Introduction to the Special Issue on Aging and End of Life

Abstract

It has been 8 years since the American Journal on Intellectual and Developmental Disabilities (AJIDD) published a landmark two-issue series on the aging (volume 109, numbers 2 and 5). The first issue was edited by Marsha Mailick Seltzer. The confluence of aging with Down syndrome and Alzheimer’s disease was a major catalyst to prompt concern and ignite gerontological interest in this field. Thus, not surprisingly, the preponderance of articles was on topics including risk factors and screening and assessment of dementia in individuals with intellectual disability (ID) with or without Down syndrome. There were also several articles regarding the physical fitness and nutritional status of aging individuals with Down syndrome. The second issue, edited by Tamar Heller, specifically focused on family and service system supports. Prominent themes were caregiver issues, service provision, and service utilization for older adults. The challenges of the increasing population of older adults with intellectual and developmental disability (IDD) require continued description, investigation, advocacy, and intervention. In our call for submissions, we stated, ‘‘There is still a pressing need for further research to delineate physical and mental health concerns associated with aging and the end of life. There is also a great need to study the applicability of aging with IDD in broader contexts.’’ This special issue indeed meets this undertaking by including three empirical research articles regarding (a) prevalence and risk factors associated with falls, (b) chronicity of health conditions compared with the general population, and (c) satisfaction of caregivers with self-directed support models. Three articles review and discuss the present literature with respect to (a) aging individuals with autism spectrum disorders, (b) the transition to retirement and maintenance of meaningful activities on older adulthood, and (c) challenges related to provision of hospice services at the end of life. This issue is more eclectic than the prior published ones pertaining to aging. While each of the articles in this issue poses information on distinct topics, they all are timely and interrelated in their presentation of relevant issues affecting the daily lives of many older adults with IDD. The consequences of sustaining a fall-related injury, along with the complexity of recovery in older adults is a problematic, if not life-threatening, reality to many aging adults with IDD. Knowledge and mitigation of risk factors are key to providing safer settings and avoidance of major injuries. Hsieh, Rimmer, and Heller’s article, ‘‘Prevalence of Falls and Risk Factors in Adults with Intellectual Disability’’ examined data from the Longitudinal Health and Intellectual Disability Study. They report that almost a quarter of the sample had experienced a fall within the last 12 months and that the prevalence increased with increasing age. Risk factors included having arthritis, a seizure disorder, and difficulty lifting/carrying greater than 10 lb; taking more than four medications; using walking aids; and being female. Issues related to health disparities for underrepresented groups, including those with IDD, affect services access and provision as well as health outcomes. Morin, Merineau-Cote, OuelletteKuntz, Tasse, and Kerr’s article, titled ‘‘A Comparison of the Prevalence of Chronic Disease Among People with and Without Intellectual Disability,’’ documents disparity in the rates of certain chronic disease in people with ID compared to the general population. They report that individuals with ID had higher rates of thyroid disorder and heart disease. However, the prevalence of arthritis, migraines, back pain, and food allergies was lower in people with ID compared with the general population. The authors express concern that the lower prevalence might reflect reduced identification and diagnosis of these conditions, because of the need for subjective reports of discomfort for the conditions that were associated with pain. The prevalence of diabetes and asthma did not differ significantly; these conditions have less subjective diagnostic parameters used for assessment and treatment. Family support often comprises a blend of informal and formal caregivers that may change over time. Heller, Arnold, van Heuman, McBride, AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES