Neuroatypical Screening & Assessment
NTG and LuMind IDSC Foundation issued a report on cognitive impairment assessments of adults with neuroatypical and neurodivergent conditions.
The report, 'Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments: Report of the Neuroatypical Conditions Expert Consultative Panel' was developed jointly by the NTG and LuMind IDSC Foundation along with a specially composed Neuroatypical Conditions Expert Consultative Panel.
The aim of the Report was to examine the barriers and special considerations to consider when adults with common neuroatypical (e.g., brain injury, intellectual disability, severe mental illness) and neurodivergent (e.g., autism spectrum disorders, cerebral palsy, sensory impairments) conditions are examined as part of the Annual Wellness Visit or other periodic assessments undertaken to determine whether the adults have a cognitive impairment potentially liked to a mild cognitive impairment (MCI) or dementia.
The report was issued on February 3, 2022 and updated on June 27, 2022. [The update contains new information on hearing and some more recent source materials].
Partial Table of Contents of Conditions includes:
Review of Neuroatypical and Neurodivergent Conditions
Acquired/Traumatic Brain Injury
Autism Spectrum Disorder
Cerebral Palsy
Down Syndrome
Intellectual Disability
Intellectual Disability with Dual Diagnosis with a Mental Health Condition
Serious Mental Illness
Significant Vision/Hearing Impairments
To access abbreviated published version: Janicki, M.P., Hendrix, J.A., & McCallion P., Examining Older Adults with Neuroatypical Conditions For MCI/Dementia: Barriers and Recommendations of the Neuroatypical Conditions Expert Consultative Panel. Alzheimer's Dement. 2022:14(1); e12335; https://doi.org/10.1002/dad2.12335.
Dementia and neuroatypical adults: Can they get a fair assessment?
The March 2023 issue of HELEN: Journal of Human Exceptionality contains a brief article summarizing the findings of the report of Neuroatypical Conditions Expert Consultative Panel.
HELEN. 2023 (Mar13), Dementia and neurotypical adults: Can they get a fair assessment? — Helen: The Journal of Human Exceptionality (helenjournal.org)
Summary and Findings of NTG/LuMind report
Detection of any cognitive impairment as part of the Affordable Care Act’s annual wellness visit in primary or other health care settings for adults with pre-existing neuroatypical or neurodivergent conditions (NACs) is challenging. Included here are common adult conditions that affect normative intellectual development and function (such as intellectual disability [ID] and ID with conjoint psychiatric condition); thought, mood, and cognition (such as severe mental illness); communication functions (such as conditions on the autism spectrum and hearing/vision impairments); and brain and motor function (such as cerebral palsy and acquired or traumatic brain injury).
Current federal guidance for the assessment of cognitive impairment for MCI or dementia do not include information as how to assess such adults. A Neuroatypical Conditions Expert Consultative Panel was tasked with identifying barriers and the special needs and adaptations for examination of adults with NACs. The Expert Panel determined that adults with NACs
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posed various challenges for clinicians when discriminating current behavior and function from that which was pre-existing;
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presented issues related to inherent comprehension, oral communication difficulties, motor task performance impediments, or recognition of visuals; and
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complicated testing when standardized dementia assessment measures were used and benefited from specialized instruments.
Adults with NACs present with varying degrees of risk for dementia. To increase the accuracy rate in the assessments, clinicians should be more aware of how older age affects each of the NACs, be familiar with expectations for cognitive decline and risk of dementia (and what type) and be facile with adapting testing situations and measures. Expert Panel recommendations included:
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broadening federal guidance to include adaptations of assessment practices to accommodate NACs;
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enhancing education for clinicians about NACs and how to detect and diagnose MCI or dementia; and
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expanding research to produce more evidence-based information on assessing NACs for later life adult cognitive diseases/disorders and for planning subsequent post-diagnostic care.
Presentations related to Assessment/Neuroatypical Report
Three presentations on the NTG/LuMind IDSD report were given at the January 24, 2022 meeting of the Federal Advisory Council on Alzheimer's Reserach, Care, and Services
Matthew Janicki, PhD
Assessment Issues in Detecting Cognitive Impairment Among Persons with Intellectual Disabilities
Lucille Esralew, PhD
Detection of New-Onset Decline in Serious Mental Illness
Philip Harvey, PhD
To view presentations click on the titles
Miscellaneous Presentations
"Challenges posed in assessing for MCI or dementia in adults with intellectual disability and other neuroatypical conditions". Presentation at the 32nd Alzheimer Europe Conference, Bucharest, Romania, October 19, 2022.
ABSTRACT: Most dementia assessment clinics are bereft of clinicians expert in determining the presence of MCI/dementia in adults presenting with pre-existing long-term cognitive, emotional, or sensory conditions. Such neuroatypical conditions (such as such as intellectual disability and intellectual disability with conjoint psychiatric condition, autism, cerebral palsy, severe mental illness, hearing/vision impairment, and acquired or traumatic brain injury) may affect normative intellectual capacity, thought and mood, communication, motor, and brain function. These limitations or dysfunctions may confound assessing performance, brain well-being, and the presence of neuropathologies. To determine the extent of assessment barriers posed by these conditions, a Neuroatypical Conditions Expert Consultative Panel was convened, composed of clinical and academic experts in these conditions, and requested to examine innate risk for dementia, idiosyncratic symptoms, efficacy of typical methods of examination for cognitive impairment, and adaptations necessary when examining adults with these neuroatypical conditions.
