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Terminal lucidity: why do loved ones with dementia sometimes ‘come back’ before death?

<div class="theconversation-article-body"><em><a href="https://theconversation.com/profiles/yen-ying-lim-355185">Yen Ying Lim</a>, <a href="https://theconversation.com/institutions/monash-university-1065">Monash University</a> and <a href="https://theconversation.com/profiles/diny-thomson-1519736">Diny Thomson</a>, <a href="https://theconversation.com/institutions/monash-university-1065">Monash University</a></em></p> <p>Dementia is often described as “the long goodbye”. Although the person is still alive, dementia slowly and irreversibly chips away at their memories and the qualities that make someone “them”.</p> <p>Dementia eventually takes away the person’s ability to communicate, eat and drink on their own, understand where they are, and recognise family members.</p> <p>Since as early as the <a href="https://pubmed.ncbi.nlm.nih.gov/21764150/">19th century</a>, stories from loved ones, caregivers and health-care workers have described some people with dementia suddenly becoming lucid. They have described the person engaging in meaningful conversation, sharing memories that were assumed to have been lost, making jokes, and even requesting meals.</p> <p>It is estimated <a href="https://pubmed.ncbi.nlm.nih.gov/20010032/">43% of people</a> who experience this brief lucidity die within 24 hours, and 84% within a week.</p> <p>Why does this happen?</p> <h2>Terminal lucidity or paradoxical lucidity?</h2> <p>In 2009, researchers Michael Nahm and Bruce Greyson coined the term “<a href="https://pubmed.ncbi.nlm.nih.gov/21764150/">terminal lucidity</a>”, since these lucid episodes often occurred shortly before death.</p> <p>But not all lucid episodes indicate death is imminent. <a href="https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.13667">One study</a> found many people with advanced dementia will show brief glimmers of their old selves more than six months before death.</p> <p>Lucidity has also been <a href="https://www.sciencedirect.com/science/article/pii/S0167494311001865?via%3Dihub">reported</a> in other conditions that affect the brain or thinking skills, such as meningitis, schizophrenia, and in people with brain tumours or who have sustained a brain injury.</p> <p>Moments of lucidity that do not necessarily indicate death are sometimes called <a href="https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.12579">paradoxical lucidity</a>. It is considered paradoxical as it defies the expected course of neurodegenerative diseases such as dementia.</p> <p>But it’s important to note these episodes of lucidity are temporary and sadly do not represent a reversal of neurodegenerative disease.</p> <h2>Why does terminal lucidity happen?</h2> <p>Scientists have struggled to explain why terminal lucidity happens. Some episodes of lucidity have been reported to occur in the presence of loved ones. Others have reported that <a href="https://psywb.springeropen.com/articles/10.1186/s13612-014-0024-5">music can sometimes improve lucidity</a>. But many episodes of lucidity do not have a distinct trigger.</p> <p><a href="https://www.sciencedirect.com/science/article/pii/S0300957223002162">A research team from New York University</a> speculated that changes in brain activity before death may cause terminal lucidity. But this doesn’t fully explain why people suddenly recover abilities that were assumed to be lost.</p> <p>Paradoxical and terminal lucidity are also very difficult to study. Not everyone with advanced dementia will experience episodes of lucidity before death. Lucid episodes are also unpredictable and typically occur without a particular trigger.</p> <p>And as terminal lucidity can be a joyous time for those who witness the episode, it would be unethical for scientists to use that time to conduct their research. At the time of death, it’s also difficult for scientists to interview caregivers about any lucid moments that may have occurred.</p> <p>Explanations for terminal lucidity extend beyond science. These moments of mental clarity may be a way for the dying person to say final goodbyes, gain closure before death, and reconnect with family and friends. Some believe episodes of terminal lucidity are representative of the person connecting with an afterlife.</p> <h2>Why is it important to know about terminal lucidity?</h2> <p>People can have a variety of reactions to seeing terminal lucidity in a person with advanced dementia. While some will experience it as being peaceful and bittersweet, others may find it deeply confusing and upsetting. There may also be an urge to modify care plans and request lifesaving measures for the dying person.</p> <p>Being aware of terminal lucidity can help loved ones understand it is part of the dying process, acknowledge the person with dementia will not recover, and allow them to make the most of the time they have with the lucid person.</p> <p>For those who witness it, terminal lucidity can be a final, precious opportunity to reconnect with the person that existed before dementia took hold and the “long goodbye” began.<!-- Below is The Conversation's page counter tag. Please DO NOT REMOVE. --><img style="border: none !important; box-shadow: none !important; margin: 0 !important; max-height: 1px !important; max-width: 1px !important; min-height: 1px !important; min-width: 1px !important; opacity: 0 !important; outline: none !important; padding: 0 !important;" src="https://counter.theconversation.com/content/202342/count.gif?distributor=republish-lightbox-basic" alt="The Conversation" width="1" height="1" /><!-- End of code. If you don't see any code above, please get new code from the Advanced tab after you click the republish button. The page counter does not collect any personal data. More info: https://theconversation.com/republishing-guidelines --></p> <p><a href="https://theconversation.com/profiles/yen-ying-lim-355185"><em>Yen Ying Lim</em></a><em>, Associate Professor, Turner Institute for Brain and Mental Health, <a href="https://theconversation.com/institutions/monash-university-1065">Monash University</a> and <a href="https://theconversation.com/profiles/diny-thomson-1519736">Diny Thomson</a>, PhD (Clinical Neuropsychology) Candidate and Provisional Psychologist, <a href="https://theconversation.com/institutions/monash-university-1065">Monash University</a></em></p> <p><em>Image credits: Getty Images</em></p> <p><em>This article is republished from <a href="https://theconversation.com">The Conversation</a> under a Creative Commons license. Read the <a href="https://theconversation.com/terminal-lucidity-why-do-loved-ones-with-dementia-sometimes-come-back-before-death-202342">original article</a>.</em></p> </div>

