Re: LBD Meds

[Guest guest]

I posted this earlier, but I think it bears repeating. There is an excellent

book for caregivers for LBD that goes into all these topics. There are chapters

that deal specifically with medications that should be avoided, etc. It's

available through amazon in both hard copy and in kindle. If you don't own a

kindle, you can download a free app to read kindle books on your pc or smart

phone. You can find the book at the following link

http://www.amazon.com/Caregivers-Guide-Lewy-Body-Dementia/dp/193260393X/ref=sr_1\

_1?ie=UTF8 & qid=1314045874 & sr=8-1

I just read it and found it very helpful

[Guest guest]

Hi. Congratulations on being so careful in monitoring your mom's meds. Not

every child does that. As far as the trazodone goes, it is a very short acting

med that is now usually given to aid in sleep and to calm anxieties that may

interfere with sleep. Because of its short acting nature it probably isn't

making her tired during the day. The dose of seroquel, though, may be

contributing to her tiredness. However, just because she isn't actively having

hallucinations now, doesn't mean she won't have them again if taken of the

seroquel. The seroquel is designed to manage issues like hallucinations.

My husband took both seroquel and trazodone. In fact trazodone was our go to

med for sleeping. When they tried to take him off it, his sleeping

deteriorated. If you do get the doc to try decreasing or eliminating a med, I

would suggest that you start by decreasing (not eliminating) the AM dose of her

seroquel for a couple of weeks. Then move on from there.

By the way, disruption of sleep wake cycles are common in LBD. One of the

hallmarks is excessive sleepiness during the day and poor sleep at night. It is

like they are going back to that time in very early childhood when they were up

a couple of hours and then napped and then up for awhile and then napping around

the clock. It's a very tough time for caretakers.

Good luck with any changes you might make. Keep good records so you will have a

good idea of what works and what does not work.

Smiles, Nan

>

> Hi all!

> I have not visited this group for quite some time as I've been without

internet access and lost my Yahoo password.

>

> Since my last visit I have been kept very busy taking care of my mom's affairs

and have been having my own health issues with Meniere's disease.

>

> My mom was diagnosed in 2008 with moderate stage Lewy body dementia although I

had seen changes in her at least 7-8 years earlier. She had an excellent

gerontologist who was well-trained in this disease and actually also taught at a

well known medical school here in Nova Scotia, Canada. Unfortunately, she was

over-worked and was not given the help she had asked for from hospital

management and was forced to move her practice to another province the following

year.

>

> At this time my mom was placed on a 5 mg dose of Aricept once daily and dosed

slowly up to 125 mg of Seroquel two 25mg doses in the morning and three 25mg

doses at night to deal with troublesome hallucinations. There was no further

follow-up except from her family doctor who had little knowledge of the disease.

>

> She was placed in a nursing home in December of 2010, a choice she had asked

for if ever she were to become incapacitated to the point where she could no

longer look after herself.

>

> She is now being seen by a general practitioner who visits the nursing home to

see her. He has taken her off the Aricept (in Nova Scotia a patient must pass

certain cognitive tests before medicare will pay for it) saying it was no longer

doing her any good. I was not consulted and because my mom was getting up

through the night and walking around he also ordered a 50 mg dose of Trazadone

for her.

>

> Now my observation when I go to visit her is that she may be asleep at the

lunch table or on another resident's bed early in the day. My feeling is that

she is being over-medicated with these two drugs and seems tired most of the

time.

>

> I am going to have a consultation with this doctor hopefully this week (he has

been on vacation the two times I called him this month). I would like for him to

dose her off the Seroquel as she is no longer having hallucinations but I think

she should have been kept on the Aricept as I find her memory seems far worse

now than when she was taking it. Also Seroquel is not approved by the FDA in

Canada for dementia in the elderly and has possible dangerous side effects.

>

> Anybody here who could enlighten me on the subject would be a great help to

me.

>

[Guest guest]

Thanks so much Nan for your help and taking the time to share your experience.It

will help me in speaking with the doctor about adjusting her meds.Even with the

Trazadone, my mom is usually up roaming the hallways shortly after being put to

bed.I was thinking perhaps because she sleeps so much during the day that her

sleep cycle is disrupted but as you pointed out that is common with Lewy body.

My concern with the Seroquel is not only its sedating effects but also the

gerontologist had asked me because of its side effects(possibly Parkinson's

symptoms)if I thought her hallucinations to be frightening enough to warrant its

use.At that time she was living at home with my brother who himself is depressed

and all she saw all day was television flicked from one channel to another. She

fixated on the TV characters as being real and living in the house. Now she

watches very little TV in the nursing home and seems to be contented with the

care she is being given.

Since she was taken off the Aricept I see a real decline in her recognition of

people and her short-term memory but realize her cognitive abilities are now

very limited and this may also be a progression in the disease. I find it so

heart-breaking to see a woman who was once so smart and active now unable to do

even the simplest of tasks. However, all we can do is take a day at a time and I

am consoled by the fact that she is getting good quality care.

Thanks again for responding,

{{HUGS}}

Peggy