Jun 08, 2020

Moments of clarity in those with dementia may be a sign death is near

 

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?

‘Paradoxical lucidity’ – a period of surprising clarity

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.”

Could dementia be reversible?

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.

Periods of clarity before dying has been well studied

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.

Length of lucid period can be a few seconds or days

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.

A challenging area of study

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.

Research to validate the experience of caregivers

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.

 

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  1. Hi Caroline,

    I read your iStock-960999788
    Moments Of Clarity In Those With Dementia May Be A Sign Death Is Near —with great interest and left with a thought I’d like to share.

    It is possible such LUCIDITY episodes could be due to God allowing for the patient time to communicate with loved ones or time given for these help to remunerate their past memories? If so, pray they are in the moments of happiness only of events in their lives past !!!!

    Just curious !!!!!!!!

    1. Indeed . I have been working in Dementia Unit in a village for two years and I agreed with the studies cause even me I have experienced the PL with our dementia residents.

  2. My husband was very sick with dementia and other illnesses, he hadn’t communicated for several months. This day while I was walking him in his wheelchair he said that he couldn’t do it anymore. Although I was shocked I told him that he didn’t have to do it anymore that he could just rest. Nothing more was said and he died two weeks later.

    1. My father has Alzheimer’s and last May was hospitalized with pneumonia and suspected Covid. He subsequently tested negative for Covid but was in hospital for 6 days. Due to Covid we were unable to visit so I rang regularly to make sure he was okay. On the second day he was remarkably lucid compared to how he normally is. He could tell me everything he’d eaten, what he’d been watching on tv and normally he wouldn’t remember. Interestingly he also mentioned some lights or figures outside the door of his room. I wondered at the time if it was the oxygen or drug treatment he was on but now I wonder if he was close to death. He recovered from pneumonia and is still alive but maybe he was close at that time.

      1. Miriam my mother has had 3 similar periods of lucidity during dementia and they all involved changes in care setting (e.g., going to a hospital or respite stay), and in addition there was a ‘stressor’ of some type involved. The stress part is key, because she has changed settings without that element as well, and has not experienced lucidity. Her lucidity usually lasted 2-3 days, but this time she’s over a week. I have been looking for research. There is some like this article on terminal or paradoxical lucidity, but I have seen some other accounts that were not in patients close to death. (In my mom’s case – she’s up showering, getting dressed, calling friends, playing with grandchildren – she has not done these things in years due to the apathy part of her dementia.). I have read of exercise during physio stimulating it as well. I was just sharing as I know experiences like the ones with your father are rare and precious. I think our cases demonstrate that the ‘terminal’ aspect is not essential to lucidity – it can be triggered by illness, exercise, ‘stress’, etc.

  3. After days and weeks of rare communication and after Mom stopped eating or drinking and we knew the end was near, I walked into moms room and she said “ Hi sweetheart!” Just as plain as day. Those were her last words and it is something I will always remember. So your article and findings make a lot of sense to me.

  4. The photo attached to this story took me aback because it looks EXACTLY like my granddad! That may have been what caught my attention, but then I read the article. It was very informative.

  5. My mother has Alzheimer’s, breast cancer, seizures and type 2 diabetes, and is unable to communicate in any meaningful way. Recently when I visited her in the nursing home, she was sitting untangling a ball of lace the staff had given her. Imagine my surprise when she looked up; giving me a brilliant smile, and said “Can you help me with this? Hold this.” Handing me a piece of lace. I did as asked! She continued to be attentive and alert throughout the visit; taking an interest in the conversation I had with a carer. I then got out my phone to show her photos. Normally she would’t recognise pictures she’s seen before, but on that day, and much to my surprise, she did. When I showed her photos of the cat she said “Yes dear, you showed me those before” and to the Christmas photos her comment was “Lovely, it’s Christmas soon isn’t it.” I was floored!’ She hasn’t had any concept of time for a couple of years, or more. On leaving I have excitedly told my brother what had happened. The next evening he rang me to say that he had visited, and that she had been a complete zombie.

