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Publications Library

A detailed instructional on how to use simple household objects and interactions  to show proficiency in some tasks that reflect capability and neurological function. The protocol was developed for use by families or staff to record 'personal best' and for use overtime to assess continued or diminishing functional abilities.

Dalton Protocol for Recording Baseline Information

Instrument guide

Older adults engaging in regular physical activity can help create a buffer toward cognitive decline. The main aim of this study was to assess the effects of physical activity and cognitive functioning on a sample of young-old and old-old physically active adults and young-old and old-old sedentary adults. Cognitive functioning was examined using the digit span test, Wisconsin card sorting task. The National Task Group-Early Detection Screen for Dementia measure was used explore the relationship between scores and physical activity and sedentary adults. Findings from the study showed partial support for physical activity has a positive relationship with cognitive functioning. The results found Young-old adults did better on the DST than all other groups regardless of being sedentary or physically active. Young-old physically active adults, however, did better on the DST latency measure than sedentary adults while old-old physically active adults did worse on the DST latency measure compared with old-old sedentary adults. The results also found that Physically active adults had a better score on the NTG-EDSD measure compared to the sedentary adults. Findings showed no significant differences for the WCST. Future research exploring the relationship between physical activity and cognitive functioning should do so by having more control over the extraneous variables.

Source: Younan B. Cognitive Functioning Differences Between Physically Active and Sedentary Older Adults. J Alzheimers Dis Rep. 2018 May 26;2(1):93-101. doi: 10.3233/ADR-180053.

Cognitive Functioning Differences Between Physically Active and Sedentary Older Adults

Journal article

Adults with Down syndrome (DS) are at exceptionally high risk for Alzheimer’s disease (AD), with virtually all individuals developing key neuropathological features by age 40. Identifying biomarkers of AD progression in DS can provide valuable insights into pathogenesis and suggest targets for disease modifying treatments.  The article describes the development of a multi-center, longitudinal study of
biomarkers of AD in DS. The protocol includes longitudinal examination of clinical, cognitive, blood and cerebrospinal fluid-based biomarkers, magnetic resonance imaging and positron emission tomography measures (at 16-month intervals), as well as genetic modifiers of AD risk and progression. Approximately 400 individuals will be enrolled in the study (more than 370 to date). The methodological approach from the administrative, clinical, neuroimaging, omics, neuropathology, and statistical cores is provided.  This represents the largest U.S.-based, multi-site, biomarker initiative of AD in DS. Findings can inform other multidisciplinary networks studying AD in the general population.  The NTG-EDSD is included among the instruments in this study.

Source:  Handen BL, Lott IT, Christian BT, Schupf N, OBryant S, Mapstone M, Fagan AM, Lee JH, Tudorascu D, Wang MC, Head E, Klunk W, Ances B, Lai F, Zaman S, Krinsky-McHale S, Brickman AM, Rosas HD, Cohen A, Andrews H, Hartley S, Silverman W; Alzheimer's Biomarker Consortium‐Down Syndrome (ABC‐DS). The Alzheimer's Biomarker Consortium-Down Syndrome: Rationale and methodology. Alzheimers Dement (Amst). 2020 Aug 3;12(1):e12065. doi: 10.1002/dad2.12065.

The Alzheimer's Biomarker Consortium‐Down Syndrome: Rationale and methodology

Journal article

Popular family magazine article about use of the NTG-EDSD and its applications to assessing aging adults with intellectual disability.

Dementia and Intellectual Disabilities

Magazine article

This document describes the dementia diagnosis and healthcare pathway for people with an intellectual disability in the NHS Hertfordshire area of England. The pathway aims to support a standard approach to referrals for people with an intellectual disability where symptoms indicate or there may be a concern that the individual may be affected by dementia. The pathway guides the multi-disciplinary team around the individual through the sequence of events from referral to screening and diagnosis, and post-diagnosis. The aim is to ensure that a coordinated approach is taken by the multi-disciplinary team and the individual provided with the most suitable person-centered care with respect to diagnosis and healthcare provision.  The guideline also provides information on using the NTG-EDSD for screening and assessment.

Dementia Diagnosis and Healthcare Pathway for People with a Learning Disability

Guideline document

Educational presentation given at the Winter Meeting of ACCSES held in Phoenix, AZ, on January 16, 2023. The presentation covers the medical aspects of dementia in adults with intellectual disability, co-incident conditions, therapeutic pharmaceuticals, biomarkers, and general health and medical practices. This is Part 2 of a three-part presentation session (Given by Dr Seth M. Keller).

Importance in Overall Health in Adults with Intellectual Disability and Dementia

Educational Presentation

Holingue et al. looked at identifying obstacles associated with screening and assessment of dementia among older adults with ID in a crisis-prone population. The NTG-EDSD was administered to enrollees aged 50 years and older in the START program. The authors noted that the NTG-EDSD provided a helpful way to collect information and document changes in the enrollees' functioning and that the NTG-EDSD may be helpful for capturing potential dementia-associated changes over time in crisis-prone adults with ID, though obstacles remain to the access of further evaluation for dementia.

