Accounts raise tantalizing questions about what happens inside a brain afflicted by dementia and whether cognitive abilities could possibly be restored.

The day before her father died, one caregiver recalled he had his “final lucid experience.”

“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,” she said. “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 whose mother had extreme difficulty with memory, attention and focus reported a similar moment of clarity. “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.” 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. But they don’t fully understand why these episodes occur, how often they occur or what lessons can be drawn from them. “It’s not supposed to be happening,” Griffin said in an interview.

These occurrences raise tantalizing questions for researchers about what is occurring inside a mind afflicted by dementia — including whether it might one day become possible to access cognitive abilities believed to have been lost, or even reverse some aspects of the condition.

“We don’t know if there’s some sort of inflammation in the brain that temporarily subsides and opens up a neural network, finally that 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.” 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.” Lukert said she didn’t have the wherewithal in that moment to say, ‘Yes, you are, and how are you doing?’ — and all those things we might want to have in that conversation. Before she could gather herself, her mother was gone again.

“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,” Lukert says.

After such fleeting moments of profound connection, Griffin has seen caregivers rethink how they interact with someone with dementia and begin to “acknowledge the fact that this person is a living human being in front of them and has their own agency.”

She says some physicians have changed how they talk with patients after witnessing these moments, choosing to “talk directly to the patient instead of to the caregiver” because they recognize that the patient “might be processing some information.” Griffin also wants people to understand that not all episodes of lucidity mean that death is imminent. That said, because these moments can catch people off guard, as Lukert’s did, some people might have later twinges of regret, wondering if they could have better seized the moment.

She says some physicians have changed how they talk with patients after witnessing these moments, choosing to “talk directly to the patient instead of to the caregiver” because they recognize that the patient “might be processing some information.” Griffin also wants people to understand that not all episodes of lucidity mean that death is imminent. That said, because these moments can catch people off guard, as Lukert’s did, some people might have later twinges of regret, wondering if they could have better seized the moment.

They might look back and think of all the things they could have said — things they imagine might have made it easier for their loved one. On how we might learn to do things better, Griffin says we don’t need the neuroscientist or brain mapping to tell us, “This is your time to make that connection.” During the panel, Lukert shared a poem that set the tone for the rest of the conference. She penned “Cherished Regret” two weeks after her mother’s passing.

“... Suddenly, clarity shines through her eyes, Familiar warmth lights up her face …” “I watch her intelligence rise up with awe. Till she disappears, unreachable, once again …”