Introduction to the special issue on aging and end of life.

03Original 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, Mérineau-Côté, Ouellette-Kuntz, Tassé, 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, and Factor's article, “Self-directed Support: Impact of Hiring Practices on Adults with Intellectual and Developmental Disabilities and Families” examines caregiver reports of differential experiences and outcomes based on the type of personal support worker hired (i.e., parents, siblings, other relatives, friends, and agency staff). Heller and colleagues report that caregiver satisfaction with the support worker, self-efficacy in managing support workers, and caregiver mental health varied significantly based on the type of worker employed. Sibling support workers were associated with the highest caregiver satisfaction, highest self-efficacy in managing support workers, and greater mental health. Physical health and daily choice making of the adults with ID also differed considerably by type of support worker. Physical health was highest when the support worker was the parent, although choice making was highest when the support worker was an agency staff member.Research regarding children and young adults with autism spectrum disorders (ASD) is a prominent topic in the field, but aging issues in this area has garnered considerably less attention. Perkins and Berkman's article, “Into the Unknown: Aging with Autism Spectrum Disorders” reviews the emerging literature across several quality of life domains in middle-aged and older adults with ASD. Life expectancy, comorbid physical and mental health issues, ASD symptomatology, and social, recreational, and vocational outcomes are considered. They conclude that although aging with ASD undoubtedly presents challenges, there was also evidence that positive outcomes are attainable, and they offer suggestions on how to optimize the aging process in adults with ASD.The intrinsic value of remaining productive and undertaking activities that give value, meaning, and structure to our daily lives is evident whether we are employed, retired, or pursue voluntary activities. Individuals with IDD have increased employment opportunities and therefore confront similar challenges in the transition from working life to retirement as experienced by the general population. In “Active Aging for Individuals with Intellectual Disability: Meaningful Community Participation Through Employment, Retirement, Service, and Volunteerism,” Fesko, Hall, Quinlan, and Jockell consider how employment experiences may change with increasing age. They promote the need for retirement planning and activities that support active aging and discuss specific strategies, service options, and policy considerations to meet those needs.The final article is on the universally experienced topic of end of life. Friedman, Helm, and Woodman's article “Unique and Universal Barriers: Hospice Care for Aging Adults with Intellectual Disability” observes that access to the benefits of palliative and hospice care remains a challenge for all, but people with ID face additional challenges. Their review highlights specific barriers for people with ID including delay in the diagnosis of life-limiting conditions, lack of hospice knowledge of ID, and ethical dilemmas related to undertreatment. They conclude that greater collaboration among hospice and palliative care workers, families, and other stakeholders is crucial to improve care.The articles in this issue highlight the progress of knowledge in this field as well as the significant gaps that remain. The field of aging in general is extremely multifaceted, but aging with ID increases that complexity by virtue of unique social, economic, and psychological issues. Aging by etiology of ID even further diversifies outcomes. The apparent lack of emphasis on aging with Down syndrome and dementia in this special issue is noteworthy. It reflects a positive divergence of research attention within the ID field to delineate the aging experience beyond the original catalyzing topics. Pressured by the current realization of demographic influences projected decades ago, we contend that aging has become a mainstream subject of current research in the ID field. The need for convergence in aging and disability research also is being mirrored in the need to consolidate service provision and policy. The topic of aging has truly come of age! We challenge the field to remain energized and focused on aging issues and to reflect on the fact that more time is spent in middle-aged and older adulthood than in childhood across the lifespan. We still need greater understanding of the current issues to ultimately design better support services and ensure that aging individuals experience a productive and healthy older adulthood.This special issue was a primary objective of the Aging and End of Life Task Force that was convened during the tenure of former AAIDD President Dr. Joanna Pierson. We are indebted to Dr. Pierson and the AAIDD Board of Directors for their encouragement to pursue this aim. We sincerely thank Leonard Abbeduto, editor of AJIDD, for his unwavering guidance and enthusiastic support for this special issue. We are very grateful to Lisa Culp-Neikirk (AAIDD staff editor) and Salatha Helton (Dr. Abbeduto's editorial assistant). We also thank all the authors for their prompt attention to timelines and feedback and for submitting their work for inclusion in this special issue. Finally, we thank the reviewers for their comments and insightful feedback that improved every paper herein.

American journal on intellectual and developmental disabilities, 2012 · doi:10.1352/1944-7558-117.6.439