Mohammed Morad

Health trends from an international sample of older adults with intellectual and developmental disabilities

Abstract Background: The aim of this study was to compare the health status data of 4449 adults with intellectual disabilities (ID) aged 40 years and older, from three international sites and identify cross-cultural trends in the prevalence of age-associated organ system morbidities. Study group: Data from samples of older adults with ID in Taiwan, Israel and New York State, United States, collected in three previous studies, were combined for analysis using multivariate logistic regression analyses. Methods: All data were collected using the Rochester Health Status Survey (RHSS), a survey instrument designed to collect data on demographics, morbidity, and health services usage of adults with ID through chart-review by a medical professional. Results: Irrespective of site, the likelihood of the presence of auditory problems, gastrointestinal, cardiovascular, infectious disease, eye, musculoskeletal, and respiratory conditions in people with ID increased with age and the likelihood of the presence of dermatological, endocrine, and psychiatric conditions did not increase with age. Conclusions: Prevalence of organ system diseases with increasing age in people with ID seems to be similar to expected patterns in reference population data for people without ID. The data suggest that it could be useful to increase vigilance, preventive measures, and appropriate screenings for people with ID, similar to efforts that have been incorporated in general practice guidelines. Such efforts may be useful in the delay of onset and/or reduction of the prevalence of some morbidities and secondary disability-related conditions in people with ID. Further studies are needed in these areas.

Palliative Care and End-of-Life Issues

Today most children born with intellectual disability will enter adulthood. Some with the rarest syndromes or multiple associated disease will die in infancy or childhood, and here it is important that they will receive the same end-of-life service as the general population. Today, changing demographics that has resulted in a growing number of people with intellectual disability living into old age and suffering from the same diseases as the general aging population is creating a need for more organized palliative care for this population and to educate professionals to handle end-of-life issues with the persons with intellectual disability themselves dying, their families, and also care staff, who are not always prepared for these events.

Parents and Siblings

This chapter looks at the effects on the family unit with the birth of a child with a disability. This event is always a crisis for the family, but with early and sensitive care and intervention for the involved child, the parents, and siblings much can be done to help the family. This support can help the family to adjust and become positively involved in the care and development of the child, even if that child is different and in need of special care. Siblings seem to have a positive role in the relationship and also concerning long-term support.

General Medical Care for Individuals with Developmental Disabilities

In the past, most individuals with intellectual disability (ID) died at a young age due to their additional medical problems, congenital malformations, and infections, but today an increasing number of these children live into adulthood and we see the first generation of aging people with intellectual disability. This trend has resulted in not only pediatricians but also now adult physicians involved in the management of this population. Older people with ID have the same needs as other older people do, and they are subject to the same age-related impairments and illnesses. Moreover, because many disabled individuals live together with their families, the burden is double because the family members are also aging and, with time, will not be able to continue their caregiving. Medical needs from pediatric to adult care can be met by enrollment in universal health care or programs. Periodic health assessments and health care should be normalized and provided as an overall system of supports when needed or as assistance provided for the adequate self-directed use of general or specialty health services. Risk assessments and health reviews should be part of the individual’s life plan and provided to detect diseases and conditions that could compromise longevity. This field of medicine also needs to evaluate the applicability of a new discipline of life span developmental medicine to lead in interdisciplinary care, health-care education, service delivery, and research for people with intellectual disability within an academic framework.