Seroquel

aquiroz1912

I’m new to the community. My dad has dementia these past 5 years on namenda and donezepil. Lately he has started so sundown and will start having these episodes of looking for his wallet and blaming my mom (main caregiver) she’s stealing his money. Our doctor said to try seroquel but I’m scared as when I’m reading about it, states it is not meant for people with dementia. Why did the neurologist recommend that then? He wouldn’t even prescribe me trazadone told me to go to his pcp for that

towhee

Welcome to the forum, although sorry you are in this situation.

I do not know why the neurologist would not prescribe trazadone, it might be that he thought the PCP would be more familiar with that medication. As to the seroquel, no matter what is on the prescribing information about not being for dementia, it is commonly prescribed. Usually for behaviors a doctor will start with an antidepressant and if that does not work they will move on to an anti-anxiety med or an anti-psychotic like seroquel. Which one they will try first depends on the doctor and on the symptoms. For hallucinations they will usually start with seroquel. They all have side effects, it is just if the benefit is worth the risk. You try to only start or stop one medication at the time, start with the lowest possible dose and only increase as necessary, and monitor side effects. You also try to moderate the behavior by responding differently. Look at some of the youtube videos by "Dementia Careblazers"

https://www.youtube.com/watch?v=UKAvzx9vhtc

harshedbuzz

@aquiroz1912

Hi and welcome. I am sorry for your reason for your reason to be here but pleased you found this place.

Aside from the Seroquel question, I was struck by the tags you used for your post. Given your description, your dad seems further progressed than "Early Stage". The anger and agitation are often a symptom of stage 4 ("Middle") of the 7-stage model and the moving room to room/wandering more often starts in stage 5 ("Late"). Dementia is a progressive disease and it's likely dad has progressed since his initial diagnosis 5 years ago.

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

The approach @towhee shared is useful. My dad accused mom and I of all manner of maleficence— infidelity for her and theft/stupidity for me. Folks here suggested I validate his feelings and apologize for stealing. This felt all kinds of wrong, but it worked. TBH, I don't think he was able to process the exchange, so he dropped it. Later, I was able to just redirect as his memory worsened.

Seroquel is commonly prescribed "off label" for many of the emotional and behavioral issues in dementia as well as for hallucinations. For PWD, it is normally prescribed at much lower doses than are used for bi-polar disease and schizophrenia. It can effectively address the depression and anxiety some PWD experience and display as irritability, agitation, anger and aggression. It is best used as a daily medication, you may see sleepiness the first week but that passes. Overall, sleep generally improves with Seroquel both in terms of quantity and less fragmentation. It will take about a month to see the full response to the medication and adjustments may be needed to get the proper dose/schedule and again as his brain changes with progression of the disease.

Yes. There is a scary Black Box Warning on this medication and others in its class. As an advocate, you have to weigh the benefit of your dad being relieved of emotions he doesn't have the bandwidth to process and the risks to your mom from attempting to care for so challenging a PWD. In my family, Seroquel allowed dad to remain safely at home with mom until a few months before he died which benefited both of them. Had we not landed on a medication to relieve his agitation, he would have had to be placed sooner for mom's protection and also because he was refusing to cooperate with care including eating, hygiene and medication. In his unmedicated state, he would not be welcomed at most of the nicer MCFs in my area. When we did eventually place him, mom's first choice did not offer him a room because of "a potential for behaviors". At the end of the day, the quality of life/safety issue for both PWD and caregiver was worth the risk of stroke in a man who was already dying from dementia.

There is a newer medication, Rexulti, from the same class as Seroquel which does carry an indication for agitation in Alzheimer's Disease. This medication is not available in generic form and is expensive— about $1500/30-day. There's a Patient Program to get it for as little as $5 a month but only for people with commercial insurance— not Medicare, Medicaid or Tricare. Rexulti carries the exact same Black Box Warning as Seroquel and the other atypical antipsychotics.

If you are having trouble getting your dad's medication managed, I would suggest finding a geriatric psychiatrist to add to your team. They are the specialists with managing psychoactive medications for PWD. IME, they are more helpful than neurologists once you've had a comprehensive evaluation.

HB

M1

what HB says is exactly right. Rexulti carries the fDA indication because they bothered to do the placebo-controlled studies, but it does carry the same risk and has NOT been shown to be more effective than the older, cheaper drugs in the same class like Seroquel and Risperdal. My partner had been on Seroquel for over two years with no loss of efficacy and no side effects.