Some patients’ accounts raise tantalising questions about what happens inside a brain afflicted by dementia and whether cognitive abilities could possibly be restored, but these episodes are thus far still inexplicable, reports The Washington Post.
The day before her father died, one caregiver recalled he had his “final lucid experience”.
“When I was at his home, he was rarely awake and never awake. But we would talk to him, regardless,” she said. “This time, I went over to his bed and 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, 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.”
These are two of the accounts described in research by Joan M Griffin, a professor of health services research at the Mayo Clinic College of Medicine and Science who studies “lucidity” in people with dementia from the caregiver’s perspective.
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.
These occurrences raise tantalising 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 re-emerge. Researchers emphasised 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 characterise these events, possible neural mechanisms and the impact on caregivers, who have described their experiences to Griffin as “indelible moments”.
Sharon Lukert (71), of Wisconsin, who has early Alzheimer’s herself, participated in a Lived Experience panel by video. As a former nurse and hospice chaplain, Lukert has witnessed moments of lucidity in terminally ill patients and in her own mother, who died in January aged 95.
During one of her final visits, Lukert was chatting with her and straightening up her nursing home room when her mother suddenly looked at her with recognition and said, “I’m dying.”
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 to patients after witnessing these moments, choosing to “talk directly to the patient instead of to the caregiver” because they recognise 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.”
See more from MedicalBrief archives:
The challenge of studying paradoxical lucidity in dementia
Why cognitive fluctuations are common in all forms of dementia