1–28.Google Scholar
  19. 19.
    Zeilinger EL, Gärtner C, Janicki MP, et al. Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: a German-language version feasibility study. J Intellect Develop Disabil. 2016;41:42–9.CrossRefGoogle Scholar
  20. 20.
    Rimmer J, Hsieh K. Health promotion. In: Rubin L, Merrick J, Greydanus D, Patel D, editors. Health care for people with intellectual and developmental disabilities across the lifespan. New York: Springer Publishing; 2016. p. 1087–103.CrossRefGoogle Scholar
  21. 21.
    Moran JA, Rafii MS, Keller SM, et al. The National Task Group on intellectual disabilities and dementia practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities. Mayo Clin Proc. 2013;88:831–40.CrossRefPubMedGoogle Scholar
  22. 22.
    Prasher VP. Alzheimer’s disease and dementia in Down’s syndrome and intellectual disabilities. Oxford: Radcliffe Publishing; 2005.Google Scholar
  23. 23.
    Bishop KM, Hogan M, Janicki MP, et al. Guidelines for dementia-related health advocacy for adults with intellectual disability and dementia: National Task Group on intellectual disabilities and dementia practices. Intellect Dev Disabil. 2015;53:2–29.CrossRefPubMedGoogle Scholar
  24. 24.
    American Psychiatric Association (APA). Diagnostic and statistical manual of mental disorders. 5th ed. Washington, DC: APA; 2013.CrossRefGoogle Scholar
  25. 25.
    Fletcher RJ, Barnhill J, Cooper S-A, editors. Diagnostic manual – intellectual disability: a textbook of diagnosis of mental disorders in persons with intellectual disability (DM-ID-2). 2nd ed. Kingston, NY: NADD Press; 2016.Google Scholar
  26. 26.
    NHS Scotland. Dementia and equality – meeting the challenge in Scotland: recommendations of the National Advisory Group on dementia and equality. Edinburgh: Author; 2016. Available from: Scholar
  27. 27.
    NHS Tayside Learning Disability Service. Healthcare: dementia screening tool for paid and unpaid carers. 2017. Available from:
  28. 28.
    Janicki MP. Components of dementia-capable group home care. Paper presented at the lifelong disabilities SIG of the Gerontological Society of America, Nov 20; Orlando, Florida; 2015.Google Scholar
  29. 29.
    Janicki MP. Stationäre Einrichtungen der Behindertenhilfe für Menschen mit geistiger Behinderung und dementieller Erkrankung [Group home care for adults with intellectual disabilities and Alzheimer’s disease]. In: Müller SV, Gärtner C, editors. Lebensqualität im Alter: Perspektiven für menschen mit geistiger Behinderung und psychischen Erkrankungen [Quality of life in old age: prospects for people with intellectual disabilities and mental illness]. Wiesbaden: Springer Fachmedien; 2016. p. 237–62.Google Scholar
  30. 30.
    National Institute of Health. NIH supports new studies to find Alzheimer’s biomarkers in Down syndrome: groundbreaking initiative will track dementia onset, progress in Down syndrome volunteers. 2015. Available from:
  31. 31.
    Tsoucalas G, Bourelia S, Markellos A, et al. Gatos questionnaire for early detection of suspicious signs for Alzheimer disease and related dementia syndromes – GQEDSS – ADRDS Q160 v 1.0. Preliminary results. Int J Psychol Brain Sci. 2016;1:69–85.Google Scholar
  32. 32.
    Zeilinger EL, Stiehl KA, Weber G. A systematic review on assessment instruments for dementia in persons with intellectual disabilities. Res Dev Disabil. 2013;34:3962–77.CrossRefPubMedGoogle Scholar
  33. 33.
    Janicki MP, McCallion P, Splaine M, et al. Consensus statement of the international summit on intellectual disability and dementia related to nomenclature. Intellect Dev Disabil. 2017;55(5). Article in Press.Google Scholar
  34. 34.
    McCarron M, Gill M, McCallion P, et al. Health co-morbidities in ageing persons with Down syndrome and Alzheimer’s disease. J Intellect Disabil Res. 2005;49:560–6.CrossRefPubMedGoogle Scholar
  35. 35.
    Janicki MP, Dalton AJ, McCallion P, et al. Group home care for adults with intellectual disabilities and Alzheimer’s disease. Dementia. 2005;4:361–85.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG 2018

Authors and Affiliations

  • Lucille Esralew
    • 1
  • Matthew P. Janicki
    • 2
    Email author
  • Seth M. Keller
    • 3
  1. 1.CARES & S-COPE, Trinitas Regional Medical CenterElizabethUSA
  2. 2.Department of Disability and Human DevelopmentUniversity of Illinois at ChicagoChicagoUSA
  3. 3.Advocare Neurology of South JerseyLumbertonUSA

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