Adults with intellectual and developmental disabilities (I/DD) are increasingly presenting to their health care professionals with concerns related to growing older. One particularly challenging clinical question is related to the evaluation of suspected cognitive decline or dementia in older adults with I/DD, a question that most physicians feel ill-prepared to answer. The National Task Group on Intellectual Disabilities and Dementia Practices was convened to help formally address this topic, which remains largely underrepresented in the medical literature. The task group, comprising specialists who work extensively with adults with I/DD, has promulgated the following Consensus Recommendations for the Evaluation and Management of Dementia in Adults With Intellectual Disabilities as a framework for the practicing physician who seeks to approach this clinical question practically, thoughtfully, and comprehensively.

To assist families and organizations in their planning for extended care that accompanies the diagnosis of dementia, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in the United States adopted a set of practice guidelines covering the period from when suspicions are aroused to when care ends with eventual death. These guidelines are drawn from the research literature as well as clinical experiences and demonstrated best practices. 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 NTG adopted the 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. In keeping with the National Plan to Address Alzheimer's Disease recommendations for earlier and more widespread efforts to detect possible symptoms, 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 nonpharmacological 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.

Epilepsy is common in people with intellectual and developmental disabilities (IDD). In adulthood, patients with IDD and epilepsy (IDD-E) have neurologic, psychiatric, medical, and social challenges compounded by fragmented and limited care. With increasing neurologic disability, there is a higher frequency of epilepsy, especially symptomatic generalized and treatment-resistant epilepsies. The causes of IDD-E are increasingly recognized to be genetic based on chromosomal microarray analysis to identify copy number variants, gene panels (epilepsy, autism spectrum disorder, intellectual disability), and whole-exome sequencing. A specific genetic diagnosis may guide care by pointing to comorbid disorders and best therapy. Therapy to control seizures should be individualized, with drug selection based on seizure types, epilepsy syndrome, concomitant medications, and comorbid disorders. There are limited comparative antiepileptic drug data in the IDD-E population. Vagus nerve and responsive neural stimulation therapies and resective surgery should be considered. Among the many comorbid disorders that affect patients with IDD-E, psychiatric and sleep disorders are common but often unrecognized and typically not treated. Transition from holistic and coordinated pediatric to adult care is often a vulnerable period. Communication among adult health care providers is complex but essential to ensure best care when these patients are seen in outpatient, emergency room, and inpatient settings. We propose specific recommendations for minimum care standards for people with IDD-E. Living with intellectual and developmental disabilities (IDD) and epilepsy (IDD-E) holds challenges for the individual, caregivers, and family. Activities of daily living and quality of life (QOL) can be affected by comorbid physical, mental, or cognitive disabilities, as well as epilepsy. Despite progress in care, many problems persist, including a failure to provide medical student and resident education about IDD-E populations. Current adult epilepsy services are often unable to adequately address the needs of this population, who face disparities in health care. Medical science has failed to provide evidence-based data on the care of patients with IDD-E. Randomized controlled trials are needed.This article, based on a workshop, highlights areas where a greater understanding of the issues and an application of current knowledge could improve the quality of care and QOL in the IDD-E population. We identify areas in which a change in clinical management should be considered and recommend minimum care standards that have excellent face validity but are not evidence-based, reflecting a paucity of rigorous research in this population.FOCUS ON MANAGEMENT CHANGE The following key questions can be asked of the neurology community, to which a positive answer would undoubtedly lead to major improvements in care of adult patients with