Delirium

A primer for newbies and old pros alike.
NF52
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Re: Constant Delirium not caused by UTI

Post by NF52 »

PhilD wrote: Sat Feb 18, 2023 5:31 am Robin is getting delirious day after day. She has been in hospital to be tested for the cause of it and her biochemistry is normal . She also does not have UTI. So my question is . Is it normal for people with Alzheimer to finish up with being delirium constantly ? If not , what can I do to stop it ??
Philippe,

I'm so sorry to hear that Robin is again struggling with delusions and agitation on a daily basis. My non-expert understanding, from listening to a few talks on this, is that sometimes the brain in later Alzheimer's loses the connections needed to understand or process all the info from our five senses and the experience of that causes confusion, agitation and sometimes delusions. [Lots of people, me included, have tinnitus or ringing in the ears, after a high frequency hearing loss, Our brains also are trying to make sense of the missing sounds by producing sounds that can't be heard by anyone else.]

Here's some background from an upcoming 4-year double-blind trial using 12 weeks of CBD and THC (or placebo) for agitation in the LIBBY Study in the US. It is starting this year, using very carefully sourced and regulated THC and CBD oils (orally) for treatment of what they term "agitation", but which includes delusions and delirium, in late stage dementia.
Approximately fifty percent of people diagnosed with Alzheimer’s disease (AD) or other types of dementia will receive hospice care at the end of their life. Of these, over seventy percent will be prescribed psychiatric medications for management of agitation. There are no approved treatments or guidelines to assist clinicians in addressing end of life agitation in dementia. In the absence of appropriate evidence-based guidelines, patients are typically prescribed a combination of anti-psychotics, sedatives, and opiates. These medications often lead to undesirable side effects including confusion, constipation, itching, tremors, and muscle contractions, all of which tend to make the situation even worse, lowering quality of life for patients, and adding burden to their care partners.
Recent research suggests that derivatives of cannabis (some of the chemicals found in marijuana) can be beneficial in controlling agitation and distress without the side effects of medications commonly used to treat agitation.
The people in this study are going to be in "hospice", at home or in a long-term care facility, which in the U.S. that can be longer than 6 months for people with dementia. The families of these patients will be the ones to provide "informed consent" and will be closely involved.

IMPORTANT NOTE: This is not something you want to try at home with locally-sourced CBD oil or marijuana, since the components of those may vary widely and cause serious side effects.

Here's a more detailed description from the U.S. National Institutes of Health grant award. I think some doctors have been using these drugs already in "off-label" treatment to see if they help.
This project will be conducted [through] the Alzheimer's Clinical Trials Consortium (ACTC), ...supported by the National Institute on Aging (NIA)... The aim of this project is to test the efficacy of an oral combination of two cannabinoids, tetrahydrocannabinol (THC) and cannabidiol (CBD), for the treatment of agitation ...In the current proposal, we have chosen to use a combination of THC and CBD oils because of the enhanced synergistic effects that the combination can provide while maintaining a low side effects profile... A total daily dose of 8 mg of THC and 400 mg of CBD dissolved in digestible oil will be administered 2 times per day with a maximum of 4 mg of THC and 200 mg of CBD per dose. The study will recruit 150 HAAD subjects from 15 USA sites over a 2-year period. To facilitate recruitment and retention and to monitor long-term safety of the THC/CBD combination, completers of the double-blind study, will then have the option to participate in a 6-month, open-label extension study.
https://grantome.com/grant/NIH/R01-AG068324-01

Your doctor may know if there's a similar trial in Australia. May you and she both find some respite from this delirium.

Nancy
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Re: Constant Delirium not caused by UTI

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PhilD wrote: Sat Feb 18, 2023 5:31 am Robin is getting delirious day after day. She has been in hospital to be tested for the cause of it and her biochemistry is normal . She also does not have UTI. So my question is . Is it normal for people with Alzheimer to finish up with being delirium constantly ? If not , what can I do to stop it ??
No answers but these links might be useful.
https://www.alzheimers.org.uk/get-suppo ... g/delirium
https://www.mayoclinic.org/diseases-con ... c-20371386
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Sleep

Post by PhilD »

With Delirium and UTI under control . I now have the problem that one my wife gets up in the middle of the night to go to the toilet she won't go back to sleep. She will walk around the house and keeps hiding and moving objects.Now she sleeps during the day, I give her 5 mg of melatonin one hour before bed time ( 10 pm). She gets up around midnight and that's it.
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Re: Sleep

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PhilD wrote: Wed May 03, 2023 7:25 pm With Delirium and UTI under control . I now have the problem that one my wife gets up in the middle of the night to go to the toilet she won't go back to sleep. She will walk around the house and keeps hiding and moving objects.Now she sleeps during the day, I give her 5 mg of melatonin one hour before bed time ( 10 pm). She gets up around midnight and that's it.
Hello Philippe,

You must be exhausted, and Robin must be very confused as she walks around "putting things away", which is how I imagine she would describe her actions if she could. My mother-in-law went through a phase in which she also put things away during the day, and then wondered why her jewelry was in her adult daughter's old bedroom, or who had hidden her slippers. It was a difficult time, and must be much more so with so little sleep during the night. My own mother spent quite a bit of time wakeful in her last few months in memory care, often having very diluted coffee (her favorite drink) and chatting with the wonderful staff before again being able to go back to sleep. It was a huge help to have people whose role was to be awake and genuinely caring with her, even if most people were asleep during those hours.

