Aging with Down Syndrome

family concept (focus point on hands of the woman)

October is National Down Syndrome Awareness Month. Down syndrome occurs when a person has a full or partial extra copy of chromosome 21. It is the most commonly occurring chromosomal abnormality. One in every 691 babies in the United States is born with Down syndrome.

People with Down syndrome face extra challenges, intellectually and physically. There is a wide range of intellectual abilities in people with Down syndrome but most are in the mild to moderate range of intellectual disability. People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

The life expectancy for people with Down syndrome has increased dramatically over the last few decades. In 1983, the average life expectancy was 25 years old. Today, the average is over 60 years old. With increased life expectancy have come new problems associated with aging. People with Down syndrome experience age-related health challenges such as joint pain, cataracts, and hearing loss at a much younger age than their typically developing peers. They also experience Alzheimer's type dementia at a much higher rate and younger age.

The Developmental Disabilities Administration strives to develop and implement public policies that will promote individual worth, self-respect, and dignity such that each individual is valued as a contributing member of the community.

Living conditions have also changed over the last 30 years. In 1985, most persons with Down syndrome lived in institutional settings, some in horrific conditions. Today, most people with Down syndrome live in their own homes, in the community, with varying degrees of support from living alone with full independence to having 24-hour supervision and assistance. Many people live with parents or other family members.

As people age, their housing, supervision, and assistance needs change. This may be because aging parents can no longer provide the support they once did. Or changes in needs may occur because of changes associated with aging, such as loss of mobility or loss of skills due to dementia.

It is not clear why adults with Down syndrome develop dementia at a higher rate and at an earlier age than their typically developing peers. A gene for Alzheimer's dementia has been found on chromosome 21, the same chromosome that has an extra copy in Down syndrome. Further research with the human genome may lead to a fuller understanding of this association.

Like everyone, risk of dementia increases with age for individuals with Down syndrome. However, post-mortem studies have shown that almost all adults with Down syndrome who are 40 years or older at the time of death have protein deposits in their brains that are the hallmark of Alzheimer's dementia. For reasons not yet clear, although almost all individuals have the physical markers of dementia, not all show symptoms. About 75 percent of individuals 65 years or older have symptoms of dementia, almost six times the national average for the general population.

Individuals with dementia often have difficulty remembering recent conversations, names or events. Apathy and depression can also be early symptoms of Alzheimer's dementia. Later symptoms include impaired communication, poor judgment, disorientation, confusion, behavior changes and difficulty speaking, swallowing and walking. In persons with Down syndrome, although memory loss and forgetfulness occur, more common early signs of dementia are loss of overall functioning, less interest in being social, and increased behavioral problems such as tantrums and aggression. Adult onset seizures, sleep disturbances, and loss of coordination can also be signs of dementia for adults with Down syndrome.

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Changes in personality, behavior, and functional level related to dementia are usually gradual and are often not recognized until they are a serious problem, putting the individual in danger or at risk of losing staff, housing, or other services.

Diagnosing dementia in a person with Down syndrome can be difficult because of the challenges involved in assessing thinking-skill changes in those with intellectual disabilities. It is very important to document baseline adult function early, before age 35. Because adults with Down syndrome may have a different baseline than typically developing adults, it can be hard to assess changes without a personal baseline to compare to.

Often the first indicator of dementia is a change in day-to-day function. There may be reduced enthusiasm for daily activities once enjoyed, loss of interest in social interactions, or change in personality or behavior. A person may no longer want to go out of his or her home, even to do enjoyable activities. Other factors that may cause changes in functioning should also be investigated. Some of the many stressors that may cause changes in a person's thinking and behavior include thyroid problems, urinary tract infections, depression, ear and sinus infections, psychological or physical trauma, and sleep apnea.

If other factors have been ruled out and dementia is a concern, consider professional assessment by a Mental Health/Developmental Disabilities specialist. MH/DD specialists are mental health professionals who have specialized training and experience in working with persons with intellectual disabilities. Ideally, a specialist assessing a person with Down syndrome should have expertise both in developmental disabilities and in dementia. It may be necessary to take a collaborative approach with more than one professional.

The population of individuals with Down syndrome who are age 60 or older is growing rapidly. Additionally, persons with Down syndrome who are between 40 and 60 years old also share many challenges that face seniors. Caregivers and health care professionals may not have thought about how to adapt to the physical and cognitive changes that come with aging, especially in people as young as 40. Parents of people with Down syndrome were often told that their children would have a relatively short lifespan and are now unable to continue as caregivers as they also age.

How can we—friends and family members of people with Down syndrome, caregivers, health care professionals, and the community—help address the needs of these individuals? By recognizing that aging people with Down syndrome face many of the same challenges of other older adults, although they may face them sooner or express them in slightly different ways. By not minimizing or ignoring the signs of dementia in younger individuals. By adapting to changing needs to allow people to continue to live in familiar settings. And by recognizing when the current situation is not working and when we need expert help.


Contributor Evelyn Dreyer, ARNP is with the Developmental Disabilities Administration, Region 2, Washington State DSHS. For more information, visit www.dshs.wa.gov/dda.