Ever hear vague stories about miraculous awakenings in people with severe dementia, just before they die? Another blogger, Tony, scooped me on this one: he described a meeting at the US National Institute of Aging about this phenomenon, called “paradoxical lucidity (PL).” The academic journal Alzheimer’s & Dementia has a Theoretical Article and report of the meeting online (still not finalized, “in press”). Kudos to Tony and the WordPress Reader where I found it; these are just a few comments below.
In cancer hospice care, “terminal lucidity” is the phenomenon when someone who had been unresponsive becomes more responsive and is able to have significant communications before dying. Most cancer patients don’t have long-standing losses of neurologic function, as seen in late-stage dementia. This report is specifically about persons who had been considered by doctors, family and caregivers to have had permanent losses in cognition. Being able to demonstrate lucid moments with severe dementia is even more amazing, which is why the article authors retain the term “paradoxical lucidity”.
Fascinating item in the report: the authors describe two series, one of 49 (some very old) case reports and the other of 38 more contemporary cases (evidently unpublished). An aggregation of descriptions show that when paradoxical lucidity is observed and noted, it usually happens in the last day or two of life, and may last minutes to hours; a few outliers lasted days to weeks. The cases are anecdotal; although rare in the big scheme of things, it’s amazing that series exist.
To supply context, there is a section about related paradoxical arousal reactions to some medicines, even anesthetics, which are expected to have an opposite effect. Of course, most pediatricians know that meds used to sedate children might also make a few “hyper,” which we attributed to “disinhibition”. The paper also mentions related “near death experiences,” has speculations of possible mechanisms, discusses possible research avenues, and moving forward. They discuss ethical considerations.
The authors suggest that dementia patients might retain “preserved consciousness and selfhood,” like those in a persistent vegetative state, even in the setting of irreversible brain damage from whatever specific diagnosis. For me, that phrase was eye opening and provocative, in a good way. The authors imply that understanding the phenomenon might create paradigm shifts in neuroscience and in caregiving, especially end-of-life care.
The movie Awakenings, based on stories by the late neurologist Dr. Oliver Sacks, was about patients affected by an unusual condition, “encephalitis lethargica” and some who had a dramatic response to levodopa. The folks seemed to be frozen stiff, as if their muscles were locked up, and this medication freed them. [I highly recommend Sacks’ books The Mind’s Eye, Musicophilia and River of Consciousness, which I did with library audiobooks]
This phenomenon shows that humans are still mysterious creatures (or conversely, our current medical knowledge base has some holes), and that a few brains presumably full of amyloid and neurofibrillary tangles and tau can still allow a seemingly miraculous breakthrough of communication demonstrating selfhood. Perhaps a better understanding of PL will yield a way to turn on lucidity, without needing that whole dying thing!
Thanks for writing on a topic I’ve often thought about it, but didnt realize that there is a body of research on this topic. Thanks also for the links for further reading.
I appreciate your concluding sentence. Indeed why wait till the last minute for this ‘miracle’ to happen. How can the stimulus be generated for an earlier intervention? Looking forward to more information and waiting with hope.
My mother had paradoxical lucidity for about 3 days prior to her passing. It was an amazing gift, and it led me to rethink my assumptiona about dementia.
Thanks so much for your comment! I’m used to thinking of the brain in a mechanical way, with strokes or tumors causing specific and predictable problems, but trauma, drugs, poisons and infections can cause global or patchy problems. What is amazing is that sometimes there may be a “short circuit,” more figurative than literal, that can activate a dormant area. I’m guessing that investigators in the arena of paradoxical lucidity are still documenting cases, for those who want to share details.
Hi Cathy,
My colleagues and I are studying paradoxical lucidity. Could I talk to you about your experience? I can be reached at jasonkarlawish@gmail.com.
thanks,
Jason