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

By: mc

mc — Mon, 22 Feb 2010 16:53:51 +0000

As a pediatric ICU resident, I once took care of a patient who had complications after surgery. This patient had a known developmental disability at baseline, but immediately on arriving in the unit was intubated and sedated. When the patient’s condition began to deteriorate, ECMO was considered, but we were completely dependent on the input from the family and the surgeon (who had been taking care of the patient for some years) to determine is this would be appropriate or not- they told us this patient had a good quality of life and that ECMO was appropriate. We were fortunate to have this input available, because without it we had no idea what the quality of life of this individual was.
Fortunately, this patient turned around and recovered without ECMO, but very scary to think about.

By: Jen

Jen — Wed, 17 Feb 2010 12:05:43 +0000

Excellent post. I have autistic children, and I often worry about what their medical care will be like when I’m no longer around to oversee it. Too many medical professionals consistently underestimate them, and more education around DDs could certainly assist with that.

By: Dr. J

Dr. J — Wed, 17 Feb 2010 04:48:24 +0000

A very thought-provoking piece that addresses an issue that very few of us in the medical profession even consider. Too often, we project our own views about the “quality of life” of an individual with a developmental disability. And as you described, the point on a person’s journey through life, when comparing someone with end-stage dementia to an individual with a static encephalopathy, is very different. We could certainly use more DD training in medical schools and residency programs to help new physicians understand this issue a little better.

By: drbell

drbell — Wed, 17 Feb 2010 00:15:14 +0000

Not only do I agree with this on a professional level but also on a personal level. I work with these issues professionally on a daily basis but also have experience with dealing with this issue in my immediate family. Many times I have marveled at the courage and dignity those with disabilites exhibit.

By: Marie

Marie — Tue, 16 Feb 2010 20:30:54 +0000

This is such a good reminder to never take ANY diagnosis for granted or at face value. As you so eloquently point out, it is an easy trap to fall in to, but the patient will suffer unnecessarily.

This especially timely for me personally. My 76 year old mother has been diagnosed with dementia. However, the ‘dementia’ didn’t start until literally the day she had her pacemaker changed in March of 2009. As a nurse, I believe she had an adverse event during the minor surgery. But my non-medical siblings and father have sadly accepted the diagnosis without question. They say “What difference does it make?”

It frustrates me beyond words because her treatment would be so different if she was correctly diagnosed. I believe her physicians are completely irresponsible. No one goes from functional to demented overnight without a catastrophic event. She now languishes in a long term care facility because it is too easy to label a 76 year old as demented if they are acting inappropriately than to take the trouble to explore what might have happened to her 11 months ago.

Thank you for a thought provoking and compassionate article.