The long-term care jackal: Not just a bad dream
“There was a hovering, insect-like jackal in our bedroom.”
That's a quote from comedian Mike Birbiglia's popular This American Life segment in which he talks about having REM sleep behavior disorder. Those with the condition act out dreams even though the brain remains in REM sleep mode. So Birbiglia tried to fight the dreamed-up jackal in his bedroom. More dramatic: dreaming that a heat-seeking missile was incoming, he jumped through the closed, second-story window of a hotel room.
Amazingly, Birbiglia survived that jump and won many fans—including me—telling his tale on the radio, in print and on the big screen. So I took notice of this Huffington Post headline last Friday: “REM Sleep Behavior Disorder Could Predict Dementia With Lewy Bodies, Study Finds.” "While it is, of course, true that not everyone who has this sleep disorder develops dementia with Lewy bodies, as many as 75% to 80% of men with dementia with Lewy bodies in our Mayo database did experience REM sleep behavior disorder,” said study researcher Melissa Murray, Ph.D. “So it is a very powerful marker for the disease." I went to the Lewy Body Dementia Association website to make sure I had the details about this type of dementia straight. That informative site confirmed my understanding that DLB is similar to Alzheimer's and Parkinson's, and my heart sank as I read touching personal stories about the toll of DLB.
Oh, no, I thought. Somebody tell Mike!
Of course, as Murray said, having REM sleep behavior disorder certainly doesn't mean you're going to experience DLB. And knowing you're at risk allows you to take specific preventive measures, like staying off certain antipsychotics. Still, I wondered how Birbiglia would respond to this study. And then I smiled, because I suspect his response would be characteristically frank and funny. And then I thought of a conversation I had recently with Bruce Chernof, M.D., the president and CEO of The SCAN Foundation and a member of the Congressional Commission on Long-Term Care. We must change the conversation around long-term care, dispelling myths and encouraging people to speak frankly and plan realistically for their eventual needs, Chernof said. This will help drive necessary systemic reforms at the same time it will improve the quality of life for people as they age.
That's when I had my brainstorm: Mike Birbiglia might be the perfect spokesman to encourage this type of conversation around long-term care, especially in his age cohort of those under 40. I think this because while few people have REM sleep disorder, we all have factors that put us at risk for a variety of diagnoses as we age. Also, the takeaway from Birbiglia's sleepwalking story is about denial. He experienced REM sleep disorder episodes for years, but he did not go to the doctor until he nearly died. His excuse for not going to the doctor: he was too busy. Doesn't a similar type of denial, driven in part by a fear of aging, prevent people from planning for their long-term care — and don't many of us make this same excuse, that we're too busy to worry about it? It's far in the future, we may reason. We can think about it tomorrow.
Birbiglia already has some chops as a spokesman, having worked in some unusual ways to raise awareness of sleep disorders and the importance of good sleep generally. Maybe it's a stretch to get him to take on the cause of long-term care as well, but I'd be happy to make a case for it over, say, lunch at the Polo Lounge (now that Birbiglia's made a movie I assume this is where he takes all his meetings).
So, if you're reading this Mr. Birbiglia … have your people call me.