Elizabeth A. Perkins

Aging adults with intellectual disabilities.

Increasing age is but one of manyfactors associated with disparities in health accessandoutcomes,alongwithsex,nonwhiterace,lowersocio-economic status, geographic proximity to health profes-sionals,andhavingadisability.Moreover,withinthepopu-lation of those with disabilities, persons with intellectualdisabilities (ID) are further disadvantaged.

Into the Unknown: Aging with Autism Spectrum Disorders

Research investigation of older adults with autism spectrum disorders (ASD) noticeably lags behind studies of children and younger adults with ASD. This article reviews the current literature regarding a range of quality of life outcomes of aging adults with ASD. Studies that have addressed life expectancy, comorbid physical and mental health issues, ASD symptomatology, and social, residential, and vocational outcomes are reviewed. Research challenges in identifying older cohorts of adults with ASD are also discussed, and notable areas of concern are highlighted. Overall, aging with ASD does present challenges, but there is also evidence that positive outcomes are attainable. The article concludes with brief recommendations on how to optimize the aging process for individuals with ASD.

Family Caregivers of Adults With Intellectual and Developmental Disabilities: Outcomes Associated With U.S. Services and Supports

Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.

The Compound Caregiver: A Case Study of Multiple Caregiving Roles

Many parental caregivers of an adult with intellectual/developmental disabilities often undertake the role for their entire lifetime. However, there is a lack of recognition of the increasing likelihood that they may become caregivers to their own parents or other family members. A case study highlighting this scenario is presented. Three themes emerge for these unique “compound caregivers” that may result in adverse outcomes in well-being; reduction in social network/support, difficulty of prioritizing caregiving demands, and a reduction in stress resiliency. More research of compound caregivers is warranted. Interventions aimed at reducing the burden felt by compound caregivers could be particularly beneficial during the compound caregiving episode, and could ensure the continuance of the primary caregiving role.

Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices

Increasing numbers of adults with intellectual disabilities (ID) are living into old age. Though this indicates the positive effects of improved health care and quality of life, the end result is that more adults with ID are and will be experiencing age-related health problems and also exhibiting symptoms of cognitive impairment and decline, some attributable to dementia. Early symptoms of dementia can be subtle and in adults with ID are often masked by their lifelong cognitive impairment, combined with the benign effects of aging. A challenge for caregivers is to recognize and communicate symptoms, as well as find appropriate practitioners familiar with the medical issues presented by aging adults with lifelong disabilities. Noting changes in behavior and function and raising suspicions with a healthcare practitioner, during routine or ad hoc visits, can help focus the examination and potentially validate that the decline is the result of the onset or progression of dementia. It can also help in ruling out reversible conditions that may have similar presentation of symptoms typical for Alzheimers disease and related dementias. To enable caregivers, whether family members or staff, to prepare for and advocate during health visits, the National Task Group on Intellectual Disabilities and Dementia Practices has developed guidelines and recommendations for dementia-related health advocacy preparation and assistance that can be undertaken by provider and advocacy organizations.

Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review:

Adults with intellectual and/or developmental disabilities (IDD) often experience health disparities. To address disparities, Healthy People 2020 includes specific disability and health goals focused on improving health care access. The study’s purpose was to review the literature exploring health care access for adults with IDD to identify opportunities for occupational therapy research and practice. A scoping review was completed of articles discussing health care access among adults with IDD in the United States. Thirty-seven articles met the inclusion criteria. Results are framed using the ecology of human performance theory identifying person and environmental issues affecting health care access of adults with IDD. Opportunities exist for occupational therapy to improve participation and health of adults with IDD through engaging in research and practice efforts addressing health care access. Occupational therapy could develop interventions to establish skills and abilities and recommend changes to the health care environment.

A Preliminary Investigation of Risks for Adverse Outcomes of Relationship Seeking on Social Network Sites (SNS): A Descriptive Study of Women Over 50 Seeking Relationships on MySpace in Hillsborough County, Florida

In contrast to younger populations, little attention has been paid to the increase in seniors using Internet-based venues to find relationships and the potential risk for adverse outcomes this poses. This study examined data collected via an online survey from 45 ethnically diverse women aged 50+ “seeking relationships” on MySpace. The majority of women reported a relationship with someone they met online (85%). They also reported experiencing adverse events including financial exploitation (40%), threats (55%), and physical harm (38%) by someone they met online at levels greater than traditional relationship seeking in the general population. Directions for future research are explored.

Coping with Caregiver Stress

Caregivers of people with intellectual and developmental disabilities (IDD) often face many challenges in their caregiving role. Whether they are paid professional caregivers (i.e. formal), or family/friends (i.e. informal) their responsibilities can be complex and become overwhelming. This chapter describes challenges faced by caregivers generally, and specifically for those care for people with IDD, including physical, financial, social, as well as the psychological outcomes that have been reported. The authors also consider the changing focus of caregiving roles across the lifespan, and pay particular attention to the needs of family caregivers and direct support professionals. The authors then describe how stress can be experienced and what strategies can assist caregivers to cope with their roles. Specific recommendations for how both informal and formal caregivers can best be supported in their roles by health care professionals are offered. Approaches to adopt if burnout is suspected are also considered. As some caregivers cope admirably despite challenges and changes in the amount of support received, the chapter concludes with a discussion of beneficial aspects of caregiving.

Introduction to the Special Issue on Aging and End of Life

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

Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities

A specially commissioned working group produced a report on caregiving, intellectual and developmental disabilities (IDDs), and dementia for the National Institutes of Health–located National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.