“Rush! Best rock music group everrrr! Your favorite band is Rush! Yeahhhh!” The patient, Mr. H, wriggled in front of us, unable to contain his joy for Rush. At one point, his social worker described an episode where he had punched a staff member. The patient started laughing hysterically, which made me want to laugh, too.
Mr. H was a developmentally delayed 27-year old presenting for a check up from his nursing home. There wasn’t much of a history or even symptoms to go off, but I learned a lot from that one afternoon of shadowing a doctor who worked with developmentally delayed adults.
Carolyn Tinglin has a great article about what medical providers should know about working with developmentally delayed adults, and gives tips on how to examine these patients and recognize signs of illness that might not be obvious.
She points out that a lot of developmentally delayed adults don’t communicate in the way we’re used to: describing their pain, listing their medications, listening to our explanations for what the plan of treatment will be.
Instead, a longer, drawn-out grunt might be a sign of pain. Rocking back and forth might be a sign of “self-stimming,” repetitive movements that some patients use to calm themselves (kind of like humming or tapping fingers on a table). Working with developmentally delayed patients trains the mind to recognize non-verbal cues and be more nuanced in interpreting body language. Wouldn’t you agree that these are skills that any doctor should strive to improve?
When working with developmentally delayed adults, it’s also important to think of them in their whole context. Are they coming from a nursing home? Are they being cared for by family? Who knows them best? Who is legally responsible for making medical decision on their behalf? These are questions that as medical providers, we fail to answer for our patients who are so-called competent in making their own decisions. But it’s essential for patients with developmental delays–and it makes us see the bigger picture of care.
The AAFP has a useful set of guidelines for taking care of these patients (although they use the outdated term “mental retardation”). There are certain health problems, such as obstructive sleep apnea, swallowing problems, and managing gynecologic stuff that can arise.
One powerful thing I was reminded of was how individuals with “delay” can be productive and happy in their own lives. Case in point: one of the patients who shared with me that she sang in a band at her nursing home that was pretty good, like, better than me.