From the little I've read, the brain's circadian rhythms can switch off in the later stages of Alzeimer's. Below is a brief excerpt that might be of interest to you, about a drug called suvorexant (trade name Belsomra®). Suvorexant was approved in the U.S. by the FDA in 2020 for use in people with Alzheimer's-related insomnia. This is from a "case series study" of four elderly people with Alzheimer's and nocturnal delirium, which sounds like what Robin may be experiencing:
Here we report four cases in which suvorexant was administered to adjust the sleep-wake cycle in elderly patients with Alzheimer’s disease (AD) who developed nocturnal delirium...In the present report, suvorexant was administered for the purpose of normalizing sleep-wake cycle disturbances observed in patients with delirium. All four patients with nocturnal delirium successfully fell asleep rapidly after administration of suvorexant, suggesting that the resolution of delirium may be related to the effects of suvorexant on sleep dysregulation
According to the article, the effective dose for these individuals was 15 mg, (half the dose recommended for people over 65 with just insomnia.)
Effect of Suvorexant on Nocturnal Delirium in Elderly Patients with Alzheimer’s Disease: A Case-series Study

Here's an excerpt from a peer-reviewed article by a clinical associate professor of pharmacy, explaining how the drug works--and why 70,000 neurons that aren't able to work without some help may be keeping Robin awake:
Suvorexant (MK-4305, Merck), an orexin receptor antagonist (ORA), is the first in a new class of drugs in development for the treatment of insomnia. The tablets promote the natural transition from wakefulness to sleep by inhibiting the wakefulness-promoting orexin neurons of the arousal system... Suvorexant...promotes sleep through the binding inhibition of orexin A and B, neuropeptides that promote wakefulness. Roughly 70,000 orexin neurons are in the human brain, located in the perifornical lateral hypothalamus, which send signals throughout the brain and spinal cor Suvorexant improves sleep onset and sleep maintenance. This unique alternative has a favorable tolerability and limited side-effect profile...The safety profile of suvorexant was favorable in adults younger than 65 years of age (up to 40 mg) and in patients 65 years of age and older (up to 30 mg).
Suvorexant, a Dual Orexin Receptor Antagonist for the Management of Insomnia

Finally, we've just had a new topic on suvorexant that suggests it may help with reducing tau also:
Re: "Suvorexant Acutely Decreases Tau Phosphorylation and Aβ in the Human CNS"

I hope for some solutions for both you and Robin.

Nancy
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Re: Delirium

Post by SusanJ »

PhilD wrote:I now have the problem that one my wife gets up in the middle of the night to go to the toilet she won't go back to sleep.
And there is potential for Suvorexant to have other positive effects. Here's a link to another thread with the details, and note it's very early in the research cycle.


(Edit, NF52, great minds think alike. ;) )
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Re: Delirium

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SusanJ wrote: Thu May 04, 2023 8:16 am And there is potential for Suvorexant to have other positive effects. Here's a link to another thread with the details, and note it's very early in the research cycle.


(Edit, NF52, great minds think alike. ;) )
Thanks for your post--I look forward to more studies of prevention and treatment using suvorextant, which appears to be both safe and effective.
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Re: Delirium

Post by PhilD »

Thank you both for you prompt response. Not sure suvorexant ( belsomra) is available in Australia but I will try if I can get some and let you know how it goes. Fingers crossed
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Re: Delirium

Post by PhilD »

I tried Belsomra ( 20 mg) for a week now and it is not having the desire effect. Robin still wakes up around 2 am in the morning and just wonders around until 7 am . I have also tried 6 mg of chemically prepared Melatonin and it too does not work. What time of the day am I supposed to give Robin the Belsomra ?? I give around 7 pm and she goes to bed tired around 10:30 pm. Any other suggestions please. Thank you in advance.
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Re: Delirium

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PhilD wrote: Sun May 21, 2023 11:36 pm I tried Belsomra ( 20 mg) for a week now and it is not having the desire effect. Robin still wakes up around 2 am in the morning and just wonders around until 7 am ... What time of the day am I supposed to give Robin the Belsomra ?? I give around 7 pm and she goes to bed tired around 10:30 pm. Any other suggestions please. Thank you in advance.
Hi Phil,

I'm sorry that the results from Belsomra haven't been what you hoped. Robin's neurologist may have suggestions on timing, but I did find this on timing in the original article:
Effect of Suvorexant on Nocturnal Delirium in Elderly Patients with Alzheimer’s Disease: A Case-series Study
[Case 1: 82 year old male with severe Alzheimer's]15 mg suvorexant at bed time was administered. He fell asleep within 30 minutes and slept for 5 to 7 hours from that night on. [Case 2: 91 year old with moderate dementia] She was diagnosed with nocturnal delirium...15 mg suvorexant at bed time was administered. She fell asleep within 30 minutes and slept for at least 6 hours from that night on.
The four other case studies also suggest it was given right at "bedtime". If Robin's typical bedtime is 10:30 or 11:00 PM, maybe giving it close to that time would increase the effect .
It also appears from the case study article that they ended all other sleeping medications and supplements before using suvorexant.

Finally, they also note that the effect might be specific to dementia caused by Alzheimers, and not other diseases (Lewy Body Dementia, vascular dementia, frontal-temporal dementia).
Interestingly, when we administered suvorexant for the purpose of managing nocturnal delirium in several elderly patients with dementias other than AD, suvorexant had no effects at all.
Hope you soon find some relief for both of you.

Nancy
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