Down Syndrome and Aging

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

Aging brings challenges – and the resilience to deal with them Modesto Bee “There are neural changes,” said Mario Garrett, a San Diego State University gerontology professor and a blogger on aging for Psychology Today.

Following Your Spouse to Death

Caregiving is dangerous.

As early as the 1960s, the British psychiatrist Colin Murray Parkes reported that after nine years of bereavement among 4,486 widowers, 55 years of age and older, 213 died during the first six months of bereavement. This death rate was 40% above the expected rate for married men of the same age.  Often referred to as the “widowhood effect”—where the surviving spouse dies soon after—it is an example of how intimate relationships define what is important in life.  Death following spousal death among older adults is estimated at between 30% and 90% in the short term, and around 15% in the long term.

The months and sometimes years leading to death are stressful to both partners. In 1999 Richard Schulz and Scott Beach compared 392 caregivers aged 66 to 96 years who were experiencing stress looking after their spouse reported that they were twice as likely to die within the four years of the study then 427 similar older adults who were not providing care.  And there seems to be worse outcomes when their spouse dies.

In one of the largest studies, Nicholas Christakis and Paul Allison in 2006 looked at 518,240 Medicare married recipients. During the nine years of the study, 49 percent husbands and 30 percent wives died. The consequence on their surviving partner was dramatic. Overall male survivors were more likely to die than females. What is surprising from this study—for both male and female--was that the risk of death was the highest when the spouse died of dementia compared to other causes (20 and 16 percent higher mortality for males and female respectively).

One argument, that attempts to understand this proximity of death, is the shared environment. For example, people who die of heart disease are more likely to have a lifestyle that promotes such diseases and—the argument goes—this is likely shared with their spouse (e.g. smoking, high fat diet, no exercise.) In addition, older people are more likely to have diminished resilience.  This argument loses its strength in light of the work of Mairi Harper and her colleagues from the University of York, England.

These researchers looked at 738 bereaved Scottish parents who had stillbirth or death of their child in its first year of life. They found that the bereaved parents are more than twice as likely to die in the first 15 years after their child's death than non-bereaved parents. Unlike older adults, females tend to suffer worse consequences.  Bereaved mothers were more than four times as likely to die in the first 15 years. Although this rate decreases with time, the effect was still seen 35 years after the bereavement.

A consistent observation of increased longevity is that these unique older adults are accepting of changes that happen to them. They interpret negative events as part of their world.  It seems however that sometimes the death of a loved one destroys that part of the world that is important, especially when your children die before you.

© USA Copyrighted 2014 Mario D. Garrett