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NTG-EDSD

People with Down syndrome (DS) are at high risk of developing Alzheimer dementia (DS-AD) due to a triplication of the amyloid precursor protein gene. While several tools to diagnose and screen for DS-AD, such as the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID), are available in English, validated German versions of such instruments are scarce. A German version of the DSQIID questionnaire (DSQIID-G) was completed by caregivers before attending our specialist outpatient department for DS-AD. All participants were assessed blind to DSQIID-G scoring using clinical and neuropsychological examinations, including the Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities (CAMDEX-DS). ICD-10 and amyloid/tau/ neurodegeneration (A/T/N) criteria were applied to detect and categorise cognitive decline. Of 86 participants, 43 (50%) showed evidence of cognitive decline. A definite diagnosis of DS-AD was reached in 17 (19.8%) and mild cognitive impairment in seven (8.3%) participants. Secondary causes of cognitive decline were determined among 13 (15.1%) participants, and in six (7%) cases, the diagnosis remained unclassifiable due to co-morbidities. Compared with cognitively stable individuals, participants with cognitive decline (n = 43) displayed higher DSQIID-G total scores [median (range): 3 (0-21) vs. 19 (0-48), P < 0.001]. A total score of >7 provided a sensitivity of 0.94 against a specificity of 0.76, to discriminate DS-AD and participants without cognitive decline according to ROC analysis. The convergent validity against the CAMDEX-DS interview score was good (r = 0.74), and split-half reliability (r = 0.96), internal consistency (Cronbach's α r = 0.96), test-retest reliability (r = 0.88) (n = 25) and interrater reliability (r = 0.81) (n = 31) were excellent. The DSQIID-G showed excellent psychometric properties, including concurrent and internal validity and reliability. The cut-off value for screening was lower than in the original English validation study. For a screening instrument like DSQIID-G, a lower cut-off is preferable to increase case detection.

Source: Nuebling, G., Wagemann, O., Deb, S., Wlasich, E., Loosli, S. V., Sandkühler, K., Stockbauer, A., Prix, C., & Levin, J. Validation of a German version of the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID-G) in Down's syndrome. Journal of Intellectual Disability Research, 2024, 68(10), 1146-1155. https://doi.org/10.1111/jir.13144

Validation of a German version of the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID-G) in Down's syndrome

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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 SJ, Lai F, Diana Rosas H, Hom C, Doran E, Pulsifer M, Lott I, Schupf N; Alzheimer’s Disease in Down Syndrome (ADDS) Consortium. Evaluation of the National Task Group-Early Detection Screen for Dementia: Sensitivity to 'mild cognitive impairment' in adults with Down syndrome. J Appl Res Intellect Disabil. 2021 May;34(3):905-915. doi: 10.1111/jar.12849. Epub 2020 Dec 13.

Evaluation of National Task Group-Early Detection Screen for Dementia: Sensitivity to 'mild cognitive impairment' in Adults with Down Syndrome

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By age 60, 60% of adults with Down syndrome (DS) have dementia. Detecting dementia in persons with intellectual disability (ID) can be challenging because their underlying cognitive impairment can confound presentation of dementia symptoms and because adults with ID may have difficulty reporting symptoms. The National Task Group Early Detection Screen for Dementia (NTG‐EDSD) was developed to aid detection of report of cognitive impairment in adults with ID. We implemented an educational curriculum using the NTG‐EDSD and evaluated the impact of the intervention on professional caregivers’ self‐assessed capacity to identify persons with ID and dementia. We held five in‐person training sessions for professional caregivers of persons with ID, partnering with various managed care organizations and social services agencies. We assessed knowledge and attitudes at baseline; immediately after training; and 1 week, 1 month, and 6 months after training. A total of 154 direct care workers, case managers, health‐care providers, and other social services staff attended the trainings. Satisfaction with the NTG‐EDSD training was high; 94% of attendees agreed or strongly agreed that they could use the NTG‐EDSD with their clients. After training, attendees reported a marked increase in confidence in their ability to track various health circumstances and detect functional decline in their clients, although some gains were not sustained over time. As a result of the training, one managed care organization made the NTG‐EDSD a standard part of its assessment of adults with DS starting at age 40. Social services and health‐care professionals can learn to document signs of cognitive decline in adults with ID using the NTG‐EDSD. Attendees 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. Because not all gains were sustained over time, booster trainings may be necessary.

Source: Walaszek A, Albrecht T, LeCaire T, et al. Training professional caregivers to screen for report of cognitive changes in persons with intellectual disability. Alzheimer's Dement. 2022;8:e12345. 10.1002/trc2.12345

Training professional caregivers to screen for report of cognitive changes in persons with intellectual disability

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Dementia in people with intellectual disability (ID) is frequent but hard to recognise. Evidence-based recommendations for suitable instruments are lacking. The present study set out to evaluate informant-based dementia assessment instruments and to provide evidence-based recommendations for instruments most suitable in clinical practice and research. A systematic review was conducted across ten international electronic databases. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines, including a risk of bias assessment, was applied to extract information and to evaluate measurement properties and the quality of available evidence. In total, 42 studies evaluating 18 informant-based assessment instruments were analysed. For screening purposes, we recommend the Behavioral and Psychological Symptoms of Dementia in Down Syndrome Scale (BPSD-DS), the Cognitive Scale for Down Syndrome (CS-DS), the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID), and provisionally the NTG-EDSD. For a more thorough dementia assessment, we recommend the Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities (CAMDEX-DS). Our study informs clinicians and researchers about adequate, well-evaluated dementia assessment instruments for people with ID, and highlights the need for high quality studies, especially regarding content validity.

Informant-based Assessment Instruments for Dementia in People with Intellectual Disability: A Systematic Review and Standardised Evaluation

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This resource guidebook, developed by the New York State Office for the Aging for older adults caring for an individual with an intellectual disability, offers information to help connecting them with information and resources to begin the process of long-term planning, including financial and legal tools as well as supportive programs and services. It also covers the use of the NTG-EDSD for screening and aiding in care planning.

Future Planning Guidebook for Older Caregivers of Adults with Intellectual and Developmental Disabilities

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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

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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

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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

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Dementia and Intellectual Disabilities

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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

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Importance in Overall Health in Adults with Intellectual Disability and Dementia

Educational Presentation

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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

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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

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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

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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

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AAIC 2020 Poster on NTG-EDSD

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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

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

NTG-EDSD - Book Chapter

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Dementia diagnostics in people with learning difficulties (in German)

DEMENZ Article on NTG-EDSD (in German)

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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

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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

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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

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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

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

NADD Bulletin article on NTG-EDSD

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