Characteristics of Older people with an Intellectual Disability Discussion
UR Key Characteristics of Older people with an Intellectual Disability Discussion
After reading the article that is attached on aging and intellectual disability, summarize the article, with an emphasis on:
Key health characteristics of older people with an intellectual disability
Barriers and challenges related to these characteristics
How these health characteristics of older people with an intellectual disability might impact or require change in the healthcare system and adult care system
What these health characteristics mean for individuals with an intellectual disability and their families as the individuals age
AGING IN RARE INTELLECTUAL DISABILITY SYNDROMES Elisabeth M. Dykens1,2* 1 Vanderbilt Kennedy Center for Research on Human Development; One Magnolia Circle, Nashville TN 37203 2 Departments of Psychology and Human Development, Psychiatry and Pediatrics Vanderbilt University Medical Center This review highlights several methodological challenges involved in research on aging, health, and mortality in adults with rare intellectual disability syndromes. Few studies have been performed in this area, with research obstacles that include: the ascertainment of older adults with genetic versus clinical diagnoses; likelihood that adults will not receive adequate health care and referrals to genetic specialists; cohort differences related to generational and treatment effects; and increased mortality and selective survival biases. Even so, aging in Prader-Willi and Williams syndromes are reviewed as they reveal new insights into the phenotypic expression and treatment options for older adults with these disorders. The review ends with recommendations for future research that takes better advantage of genetic advances, changes in adult phenotypes, and ties across syndrome-specific research silos. Although aging in rare neurodevelopmental disorders is barely on the research landscape, the field stands to C 2013 Wiley Periodicals, Inc. Dev Disabil learn much from these older adults. V Res Rev 2013;18:75–83. Key words: aging; intellectual disability; Prader-Willi syndrome; Williams syndrome; adult intervention S cant data exist on the healthy or typical aging processes of adults with intellectual disabilities and rare genetic disorders. Healthy aging aside, even the life expectancies or causes of death have yet to be rigorously studied in adults with most rare syndromes. In contrast to these conditions, aging in Down syndrome has been relatively well studied, especially as it relates to high rates of Alzheimer’s disease in this population (see Zigman, this issue). This article first identifies several inter-related reasons for the paucity of published research on aging or adulthood in rare intellectual disability syndromes. Two syndromes are then briefly reviewed that exemplify the inherent challenges in studying aging in these groups, and how both phenotypic complexities and the aging process complicate this work. Last, recommendations are made for future work on aging in rare syndromes. These ideas build on accomplishments to date, but also require new ways of thinking for the scientific and professional communities who study and serve individuals with these rare disorders. Why Hasn’t Aging in Rare Intellectual Disability Syndromes Been Studied? Note that this question specifically targets aging and not other features of rare neurodevelopmental disorders. Indeed, ‘ 2013 Wiley Periodicals, Inc. in a thorough analysis of which neurodevelopmental disorders get researched and why, Bishop [2010] found that, when prevalence is taken into account, the number of publications on rare conditions far exceeds those for more common neurodevelopmental disorders, primarily because rare disorders often have more severe clinical manifestations. These findings are virtually identical in the field of neurology, where severity as opposed to prevalence was also associated with increased numbers of publications on rare, life-threatening neurological diseases [Al-Shahi et al., 2001]. Thus, severe neurodevelopmental disorders are indeed studied, typically by geneticists, neuroscientists, and pediatricians [Bishop, 2010]. The bulk of this work, however, is focused on affected infants and children, or the genetic and neurobiological mechanisms that underpin these severe conditions. A lifespan approach has yet to be used, leaving it unknown how, when, or why the aging process impacts the health or quality of life of older adults with these disorders and their families
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