  6. My Dear mum passed away 9 weeks and 2 days ago. She had mild dementia,quiet surprising really considering she had suffered four strokes. She had very bad dysphagia and could not speak at all well.I would have to say looking back now that my mum was on her journey out of this world a couple of weeks before her passing .
    She would describe on occasions that my dad(dec) was at the foot of her bed. She became very clingy,even wanting me to sleep in with her.
    She became sleepier and did not like her food as much.
    There were days that I believed she was not going to be around much longer,and then she would spring back.I will never forget the day before she passed,she was on her second week in respite and even though she had stopped eating and speaking and was staring blankly, she managed to sit up in bed and acknowledge me and was so pleased to see me, waving her arm at me when I came through the sliding door. As the day went on I Knew that this precious, frail women was on her journey, her body limp like a rag-doll I carried her mere 28kg body from her armchair and to her bed, and still she fought. I lived for her and she for me,as the morning sun streamed in the room just after dawn,a tear ran down her face ,her face in my hands,she gave a big sigh and took her last breath as I told her to fly high mumma bear and that loved her. She Looked Radiant …

  7. I’d never heard of PL until today. Mom had a moment of clarity and asked if she would ever be normal again which implied she was aware that she was suffering in some way. She also commented that she wouldn’t be able to participate in an annual activity. Within about 10 minutes it was back to how many people live here, who are you,?etc.

    Now I wonder if it was just a regular moment of lucidity or a foretelling of something else?

  8. This happened with my non she’d had dementia for just about 3 years, during her last 7 weeks she had a few strokes and everything when downhill quickly. On her last Friday afternoon, she seem to become “heeled” walking on her own to therapy, feeding herself, and asking questions about family members. She hadn’t done any of this in months. That afternoon she laid down for a nap, and never woke up again. She had another stroke in her sleep and died 4 days later.

  9. 3 years ago my dad was on palliative care he had end stage vascular dementia.
    A few days before he passed he woke up was speaking to everyone he recognised everyone asking us all why we where there what we had been doing with ourselves.
    He was laughing and giggling it was surreal we had our dad back for just a little time he told us all his dead family was there waiting he never believed in anything like that it was comforting to know he wouldn’t be leaving alone.
    Miss him x

  10. Yes my dad few days before he died was so clear the conversation about life and thatits so short and grab happiness while u can

  11. My mom has dementia and it’s getting worse I think I’ve had her living with me now for 5 months I’m now her care giver it’s a hard thing to watch her go through this bad disease any advice to give me I’m learning as I go

  12. My mum had dementia for several years. I lost her mentally long before I could say goodbye. One of the most memorable moments was the day before she died when she looked into my eyes and said ‘I love you’.

  13. In July 1978 my great grandmother who had been suffering dementia with hallucinations for a number of years, suddenly had two massive nosebleeds. Following this she was lucid and back to her “old self”. This lasted for around a month until she passed away. She was 78.
    Could it have been “hardening of the arteries “ in the brain that the nosebleeds cleared? No one ever mentioned anything.

  14. Yes. 3 years ago, two days before my father (who was in Palliative Care with late stage Dementia) died he suddenly was very lucid and carried a normal conversation with me for a couple of minutes before dosing off. I didn’t know about PL at the time so I thought that his condition wasn’t as bad as I thought it was. Maybe it was the dehydration that made him totally confused. I was fooled big time.

  15. My 91 year old father was diagnosed with Alzheimer’s over a decade ago. He has had several episodes of paradoxical lucidity over the last 10 months. I would be very much interested in participating in an ongoing study.

  16. My mom is on hospice and we have taken her off all her seizure medication and blood pressure medication. She slept 9 am one day till 5 pm the next day. She wasn’t urinating drinking eating. She had been choking on liquids. I didn’t think she was going to make it throughout the night. The next day she got up ate walked to the bathroom and we talked. It’s been 3 days now and I can’t believe it. I’m afraid every morning what she will be like.

  17. My husband had been battling with advanced COPD for over 4 years. His health was clearly declining. One day he was suddenly so much more alert and ready to ride into town and get Chinese carry-out. Over the next 3 days, he ate & drank and had his best friend over to visit just like old times. He was talking and laughing and seemed to be feeling so much better. We sat on our porch in the warm late fall afternoon and talked like we hadn’t done in weeks. After the third day, he began a downward spiral and passed away 4 days later. I am truly blessed to have had those 3 days with him and will always cherish those days. They were among the best of our 40 years together. Thankfully he passed peacefully in the home we had shared for over 25 years.

  18. My mum is amazingly lucid this week. Both on Saturday when my brother visited and yesterday when I visited. She was like her old witty self. It was very unnerving as I knew that to sometimes be a sign the end is near!

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