Some dementia patients exhibit periods of lucidity closer to the end of life. These phenomena prompt scientists to search for a key to understanding the disease.
One caregiver reported that his father experienced a 'final lucid moment' before death. He recalled that despite rare wakefulness and silence, they were able to converse with him. When the caregiver approached him in bed and greeted him, he looked at her clearly and replied, 'Hi, dear!'—it was the last thing he said.
Another caregiver recounted a similar moment of clarity in his mother, who suffered from severe difficulties with memory, attention, and concentration. On the day of her death, when they visited her, she removed her oxygen mask and addressed the caregiver's husband, saying, 'Well, hi, Joe.' This occurred after months during which she had not used their names or spoken coherently.
These cases are part of research conducted by Joan M. Griffin, Professor of Medical Research at Mayo Clinic College of Medicine and Science. She studies the phenomenon of 'lucidity' in people with dementia from the perspective of those who care for them.
Scientists refer to these sudden moments of clarity in individuals with Alzheimer's disease and related dementias as 'paradoxical lucidity' or 'terminal lucidity' if they occur shortly before death. However, the causes of these episodes, their frequency, and the lessons that can be drawn from them remain incompletely understood.
Griffin noted that such events 'should not happen.' They pose intriguing questions for researchers about what is occurring in the mind affected by dementia. Among the questions is whether lost cognitive abilities can ever be restored or even some aspects of the disease reversed.
She hypothesized that this might be related either to a temporary reduction in brain inflammation, which opens up previously inaccessible neural networks, or to the discovery of a new pathway in the brain's 'traffic jam,' providing a fleeting moment of awareness.
The last moments of patients are being studied to determine if dementia can be reversed. In a major paper published in 2019, researchers George Mashour, Lori Frank, and colleagues examined the possibility that cognitive functions may not be completely lost even with severe brain damage. They suggested that temporary changes in how remaining brain cells signal and communicate could allow abilities that seemed unattainable to reappear briefly.
Researchers emphasized that the mechanisms of this process remain unknown. More recent studies are focusing on possible triggers, such as music, stress, and medication changes. EEG devices, which measure brain electrical activity, are used to look for changes during lucidity episodes, alongside video and audio recording of the patient.
Last week, Griffin participated in the LEAD Network Consensus Conference on 'Lucidity in Alzheimer's Disease and Dementia' at Johns Hopkins University in Baltimore. There, discussions focused on how to identify and characterize these events, what the potential neural mechanisms might be, and what impact they have on caregivers, who described their experiences to Griffin as 'indelible moments.'
Sharon Lukert, a 71-year-old resident of La Crosse, Wisconsin, has early-stage Alzheimer's herself and participated in a 'Life Experience' session via video link. As a former nurse and hospice chaplain, Lukert observed moments of lucidity in severely ill patients and in her own mother, who passed away in January at the age of 95. During one of her last visits, she was talking to her mother and tidying up the room in the nursing home when her mother suddenly looked at her with recognition and said, 'I am dying.'
Lukert admitted that at that moment, she could not respond with, 'Yes, you are dying, and how are you feeling?'—or all the other things she wished she could say in such a conversation. Before she could gather her thoughts, her mother slipped back into confusion. Lukert believes that even when dementia hinders communication with the outside world, 'the essence of the person, their core being, is still somewhere present.'
Following such fleeting moments of deep connection, Griffin observed caregivers beginning to reevaluate their interaction with people with dementia, starting to 'acknowledge the fact that they are dealing with a living person who possesses their own will.' Some doctors have changed their approach to communicating with patients after witnessing such moments, preferring to 'speak directly to the patient rather than to the caregiver,' as they understand that the patient 'may be processing some information.'
Griffin also insists that people must understand that not all episodes of lucidity signify imminent death. Nevertheless, because these moments can catch people off guard, as happened with Lukert, some may later experience regret, wondering if they could have better utilized the moment or what they could have said to ease their loved one's suffering.
In Griffin's view, improving interaction does not require neuroscientists or brain mapping to state: 'This is your time to establish this connection.' During the panel, Lukert shared a poem that set the tone for the entire conference. She wrote 'Testamentary Regret' two weeks after her mother's death: '... Suddenly through her eyes shines clarity, Familiar warmth illuminates her face... I watch her intellect rise with reverence. As she vanishes, unreachable, again...'