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Lucid dying - what some patients experience as they’re going through CPR

<p>A study of people who received cardiopulmonary resuscitation (CPR) in hospital has found that some of them had what’s being dubbed “lucid experiences of death,” accompanied by spikes in brain activity.</p> <p>The research found that roughly one in five CPR survivors described unique experiences, including feeling separated from their bodies, observing the events without pain or distress, and a meaningful evaluation of life.</p> <p>These experiences were different to hallucinations, dreams, or CPR-induced consciousness, according to the researchers, who presented their findings at the American Heart Association’s Scientific Sessions 2022 conference.</p> <p>The international team of researchers collected data on 567 patients whose hearts stopped beating, in UK and US hospitals, between May 2017 and March 2020.</p> <p>While they were all treated immediately, fewer than 10% of these people were ultimately discharged from hospital.</p> <p>In addition to hearing the patients’ experiences, the researchers observed spikes in brain activity – specifically, in so-called gamma, delta, theta, alpha and beta waves.</p> <p>In some cases, these activity spikes were observed when CPR had been going on for up to an hour.</p> <p>“These recalled experiences and brain wave changes may be the first signs of the so-called near-death experience, and we have captured them for the first time in a large study,” says lead investigator Dr Sam Parnia, an intensive care physician and associate professor in the Department of Medicine at New York University Langone Health, US.</p> <p>“Our results offer evidence that while on the brink of death and in a coma, people undergo a unique inner conscious experience, including awareness without distress.”</p> <p>While plenty of people have personal accounts of near-death experiences before, they’re difficult to judge empirically.</p> <p>“These lucid experiences cannot be considered a trick of a disordered or dying brain, but rather a unique human experience that emerges on the brink of death,” says Parnia.</p> <p>It may be linked to disinhibition – the release of barriers in the brain as it shuts down.</p> <p>The researchers are keen to investigate the lucid dying experiences further.</p> <p><strong>This article originally appeared on <a href="https://cosmosmagazine.com/health/lucid-dying-cpr/" target="_blank" rel="noopener">cosmosmagazine.com</a> and was written by Ellen Phiddian.</strong></p> <p><em>Image: Shutterstock</em></p>

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