Healthcare Issues in Aging Adults with Intellectual and Other Developmental Disabilities
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Introduction
Many adults with intellectual and other developmental disabilities (IDD) are achieving life expectancies commensurate with the general population. Although they are survivors, they often have complex physical and mental health needs that have not been previously identified or treated. Geriatrics healthcare professionals may have received little formal training in their care, and may experience difficulty in distinguishing normal from atypical aging trajectories in this population.1 The following is an overview of healthcare issues related to the aging adult with IDD.
Definition of Developmental Disabilities
Federal law defines a developmental disability as a severe chronic disability manifesting before age 22 due to physical and/or mental impairments, resulting in “substantial functional limitations in three or more of the following areas of major life activity: (1) self-care; (2) receptive and expressive language; (3) learning; (4) mobility; (5) self-direction; (6) capacity for independent living; and (7) economic sufficiency.”2
The most common type of developmental disability is intellectual disability, which has replaced the outdated pejorative term mental retardation.3 Other common developmental disabilities include autism, cerebral palsy (CP), certain chromosomal and genetic conditions (eg, Down syndrome, fragile X syndrome), and multiple congenital anomalies. Some individuals with seizure disorders, learning disorders, attention-deficit/hyperactivity disorder, and visual or hearing impairments also meet the definition for having a developmental disability. These conditions are commonly grouped together as “IDD” (intellectual and other developmental disabilities).
Epidemiology and Life Expectancies
Until the latter part of the 20th century, most individuals with IDD lived markedly shortened life expectancies in institutional residences. Now, aging adults with IDD are living to late life in the community. An estimated 641,000 adults with IDD age 60 years and older were residing in the United States in 2000, and it is expected that this group will increase threefold by 2020.4 As persons with IDD are living longer, geriatrics healthcare providers need to learn about the characteristics, healthcare needs, and common clinical issues facing this population.
Classification of IDD
Every decade, the American Association on Intellectual and Developmental Disabilities (AAIDD), formerly the American Association of Mental Retardation (AAMR), periodically re-examines and refines its definition of intellectual disability, with the most recent revision published in 2002.5 The comprehensive assessment of the individual with intellectual disability involves more than just intelligence quotient (IQ) testing, and includes measures of adaptive functioning, assessment of strengths, and linkage of limitations with corresponding supports in order to optimize function.6
Assessment
Person-First Approach
As with all other clinical encounters, proper evaluation begins with an introduction of the clinician to the patient. Patients with IDD often are seen with caregivers who may provide most of the history, but the patient should remain the focus of the interaction. Even the most cognitively limited patient should be addressed by name and be included in the evaluation as much as possible.
The proper nomenclature for referring to a patient with a disability is with “person-first language” (ie, “a person with Down syndrome” rather than “Down syndrome patient”).7 This recognizes the patient as an individual while alerting the clinician to specific problems that may be prevalent in that group.
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