The problem of declining function in an older person with Down syndrome (DS) is one of the most common reasons for visits to the Denver Adult Down Syndrome Clinic (DADSC). Alzheimer's is a progressive neurologic disorder that results in memory loss, personality changes, global cognitive (thinking) dysfunction, and functional impairments. Many caregivers are aware that autopsy studies have shown that virtually all individuals with DS have microscopic changes in their brain tissue that look just like the brains of individuals with Alzheimer's. From these data, many have concluded that dementia occurs in virtually all individuals with DS. But some experts believe that symptomatic Alzheimer's dementia may be no more common in individuals with DS than in the typical population. But when it does occur, it manifests itself 15 to 20 years earlier than in typical individuals. So individuals with DS who are in their 50s and have a decline in function may have Alzheimer's. However, in typical individuals, and even more so in individuals with DS, many other medical, psychological and social issues can also cause these same symptoms. So part of what we do at the DADSC is explore whether other, treatable issues might be causing the decline in function.

One of the issues that must always be explored in a person with declining function is depression. Some individuals with DS have the verbal skills to express feelings of sadness and hopelessness. In others we have to look for other clues such as frequent crying, isolation, or loss of interest in previously enjoyable activities. Depression can be quite hard to distinguish from dementia, and, of course, they can coexist. Sometimes only a trial of an antidepressant medication can answer the question as to what component of the symptoms are attributable to depression.

Loss of sensory input due to poor vision and or hearing can cause a decline in function. Not infrequently these conditions can be challenging to treat because the individual with DS does not want to wear glasses or hearing aids or is not a good candidate for cataract surgery, for example. Still, medical providers and caregivers should look for these problems and attempt to correct them as much as possible.

Some other medical issues which should be explored are an underactive thyroid gland (hypothyroidism) and wheat sensitivity (celiac disease). These illnesses can be easily screened for with blood tests and are treatable.

Another common medical cause of decreased function is obstructive sleep apnea. This is a condition in which the tissues of the throat block the airway during sleep causing pauses in breathing which may or may not have been noted by caregivers. Many patients with sleep apnea are noted to snore heavily (though not every one who snores has sleep apnea, and not everyone with sleep apnea snores). This abnormal breathing interferes with sleep enough that individuals may experience abnormal drowsiness and have an overall decline in function. The best way to test for sleep apnea is with a sleep study done in a sleep lab. Most major hospitals have sleep labs. In my experience, the sleep lab at National Jewish Hospital is especially good at working with individuals with intellectual disabilities. Sleep apnea is treatable, and the treatment can dramatically improve function.

Conditions which cause pain or discomfort may also lead to a decline in function, and we all know that individuals with DS frequently do not express pain symptoms the way typical individuals might. Occult dental disease, sinusitis, constipation, urinary tract infections or joint pain should be looked for and treated.

Abnormalities of the brain or spinal cord, while fairly uncommon, can also cause symptoms virtually indistinguishable from Alzheimer's disease. A condition of too much fluid around the brain ― normal pressure hydrocephalus ― can cause dementia, urinary incontinence and abnormalities of gait. Compression of the spinal cord due to instability in the neck bones (atlantoaxial instability) or to narrowing of the space for the spinal cord (cervical stenosis) are potentially treatable. At times the patient's symptoms and physical exam can be enough to "rule out" these conditions, but in some cases doctors might recommend further testing such as CT or MRI scans.

Myriad social issues can also cause changes or declines in function: the loss of a parent or caregiver, changes at work or at the day program, new living arrangements, etc. At the DADSC, our social worker Heather Luhers and I question clients and caregivers extensively to explore what social changes might have led to alterations in behavior. Frequently, the social changes cannot be remedied, but we can usually give advice on how to help the individual with DS adapt to the changes.

All of us move a little more slowly as we age, but dramatic declines in function are not a normal part of aging. Individuals with DS who have sudden or dramatic declines in their abilities should have a thorough medical and psychological evaluation. Many declines are treatable and individuals with DS should be expected to be healthy and functional into old age.

For much of this information I am indebted to Dennis McGuire, Ph.D. and Brian Chicoine, M.D. and their book Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges published by Woodbine House Publishing.