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It has been a year since I first posted an article on Terminal Lucidity (TL). The term itself refers to someone who is dying and has been uncommunicative and unresponsive, but prior to death, becomes alert, lucid, and verbal. Family members often view this as a miracle, and as a result, often expect that their loved one will make a full recovery, only to discover that death is not far behind.
Dr. Alexander Batthyany, one of the primary researchers of TL, reports that to date, they have found that these episodes can last anywhere from a few minutes to several days. Even if the episode lasts a few seconds or minutes, the dying will still say something relevant and meaningful.[1]
There are so many questions that are yet to be answered about TL. Why do some people have these experiences, and others do not? How is it possible that people with different disease processes, such as dementia, severe mental illness, or other neurodegenerative disorders, all can experience the same phenomenon?
At the current time, there does not appear to be any logical scientific answer. As a result of its closeness to death, many see TL as a spiritual experience and group it with other end-of-life phenomena, such as deathbed visions and near-death experiences.
As one might expect, researching TL is a difficult process given the many technical and ethical challenges it presents. However, according to Dr. Alexander Batthyany in a personal communication, exploration continues. Most recently, the focus has been on TL’s role in cognitive decline and dementia.
The National Institute on Aging is involved in the funding of the project. The hope is that there might be some underlying mechanism that could be found to give us a better understanding of dementia and whether or not it might even be reversible. It has always been assumed that dementias are not reversible. From the available data, it certainly appears as though it is possible for some with the severe neurodegenerative disease to have a reversal in functioning and once again become lucid and communicative, even if only for a brief period of time.
This research has the potential to “eventually point to novel mechanisms underlying cognitive decline, identify potential preventive or therapeutic approaches for individuals with dementia, offer more effective strategies for caregivers, and perhaps even expand our understanding of the nature of personhood and consciousness.”[2]
At the present time, much of the thinking about TL and dementia is speculative. What is clear is the impact this experience has on the family members. Dr. Batthyany has shared some of his initial findings with me on the families, their experiences, and comments. He has identified five recurring themes or topics that the dying talk about with family members during those precious last moments of lucidity. These are reminiscing, preparations, last wishes, body concerns, such as hunger or thirst, as well as an awareness of their impending death.
Dr. Batthyany states that in the majority of cases, to date, more than one topic is usually discussed by the dying. Examples of some conversations follow:
“My grandfather was in palliative care for dementia. He had severe cognitive decline over the months preceding his death. There was no recognition of family or friends, paranoia, hallucinations, confusion, social withdrawal, refusal of food and drink, mumbling incoherent speech, and a lack of ability to toilet or shower himself. He awoke and began talking in a clear voice with obvious recognition of family and surroundings. He was able to inquire about family and friends that he had not been able to recognize previously. He asked that the books he had borrowed months ago be returned to their owner. He said he wished his death would come quicker. After 20 minutes, he became tired, fell asleep, and died shortly afterward.”
“She was her old self. Talkative, laughing, she thanked me for the card and plant that she seemed to not even recognize just days before. She requested a chocolate latte. She drank every drop. She reminisced about her sisters, her children, and grandchildren. For the first time in a long time, she seemed happy and not in pain.”
The following are also comments from family members about the impact the experience had on them:
“My mother’s lucidity before dying was a wonderful gift which made her passing easier to accept.”
“It was wonderful to have those final moments with them. All the pain and suffering they endured disappeared, if only for a short time. It helps so much with the grieving process.”
“A very emotional and rewarding experience.”
“It was a profoundly wonderful gift and a blessing to me.”
“Everyone was shocked and confused, but happy to have that time with her.”
According to the Alzheimer’s Association, there are approximately 50 million people worldwide living with dementia today.[3] The World Wide Health Organization (WHO) states that by 2050, there will be a global epidemic of 152 million people.[4] The grief this disease has caused to those involved is already incalculable.
Today, much of the research with dementia has focused on finding medication in order to slow or control symptoms. TL is a very exciting new area for research which could potentially impact the lives of millions of sufferers and their families. After all, we know that it is possible for some to regain cognitive functioning at the end of life, but now the hard part is to figure out how. Until then, TL will continue to be a phenomenon cloaked in mystery.
Dr. Betthany is continuing to conduct research on terminal lucidity. If you have witnessed this phenomenon, he requests that you fill out the survey at this link.
References
1) Mashour, G.A., Frank, Lori, Batthyany, A., Kolanowski, A.M., Nahm, M, Schulman-Green, D, Greyson, B. Pakhomov, S. Karlawish, and Shah, R.C. (2019) Paradoxical Lucidity: A Potential Paradigm shift for the Neurobiology and Treatment of Severe Dementias. Alzheimer’s and Dementia 15, 1107-1114.
2) Eldadah, B.A., Fazio, E.M., and McLinden, K.A. (2019). Lucidity in Dementia: A Perspective from the NIA. Alzheimer’s and Dementia. 15(2019), 1104-1106.
