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LOUISVILLE, KY – Older adults with intellectual and other developmental disabilities experience aging-related health issues earlier and more often than those in the general population.
Particular concerns include mobility limitations, osteoporosis/osteomalacia, sensory impairment, dental problems, obesity, hypertension, diabetes, dementia, and depression, according to Carl V. Tyler, Jr., MD, CMD.
However, aging trajectories vary according to etiology and phenotypic features of a particular developmental disability. Lifestyle, social, and environmental factors also play a role, Dr. Tyler said during a session entitled “Providing High-Quality Health Care to the Aging Adult with Developmental Disability.”
For example, individuals with Down syndrome, on average, will live into their 60s, and community-dwelling persons with intellectual and other developmental disabilities (IDD) other than Down syndrome are likely to live into their mid-70s, said Dr. Tyler, an associate professor at the Cleveland Clinic Lerner College of Medicine, Case Western Reserve University, Cleveland, OH, and director the DD-Practice Based Research Network at the university.
Previous institutional residencies, opportunities for healthy living, and access to health care all influence the trajectory, but certain conditions predict shorter life expectancy, he noted.
For example, those who have cerebral palsy with severe motor and functional impairments, those who have epilepsy with refractory seizures, and those who experience chronic upper respiratory or other infections tend to have a shorter life expectancy. Those with heart conditions, reduced mobility, eating and toileting dependency, and severe to profound levels of intellectual disability also have shorter life expectancy.
Respiratory disease is the leading cause of mortality in this population, followed by cardiovascular disease. Cancer is the cause of mortality in about 10% of persons with IDD.
The unique issues in individuals with IDD contribute to early mortality. For example, pneumonia risk may be increased due to immobility and recurrent aspiration, and restrictive lung disease can occur due to kyphoscoliosis or obesity. With respect to cardiovascular disease, acute coronary syndromes may go unrecognized because of communication impairments, and heart failure may occur due to unrecognized sleep apnea, congenital heart diseases, acquired valvular heart conditions, or untreated hypertension, Dr. Tyler said.
Among other factors that influence the aging process in older adults with IDD more so than in the general population are lack of physical activity, poverty, abuse and violence, poor nutrition, poor dental care, and inadequate social networks and education, he said.
Notably, a 2005–2006 needs assessment of older adults with IDD (mean age, 53 years) and their family caregivers showed that visual and hearing impairments were under-recognized, and that 20% to 25% of the 442 individuals included in the assessment had experienced decreased mobility and an increased need for assistance with activities of daily living in the prior year. Additionally, one in three had a mental health condition, and during the prior year, one in five received care in an emergency room, and one in eight were hospitalized.
It appeared that physical health needs were underreported, as the clients had an average of just 1.1 each, Dr. Tyler noted.
One hundred forty-five caregivers participated in the assessment (mean age, 70 years). About a third reported having fair or poor health, and more than half said they felt somewhat stressed by caregiving. About 30% said they would soon be unable to provide care.
More Elders With IDD
The findings of the needs assessment, and the information regarding differences in the aging IDD population vs. the general population, have important implications for providing care in the long-term care setting, especially given that the number of adults with IDD aged 60 years and older in the United States is expected to triple to about 2 million by 2020, Dr. Tyler said.
He outlined some general principles of geriatric medicine – incorporating the IDD-specific information – to keep in mind when caring for older adults with IDD:
Individuals become more dissimilar from each other as they age, he said, noting that there is even more heterogeneity among those with IDD given their baseline differences in health and function.
Abrupt declines in function should always be assumed to be the result of disease or illness – not the aging process. In those with IDD, diagnostic overshadowing – an assumption that a symptom is due to the underlying developmental disability – is common, but consideration should be given to the possibility of comorbid pathology.
Similarly, declines in adaptive functioning are often misattributed to dementia, and care should be taken to avoid this error.
Disease and illness often present in atypical ways. Expressions of distress may be presented behaviorally rather than verbally by individuals with developmental disability, for example.
“Too often, people have a medical illness, they manifest their physical distress behaviorally, they get labeled with a psychiatric diagnosis, they get placed on antipsychotics, antidepressants, or anxiolytics, and the underlying medical diagnosis is not found. Then they get side effects from the psychoactive meds,” Dr. Tyler said, adding that “this is a population in desperate need of good medical diagnoses.”
Dr. Tyler reported having no relevant financial relationships.