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Abstract  Accurate detection of dementia in adults with intellectual disabilities is important for clinical care, program planning, and clinical research. This paper reports on a study that examined two major diagnostic methods that varied in the following ways: (1) the extent to which they relied on clinical judgment; (2) the statistical method used to detect declines; and (3) the sensitivity to declines in functioning. Two methods based on testing were compared with one based on clinical judgment. Data were drawn from annual sequential assessments of 168 adults with intellectual disabilities (78 with Down syndrome and 90 with other etiologies). Agreement between testing and clinical judgment methods was 72–75% depending on testing method used. Clinical judgment produced a higher rate of dementia diagnosis for adults with Down syndrome compared with testing methods, suggesting a possible bias. The authors found that diagnostic criteria were useful both for identifying dementia and for describing its characteristics. Our results suggest that clinical judgment could result in a higher number of adults with Down syndrome diagnosed with dementia than methods based on test batteries. Common results across research studies indicate that combinations of sources of information (interviews/direct testing) would be most useful for dementia diagnosis. Future collaboration across research sites is needed to promote rapid progress in this important area, with emphasis on differential diagnosis.

Abstract  Diagnosis of dementia in adults with intellectual disabilities requires documentation of clinically significant declines in memory and other cognitive skills, as well as changes in everyday and emotional functioning. To improve diagnostic accuracy in adults with Down syndrome, the authors examined conditions often associated with dementia, as well as tests useful for documentation of decline. Specific aims were to identify psychiatric disorders or medical conditions that increased the odds of a dementia diagnosis; to evaluate the sensitivity and specificity of widely used dementia scales; and to determine which tests, used singly or in combination, most accurately supported the presence of dementia. Participants were 78 adults with Down syndrome. Two methods based on a large test battery and one method based on clinical judgment were used to diagnose dementia. It was found that combinations of tests lead to increased levels of diagnostic sensitivity compared with single tests. When taken in combination with other investigations, our results suggest that assessment for psychiatric disorders, delayed memory decline, adaptive behavior decline, and the presence of seizures would be useful for the diagnosis of dementia and that dementia scales would provide additional useful information. The authors conclude that combinations of tests and scales will be most useful for diagnosing dementia in adults with intellectual disabilities. The authors suggest that further research is needed to promote rapid progress, with studies that focus on common diagnostic methodology, identification of screening instruments, and amounts of decline indicative of dementia.