As the French film “Amour” has beautifully explored, becoming
ill with cognitive impairment is difficult enough for white upper middle class.
It is that much harder for people who have less support, resources, or are
physical or intellectual challenged already.
One such group that rarely receives attention in gerontology
is the group with Intellectual and Developmental Disabilities (I/DD). A new
phenomenon has developed. Because I/DDs are surviving childhood in greater
numbers, estimates suggest that their life expectancy has increased from 18
years in 1930 to 59 years in 1970 to 66 years in 1993. Nowadays, life expectancy for those with mild
I/DD is fast matching that for the general population. Although men are still
lagging behind women in terms of life expectancy gains, the gains are positive
across the spectrum.
Even those with severe I/DD are living longer—some living up
to 80 years of age—doubling the number of older adults with I/DD in the United
States from 641,860 in 2000 to 1.2 million by 2030. In a commentary in 2010 Elizabeth Perkins and
Julie Moran, report that within the aging baby boomers, those with I/DD are however
further disadvantaged. For various reasons, adults with I/DD are more likely to
develop chronic health conditions and they are more likely to develop them at
younger ages. Some disabilities exacerbate specific diseases in older age. For
example older adults with Down syndrome experience higher rates of cataracts,
hearing loss, hypothyroidism, osteoporosis, epilepsy, sleep apnea and an
elevated risk for Alzheimer’s disease. For more than twenty years, Vee Prasher has
been reporting that those with Down syndrome are not only more likely to get
dementia (15-40%) but they get it earlier (estimated at 51.3 years of age) and
the disease affects their mental capacities faster. The cause is still not
completely clear although there are both external factors—diet, exercise,
mental stimulation, ecological/environmental—and internal factors—genetics and
neural capacity, among other causes.
In a research study looking at I/DD’s health in fourteen
European countries—Meindert Haveman from University of Dortmund, Germany and
his colleagues reported that low levels of physical activity and high caloric and
fatty diets are probably to blame for the development of obesity. Obesity then
promotes ensuing problems with cardiovascular disease, diabetes, constipation,
osteoporosis, incontinence, and arthritis.
The brunt of caregiving seems to remain with the family. Over
75% of people with I/DD live with families, and more than 25% of family care
providers are over the age of 60 years and another 38% are between 41-59 years.
Aging parents lovingly looking after their children. Most studies address the incredible disconnect
between available and appropriate services and needs of this aging cohort. And
rightly so.
But the disconnect is not that this group is unique. The
disconnect is that it exposes—because this population has such intense needs—the
severe lack of policy for end-of-life and for aging in general. Policy seems baffled
by the process of aging and the inevitability of death, which is most often preceded
by ill-health. People with intellectual and developmental disabilities expose
this disconnect because we did not expect them to age. The sad corollary of
this is that we all do not expect to
age, get ill and die ourselves.
© USA Copyrighted 2014 Mario D. Garrett
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