Don’t fall into the dementia trap when treating a developmental disability

by Lockup Doc

In addition to correctional psychiatry, I spend about half of my professional time treating patients with developmental and intellectual disabilities (mental retardation). The majority of my patients have severe or profound mental retardation and are completely nonverbal.

Over the years I have observed that when many of them are admitted to the hospital for acute medical or surgical problems, because they are severely cognitively and functionally impaired, they are treated as though they have terminal illnesses. The treatment approach is often akin to that for patients with end-stage Alzheimer’s Disease.

By definition, a developmental disability (DD) occurs before the age of 18 and is a static condition. Most of my DD patients have genetic syndromes or have suffered from perinatal brain injuries. They have been far behind the curve in meeting developmental milestones, and many never will be able to walk, talk, or have the motor or communication skills or level of independence that most of us enjoy.

However, despite these deficits, each of them has unique strengths. Even those who require significant assistance with their activities of daily living still seem to be able to enjoy various activities in their lives. It would be easy to judge them as having little quality of life, but the longer I work with this population, the more I believe it to be a mistake for the developmentally normal to judge the quality of life of the chronically disabled.

On the surface, these patients are obviously severely impaired, and in many ways some of them do not look much different from those with severe dementia. The key point, though, is that their developmental disabilities are not progressive or terminal illnesses.

In contrast to those with developmental disabilities, patients with end-stage Alzheimer’s Disease have a progressive and ultimately fatal disease. In advanced Alzheimer’s Disease, patients often become incontinent of bowel and bladder, become nonverbal or minimally communicative, have difficulty eating or stop eating altogether, and eventually require assistance with all activities of daily living.

Primary care physicians are familiar with this latter scenario since Alzheimer’s Disease is fairly common. Often their end-stage dementia patient previously will have been a person with normal intellectual functioning who was quite independent. Considering hospice and withholding treatment can be the right decisions in advanced dementia. We often think of such patients as having very little quality of life because of the dramatic losses that have been inflicted by their dementing illness. They clearly are not the same people they used to be.

However, since severe and profound mental retardation are much less common than dementia, and because those with severe developmental disabilities may, on the surface, resemble those with advanced dementia, I believe it is easy to mistakenly think of the two as being in the same end-of-life category even though they are not.

When this mistake occurs, DD patients may have necessary diagnostic and therapeutic interventions withheld even though their physicians may be very competent and believe that they are doing the right thing by not treating these “obviously declining” patients too aggressively.

The key to avoiding falling into the dementia trap when treating a patient with a severe developmental disability is to learn as much as possible about the patient’s baseline level of functioning. For example, if a particular patient has always been nonverbal, incontinent, and gastrostomy-tube fed but does not seem to be losing skills, then the diagnostic and treatment approach likely will be similar to that for any other non-terminal patient. However, if the patient is obviously declining relative to baseline, then a more conservative approach may make sense.

The author is a psychiatrist who blogs at Lockup Doc.

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