I pray that you never have to watch someone you love die when afflicted with Alzheimer's disease or other dementia-related conditions. It's the most exhausting, wrenching, emotionally devastating experience you will ever have.
Forget "whatever doesn't kill us makes us stronger." Watching a loved one die after they've forgotten who you are and even who they are is a life-altering event that leaves scars on your soul for the rest of your life. You look at the parent or grandparent you've known all your life, and they simply aren't there anymore.
Some caregivers have reported an unusual occurrence near the end of a dementia-afflicted person's life. “I came over to his home, and he was rarely awake and never spoke at this time. But we talked and talked to him regardless,” said one daughter caring for her father. “I went over to his bed; he was awake, and I leaned into his view and said, ‘Hi, Dad!’ and, clear as a bell, he looked at me and said, ‘Hi, Honey!’ That’s the last he spoke.”
Another caregiver says of her dying mother, “The day she died, when we came to see her,” the caregiver recalled, "she took off her oxygen mask and said, ‘Well, hello, Joe’ to my husband. This was after months of not using our names and not making much sense.”
The anecdotal evidence has become so compelling that some researchers are examining the phenomenon from a scientific viewpoint. Joan M. Griffin, a professor of health services research at the Mayo Clinic College of Medicine and Science, studies “lucidity” in people with dementia from the perspective of the caregiver.
"Scientists refer to these moments of sudden clarity among individuals with Alzheimer’s and related dementias as 'paradoxical lucidity' or 'terminal lucidity' when they happen near death," writes Margaret Hetherman in the Washington Post. "But they don’t fully understand why these episodes occur, how often they occur, or what lessons can be drawn from them.
The lessons may profoundly affect the lives of living dementia patients. Is paradoxical lucidity a clue to unlocking long-buried cognitive function in a dementia patient's brain? Is there something that is happening in the brain near death that can be used to help dementia patients regain their identity and lives?
“We don’t know if there’s some sort of inflammation in the brain that temporarily subsides and opens up a neural network that finally wasn’t open before,” Griffin said. “Or a new pathway that’s found in the traffic jam of what’s going on in somebody’s brain, that gives you a fleeting moment.”
“It’s not supposed to be happening,” Griffin added.
Griffin is one of the first researchers to gather anecdotal evidence about paradoxical lucidity and try to frame the phenomenon for serious research.
In a major article, published in 2019, researchers George Mashour and Lori Frank and colleagues explored the possibility that even when dementia has severely damaged the brain, some cognitive abilities may not be entirely lost. Temporary changes in how remaining brain cells signal and communicate with one another could briefly allow abilities that had seemed inaccessible to reemerge. Researchers emphasized that the mechanisms for how that might happen remain unknown.
Newer studies are examining possible triggers — such as music, distress and medication changes — and using EEG devices that measure electrical activity in the brain while recording video and audio of the patient, to look for changes during lucid episodes.
Last week, Griffin joined researchers across neuroscience, social science and other disciplines at the Lucidity in Alzheimer’s and Dementia (LEAD) Network Consensus Conference at Johns Hopkins University in Baltimore. They looked at how to identify and characterize these events, possible neural mechanisms and the impact on caregivers, who have described their experiences to Griffin as “indelible moments.”
“My belief is that even when dementia makes it difficult for someone to communicate with the outside world — and maybe they’re seeing things differently — that the core of who they are, their basic being, is still there somewhere,” says Sharon Lukert, 71, of La Crosse, Wisconsin, who participated in the LEAD conference.
That's very possible. My mother, who suffered from Alzheimer's, never had moments of paradoxical lucidity, but there were times when I came to visit that I saw a spark of recognition in her eyes and a smile. But those were very rare moments. For the last three years of her life, she screamed her frustration out in an incoherent rage.
There is so much we don't understand about the brain, but we're making incredible progress in understanding the clinical mechanisms that lead to Alzheimer's disease and other dementia-related illnesses. Perhaps in understanding one, we will finally master the other and begin to lift the tragic burden weighing on our aging population.