Screening for dementia among adults with intellectual disability: Outcomes from a pilot study

Journal article

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.

Usefulness of the NTG-EDSD: Evaluating the Validity of a Screening Tool for Dementia in Adults with Intellectual Disabilities


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.
Source: 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.

Evaluation of the National Task Group-Early Detection Screen for Dementia: Sensitivity to 'Mild Cognitive Impairment' in Adults with Down Syndrome

Journal article

Walaszek et al. trained direct care workers, case managers, health-care providers, and other social services personnel on using the NTG-EDSD. After training, attendees reported a marked increase in confidence in their ability to track various health circumstances and detect functional decline in their clients. Authors noted that social and health-care professionals can learn to document signs of cognitive decline in adults with ID using the NTG-EDSD. The study participants were highly satisfied with the training, experienced an increase in confidence in their care of persons with ID, and found the NTG- EDSD feasible to use.

Effectively training professional caregivers to screen and refer persons with dementia and intellectual/developmental disability

Journal article

A report via a conference poster from the Wisconsin Alzheimer's Institute where the NTG-EDSD was used to effectively train professional caregivers to screen and refer persons with dementia and intellectual disabilities.

AAIC 2020 Poster on NTG-EDSD

Conference poster

Wisconsin Alzheimer Institute at the University of Wisconsin held a training using the NTG-EDSD for administrative screening and enabling staff to construct dementia care plans.

Screening for Dementia in Persons with an Intellectual Developmental Disability

Resource document

Chapter 11: NTG-EDSD, in Neuropsychological Assessments of Dementia in Down Syndrome and Intellectual Disabilities, Vee P. Prasher, Editor.

NTG-EDSD - Book Chapter

Book chapter

Dementia diagnostics in people with learning difficulties (in German)

DEMENZ Article on NTG-EDSD (in German)

Journal article

Abstract: Background In this study, we evaluated the feasibility of using the German-language version of a
recently developed screening tool for dementia for persons with intellectual disability (ID): the
National Task Group – Early Detection Screen for Dementia (NTG-EDSD). Some 221 paid carers of ageing persons with ID were asked to use the NTG-EDSD and report back on its utility and on 4 feasibility dimensions, and to provide detailed feedback on aspects deemed critical or missing.  All feasibility dimensions were rated good to very good, and 80% of respondents found the NTG-EDSD useful or very useful for the early detection of dementia. This highlights a high acceptability of this instrument by the main target group. The positive feasibility evaluation of the NTG-EDSD indicates the usability and adequacy
of this instrument for application of early detection of dementia in persons with ID.

Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study 

Journal article

This is a comprehensive guide to various facets related to dementia in adults with intellectual disability, including assessment and diagnostics, care management, and other topics.  See page 27 for commentary on the NTG-EDSD.  (2015 updated version)

Source: 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.

Dementia and People with Intellectual Disabilities: Guidance on the Assessment, Diagnosis, Interventions and Support of People with Intellectual Disabilities Who Develop Dementia

Resource document

This version of the NTG guidelines, drawn from research, clinical experiences,  and demonstrated best practices is a popularized document (see also Jokinen et al., 2013 for the journal version). The guidelines delineate what actions should be undertaken and are presented in a manner that reflects the progressive nature of prevalent dementias. To enable the development of the most appropriate and useful services and care management for adults with intellectual disabilities affected by dementia, the guidelines are based upon the dementia staging model generally accepted for practice among generic dementia services. The staging model follows the flow from a prediagnosis stage when early recognition of symptoms associated with cognitive decline are recognized through to early, mid, and late stages of dementia, and characterizes the expected changes in behavior and function. To aid with widespread efforts to detect possible symptoms of MCI or dementia, the guidelines cite the application of the NTG-Early Detection Screen for Dementia as a first step in documenting early signs of cognitive and functional changes among people with intellectual disabilities. The guidelines also provide information on non-pharmacological options for providing community care for persons affected by dementia as well as commentary on abuse, financial, managing choice and liability, medication, and nutritional issues.

Community Care and Supports for People with Intellectual Disabilities Affected by Dementia

Resource document

A new informative NTG-EDSD guidesheet is now available for primary care physicians who may be seeing an adult with an intellectual disability with possible cognitive decline. The guide explains what the NTG-EDSD is and what information it contains. How to use the quick guide: (1) The NTG-EDSD is designed to help a clinician be informed about changes his/her patient may be experiencing. (2) 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. (3) Bring the NTG-EDSD with you to the medical visit and also give the examiner the Quick Guide. (4) Be prepared to have some questions and discuss your notations on the NTG-EDSD with the examiner.

Physician's Quick Guide for Using the NTG-EDSD

Resource document

NADD Bulletin publication on the manual that accompanies the NTG-EDSD (original version)

NADD Bulletin article on NTG-EDSD

Journal article

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