Dementia and neuroatypical adults: Can they get a fair assessment?

By Matthew P. Janicki, Ph.D.

Photo by Rick Guidotti for Positive Exposure

A growing challenge

As populations across the world age and older adults live longer, the rates of various dementia are increasing. A 2012 WHO report, ‘Dementia: A Public Health Priority’, highlighted this challenge and the need  for better protocols for early detection and diagnosis. Because dementia is a multifaceted condition with many causes, types, and symptoms, accurate diagnosis is always a challenge — and even more so when cognitive decline occurs. What do we need to do to make sure adults with neurotypical conditions get a fair assessment? A group of experts met to find out. 

In the US, standard early detection/diagnosis protocols and instruments focus on the older population. Unfortunately, they don’t address people with pre-existing cognitive or sensory conditions that affect a range of cognitive functions including:

• normative intellectual development (intellectual disability [ID] and ID with conjoint psychiatric conditions)

• thought, mood, and cognition (such as severe mental illness)

• communication functions (such as conditions on the autism spectrum and hearing/vision impairments)

• brain and motor function (such as cerebral palsy and acquired or traumatic brain injury).  

A national expert panel of clinicians and academic researchers met to discuss barriers to inclusion and determine  clinical best practices for assessing mild cognitive impairment (MCI) or dementia in adults with one of these conditions. 

The Panel examined: (1) the prevalence and risk for dementia in each neuroatypical condition; (2) which neuroatypical conditions had a body of research on determining MCI or dementia; and (3) what adaptations might make the examination process more productive in specific neuroatypical conditions. They also considered post-assessment plans of care or post-diagnostic supports.

The findings

The panel found that many of those neuroatypical conditions posed significant barriers for early detection and assessment. This mostly happened when the primary conditions masked changes in cognitive functioning or in areas where clinicians weren’t knowledgeable enough of assessment nuances among adults with such conditions.  The panel also found that adults with neuroatypical conditions faced a variety of barriers to being accurately examined and having determinations made about whether they had a new or additional cognitive impairment. Further, the panel recognized that most clinicians have trouble discriminating between current and pre-existing behavior and function, especially in conditions with long-term cognitive deficits.

These conditions presented assessment challenges as adults with neuroatypical conditions often have problems with comprehension, oral communication, motor task performance and recognition of assessment related visuals, which make them uncomfortable in testing situations. Neurotypical conditions also complicated testing — standard assessment measures were inadequate for cognitive issues and motor/sensory impairments alike. Clinicians adapted existing dementia assessment measures (or developed new ones) for conditions with pre-existing cognitive issues. They also adapted instruments to compensate for motor or sensory impairments to obtain valid scoring.

The panel noted that the variations to standard dementia assessment instruments and the risk factors associated with each of the neuroatypical conditions, as well as what modifications to existing instruments, may be appropriate.  It also noted which existing specialty instruments might be more appropriate to use. The onus is on clinicians to increase the accuracy rate in the assessments. Therefore they should know the effect of aging in these conditions and the expectations for cognitive decline and the risk of dementia (and of what type). They should also also be familiar with testing adaptations that can facilitate the examination process to generate meaningful data.

Although the panel identified key issues that may prevent or impair early detection or assessment/diagnosis of dementia among adults with neuroatypical conditions, it noted that the process of affecting change in practices will be an on-going process.  This will involve education, advocacy, and culture change to ensure the inclusion of consideration of the needs of adults with neuroatypical conditions facing later-life decline and possibly showing signs of dementia.

How can we address these issues?

The panel posed several recommendations to address the deficiency in protocols and general understanding of assessing adults with neuroatypical conditions:

• Broaden national guidelines to include adaptations of assessment practices to accommodate neuroatypical conditions.

• Enhance education for practitioners to increase knowledge of neuroatypical conditions, how to differentially diagnose MCI or dementia, and how to develop assessment-informed plans for post-diagnostic care.  

• Expand research to produce more evidence-based information on assessing neuroatypical conditions as part of cognitive impairment screenings.

Overall, adults with neuroatypical conditions have 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 neuroatypical conditions, be familiar with expectations for cognitive decline and risk of dementia (and what type) and be facile with adapting testing situations and measures.  Much can be done by various national professional organizations to produce helpful materials, stimulate research to address many unanswered questions, and work toward legislative actions to produce a more inclusive national dementia diagnostics and care system.

The Author:

Matthew P. Janicki, Ph.D. is affiliated with University of Illinois at Chicago, Chicago, IL He served as the principal for the panel’s work.  Credit is due to James Hendrix and Philip McCallion, who were the co-leads.  The project was underwritten by the National Task Group on Intellectual Disabilities and Dementia Practices and the LuMind IDSC Foundation.

The panel’s report, Examining Adults with Neuroatypical Conditions for MCI/Dementia During Cognitive Impairment Assessments – Report of the Neuroatypical Conditions Expert Consultative Panel, can be found at www.the-ntg.org