People living even with advanced dementia can have periods of remarkable clarity, often to the astonishment of carers and loved ones.
But researchers have found that rather than being an encouraging sign, a return of clarity – a phenomenon that has been reported for thousands of years – can be a sign that death is close.
I recall the last time I visited my great grandmother. She was 99, and living in a nursing home in country New South Wales. Having being warned by family she had deteriorated and probably wouldn’t remember us, we were pleasantly surprised. Not only did she recall who we all were, she talked to us candidly and with complete understanding about her life, and also about what we had been doing.
We left feeling she was doing well, so were shocked when, after returning to Sydney only a few days later, my aunt called to let us know she had passed away.
Could her period of lucidity, rather than being a positive sign, have been a warning that death was close?
A new study by the National Institute on Aging and the University of Michigan, looked into the phenomenon of ‘paradoxical lucidity’, the medical term given to a period of surprisingly normal behaviour in someone who has previously been thought incapable of understanding, communicating or connecting.
One of the report’s authors, Professor George Mashour MD PhD, said:
“PL refers to an episode of unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process.”
The researchers are calling for a closer examination of this area in order to better understand dementia, and in particular whether it could even be reversible.
“We’ve assumed that advanced dementia is an irreversible neurodegenerative process with irreversible functional limitations,” said Prof Mashour, professor in the department of anesthesiology in the neuroscience graduate program and director of the Center for Consciousness Science.
“But if the brain is able to access some sort of functional network configuration during PL, even in severe dementia, this suggests a reversible component of the disease,” he said.
There have been several studies of patients becoming surprisingly lucid while living with severe dementia, with most showing PL mainly occurs within several days of death.
One study of 49 cases described by carers, found that 43 per cent of PL episodes occurred within the last day of life, 41 per cent within 2-7 days before death, and 10 per cent within 8–30 days of death.
In a separate study, it was found that PL seems to take place within 1 or 2 days before death.
A study by researcher Alexander Batthyany followed 38 cases, and found 44 per cent occurred within 1 day before death, 31 per cent within 2 to 3 days, and 6 per cent within 4–7 days before death.
Similarly, in a study of end-of-life experiences, seven out of ten caregivers in a nursing home reported they had observed patients with dementia and “confusion” becoming lucid a few days before death.
In the 38 cases studied by Batthyany, 3 per cent of the lucid episodes lasted less than 10 minutes, 16 per cent lasted 10–30 minutes, 24 per cent lasted 30–60 minutes, 29 per cent lasted several hours, 11 per cent lasted one day, and 5 per cent lasted several days.
However, episodes of PL may also be brief, and last only a few moments. Patients or residents may only speak a few meaningful words in these situations, but they can demonstrate perfect comprehension and understanding.
In a statement from the University of Michigan, Prof Mashour admitted PL is a difficult field to study.
Sometimes episodes last only a few seconds, and of course there are important ethical considerations, such involving vulnerable patients in research and how observing PL may change the way caregivers interact with people living with dementia.
Observing a period of lucidity might provide comfort to carers and loved ones by “offering loved ones a potential channel for closure,” said the report’s co-author, Lori Frank PhD of the RAND Corporation and former Health and Aging Congressional fellow at the National Institute on Aging.
The researchers hope their paper will raise awareness of PL, as well as help to validate the experiences of many caregivers.
Mr Mashour said, “Science is now trying to be thoughtful and attentive to something that has long been reported.”
Have you ever had the experience of caring for someone with a serious illness and they suddenly ‘wake up’ and become much more understanding and able to connect and communicate with you? We’d love to hear your story.