Dementia is characterized by a deterioration in cognitive and functional abilities, so seeing the first signs of this decline early is crucial for controlling the disease and giving the best treatment possible. In addition, researchers have found that people with intellectual impairments have the same susceptibility to dementia risk factors as the general adult population, with a similar proportional distribution of dementia risk factors. 

The National Task Group Early Detection Screen For Dementia

As noted by the World Health Organization, the challenge is to identify those adults who are susceptible and affected early so that assessment and diagnostic work-ups can be undertaken. A screening tool can be used to substantiate changes in adaptive skills, behavior, and cognition. With early detection, assessment and diagnosis can be carried out to determine whether cognitive changes are the result of a neuropathological process related to disease or trauma to the brain or attributable to other causes, which may be treatable and reversible. The National Task Group Early Detection Screen for Dementia (NTG-EDSD) is an informant-based rating tool for adults with intellectual and developmental disabilities suspected of experiencing changes in thinking, behavior, and adaptive skills suggestive of mild cognitive impairment or dementia. This chapter offers background on the NTG-EDSD and describes the benefits that may accrue from using a dementia screening instrument.

The National Task Group on Intellectual Disabilities and Dementia

Concerns about aging are a rising reason why adults with intellectual and developmental disabilities (I/DD) see their doctors. Unfortunately, most doctors don't feel confident in their ability to provide an answer to the complicated clinical topic of how to evaluate possible cognitive decline or dementia in older persons with intellectual and developmental disabilities. Since this issue is still poorly covered in the scientific literature, a national task force was formed to investigate and provide solutions. The following consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities have been published by the task group, which is comprised of specialists who work extensively with adults with I/DD. They serve as a framework for practicing physicians who seek to approach this clinical question practically, thoughtfully, and comprehensively.

Guidelines For Structuring Community Care And Support For People With Intellectual Disabilities Affected By Dementia

The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in the United States has adopted guidelines covering the period from when suspicions arise to the eventual end of care to aid families and organizations in planning for the extended care that accompanies a diagnosis of dementia. The instructions outline what should be done and are provided in a way that is consistent with the deteriorating character of the most common dementias. The NTG adapted the staging model often used by generic dementia services to enable the creation of the most helpful services and care management for persons with intellectual impairments who are afflicted with dementia. The staging model, which characterizes the predicted changes in behavior and function, traces the progression from a prediagnosis stage in which early detection of symptoms associated with cognitive decline is detected through the early, middle, and late stages of dementia. The NTG-Early Detection Screen for Dementia is recommended as a first step in documenting early signs of cognitive and functional changes among people with intellectual disabilities, following the recommendations of the National Plan to Address Alzheimer's Disease for earlier and more widespread efforts to detect possible symptoms. Nonpharmaceutical approaches to caring for people with dementia in the community are discussed, along with criticism on abuse, finances, managing preferences and risks, medications, and diet.

Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disabilities

ID patients aren't reliably diagnosed with dementia. Because people with ID score poorly on cognition tests, even without dementia, traditional evaluation tools aren't suitable. Dementia is diagnosed in ID patients when cognitive and functional impairment exceeds pre-ID levels. Many folks won't have had a baseline exam before seeing losses.

Caregivers often miss dementia's early signs. In addition, due to a lack of information, people often confuse ID dementia symptoms for those of aging, behavioral difficulties, or the impairment itself. As a result, primary care clinicians must ask about even moderate changes in functioning, such as coarsening behavior or personality shifts. When grounds for concern are detected, the PCP organizes additional, more detailed investigations.

Screening Checklists

Individuals with an ID are likely to have abnormal results on standardized tests of cognition, even in the absence of dementia, rendering screening checklists designed for the general population useless. More information may be gleaned by contrasting the person's present functioning with previous assessments of their potential. With the individual's permission, questioning a family member, caretaker, or critical worker about the person's decline might help establish a pattern of declines.

Assessing Cognitive Capacity in Depth

Expertise in diagnosing and evaluating adults with ID is necessary to assess mental capacity thoroughly. It would be best if you evaluated them on various fronts, such as their memory, executive function, praxis, visual-spatial abilities, language (via testing a sample of their written and spoken language), attention, and processing speed. Assessment of adaptive behaviors, often known as instrumental ADLs, is also essential. These two phrases are synonymous, as they both relate to abilities that are necessary for functioning in daily life. Caretakers of the elderly are more likely to use the phrase "activities of daily living,".

In contrast, those who work with people with disabilities will be more familiar with the term "adaptive behavior." To determine whether or not a person with ID has dementia, at least three longitudinal evaluations must be performed. This is because people with ID have more fluctuation in their exam scores than people without ID. It is preferable to wait and look into other potential reasons for deterioration when the diagnosis is unknown. Take care of any physical or sensory impairments and medication reviews before your subsequent cognitive evaluation.


Neuroimaging may be required as part of clinical investigations in complex cases or to exclude other causes of symptoms. However, for people with moderate to profound ID, neuroimaging may require sedation or sometimes a general anesthetic, which carries risks. In the absence of sedation, an MRI can provoke high anxiety for the person with ID. Providing them and their caregiver with information regarding what to expect ahead of time can be beneficial. Some scanning services offer familiarization programs before the actual scan. The brains of people with ID, especially those with genetic syndromes, can be structurally different from the general population, even in the absence of dementia, and this can complicate interpreting the results of imaging in these patients.

Possibilities Of An Alternative Diagnosis

In the same way that there is a range of medical conditions that can present similarly to dementia and need to be checked out, there are also a variety of conditions that can give similarly in the general population. Delirium falls into this group and is regularly observed in individuals with ID but is typically disregarded by medical professionals. Some potential differentials include conditions such as depression and other mental health concerns, thyroid illnesses, infections, loss of sensory perception, cancer, nutritional deficiencies such as a lack of folate or vitamin B12, sleep disorders, and reactions to medicines, including polypharmacy. Other than medical considerations, other aspects of a patient's life should also be considered. Compared to the general population, people with ID have a significantly greater frequency of illnesses that may be treated, including numerous of these conditions.