The Panel concluded that most extant guidance for the assessment of cognitive impairment for MCI or dementia does not sufficiently include information as to how to assess such adults. Also, that adults with these conditions (a) challenge clinicians when they attempt to discriminate current behavior and function from that which was pre-existing; (b) often have inherent comprehension, oral communication difficulties, motor task performance impediments, and difficulty with visuals; and (c) pose difficulties when standardized dementia measures are used. The Panel noted which conditions could benefit from the use of specialized instruments. The panel recommended that guidance be broadened to include adaptations of assessment practices to accommodate adults with neuroatypical conditions; educational materials be developed for clinicians about such conditions and on how to detect and diagnose MCI/dementia; and research be expanded to produce more evidence-based information on both assessing adults with neuroatypical conditions for later-life adult cognitive diseases/disorders and for when planning interventions for post-diagnostic care.
Screening for Dementia as part of the Annual Wellness Visit
Commentary on the CMS Cognitive Assessment and Care Plan Services
Examining adults with intellectual disability as part of the Annual Wellness Visit or other assessment opportunities is often difficult for medical personnel who may be unfamiliar with intellectual disability or the adult who has an intellectual disability. This is difficulty may impede an accurate assessment of current functioning and ascribing a diagnosis of a neuropathology related to a disease or condition resulting in dementia. Differentiating presenting behavior due to cognitive decline from pre-existing cognitive limitations is often difficult absent of 'personal best' functioning data or of recent history of changes in functioning and behavior. This may be problematic for clinicians being asked to undertake a cognitive impairment assessment during the Annual Wellness Visit or other clinical visit.
To provide more guidance for clinicians who may be undertaking a cognitive impairment assessment with the population-at-large, CMS issued new guidance for cognitive assessment and care plan services. The guidance notes that these assessments can help detect cognitive impairment as part of a routine visit through direct observation or by considering information from the patient, family, friends, caregivers, and others. CMS suggests also that clinicians may also use a brief cognitive test and evaluate health disparities, chronic conditions, and other factors that contribute to increased risk of cognitive impairment. CMS notes that if the clinician detects cognitive impairment at an AWV or other routine visit, he or she may perform a more detailed cognitive assessment and develop a care plan. This additional evaluation is necessary to diagnose a person with dementia, such as Alzheimer’s disease, and to identify treatable causes or co-occurring conditions such as depression or anxiety.
This extract from the CMS guidance identifies "What’s Included in a Cognitive Assessment? "
The cognitive assessment includes a detailed history and patient exam. There must be an independent historian for assessments and corresponding care plans provided under CPT code 99483. An independent historian can be a parent, spouse, guardian, or other individual who provides patient history when a patient isn’t able to provide complete or reliable medical history.
Typically, you would spend 50 minutes face-to-face with the patient and independent historian to perform the following elements during the cognitive assessment:
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Examine the patient with a focus on observing cognition
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Record and review the patient’s history, reports, and records
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Conduct a functional assessment of Basic and Instrumental Activities of Daily Living, including decision-making capacity
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Use standardized instruments for staging of dementia like the Functional Assessment Staging Test (FAST) and Clinical Dementia Rating (CDR)
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Reconcile and review for high-risk medications, if applicable
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Use standardized screening instruments to evaluate for neuro-psychiatric and behavioral symptoms, including depression and anxiety
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Conduct a safety evaluation for home and motor vehicle operation
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Identify social supports including how much caregivers know and are willing to provide care
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Address Advance Care Planning and any palliative care needs
This guidance regarding instruments may be applicable for some adults with minimal intellectual disability, but may be less apt for the majority adults with more notable lifelong intellectual disability. Some of the suggested procedures are appropriate, particularly if they do not rely on the individual to be the informant or pose an expectation that the individual may respond to requests in the same manner as neurotypical adults. Of particular concern is the use of generally applicable functional assessments (noted in the guidance) which do not recognize limitations in lifelong functioning or pick-up on decline or changes in function from previous levels.
Unfortunately, missing from the extensive guidance is a stipulation for augmenting the assessment for persons with pre-existing cognitive impairments, such as intellectual disability. The NTG is suggesting that the current CMS guidance be augmented with a notation of what alternative measures and procedure may be applied with conducting cognitive impairment assessments with adults with lifelong intellectual disability. Such procedures should include (a) drawing upon information from persons close to the individual, who have an understanding of the individual's history and optimal functional abilities, (b) using functional assessment instruments developed for specific use with adults with intellectual disability (and particularly for those who may be experiencing decline), and (c) working with primary caregivers, whether family or staff from host agencies, to design dementia care plans. Many host agencies have medical and health records that can help examining clinicians with discriminating typical functioning from those associated with emerging neuropathologies. Further, many host agencies may also have records of the use of intellectual disability-specific standardized screening instruments that can provide insights in the history or frequency of occurrence of behavioral symptoms.
This issue has been recognized by the federal Advisory Council on Alzheimer's Research, Care and Services. This and related barriers to the assessment of other neuroatypical groups were considered in the 2021 Update to the National Plan to Address Alzheimer's Disease.
Several resources are available that can guide general practice clinicians with better understanding the specialized assessment process normally in use with aging adults with intellectual disability, particular when suspicions exists of neuropathological processes. See these publications:
Jokinen, N.S., Janicki, M.P., Keller, S.M., McCallion, P., Force, L.T. and the National Task Group on Intellectual Disabilities and Dementia Practices. (2013). Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 1-28.
Moran J.A., Rafii, M.S., Keller, S.M., Singh, B.K., & Janicki, M.P., (2013). 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 Clinic Proceedings, 88(8), 831-840.
Tsou, A.Y., Bulova, P., Capone, G., Chicoine, B., Gelaro, B., Odell Harville, T., Martin, B.A., McGuire, D., McKelvey, K.D., Peterson, M., Tyler, C., Wells, M., Whitten, M.S. and the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup. (2020). Medical care of adults with Down syndrome: A clinical guideline. JAMA, Oct 20, 324(15), 1543-1556.