Update on the Lundbeck study....
Results are posted here:
http://lbda.org/forum/viewtopic.php?p=11546

There's also a Russian study of Namenda with recently-reported results. See:
http://lbda.org/forum/viewtopic.php?t=1673

Dear Robin, thanks a lot for this! I have just received an email from Lundbeck, which I copy below. It would seem that the study you have found information on is a different, smaller one? Itseems to coincide with the King's College Hospital one which is also mentioned on clinicaltrials.gov. Anyway, it is interesting to read these results, and let's keep an eye on the EFNS (European Federation of Neurological Societies) conference in Florence.
I will see my mum this weekend so I will be able to report on any improvements (last time I saw her was in the first week of memantine).
Thanks again!
Sofia

--------------------------------------------------------------------------------
From: Johan Ivarsson Blechert [mailto:JOER@Lundbeck.com]
Sent: 16 June 2009 15:14
To: De Cristofaro, Sofia
Subject: FW: Information on clinical trial NCT00855686



Dear Mrs De Cristofaro

I am sorry for a late reply.

Thank you for your interest. It is encouraging to see that there is a public interest in our research.

The PDD/DLB study comparing memantine vs. placebo that you refer to, will go public with it´s results at the EFNS congress in Florence during 12-15 September 2009. Further publication plans are still under consideration, therefore I can not give you any details about this at the moment.

Kind regards

Johan Ivarsson Blechert

Clinical Operations Manager
ICR Scandinavia


Tel +46 42 25 43 54 (direct)
Mob +46 703 354 354
H. Lundbeck AB
Box 23
SE-250 53 Helsingborg
Visiting Address: Rundgången 30B
Sweden
Tel +46 42 25 43 00
Fax +46 42 20 17 19
www.lundbeck.com

Just got word from my dad's ALF tonight that his psychiatrist wants to put him on Aricept and Namenda. Says "he has declined so much since he last saw him". Kinda makes me wonder when he last saw him.... Anyway, 3 doctors between last summer and early fall said my dad was in too advanced a stage of dementia to have these meds do any good. He is worse than he was a few months ago, but not THAT much worse cognitively unless he has changed significantly in the 3 weeks since I've seen him.

Does anyone out there know about the effectiveness of these drugs if started at a later stage of LBD/PD? Thanks for any advice. Lynn

I don't think there are any efficacy studies on Aricept/Namenda in DLB. You can look through the Research section of the Forum to see what might be posted there.

As Exelon is the only FDA-approved med for PDD, my assumption is that it's the only way to have been studied.

A local neurologist, who I have high respect for in terms of treatment of PDD and DLB, says that as far as she's concerned an AChEI, such as Exelon or Aricept, should only be stopped upon death.

Mr B. started with Exelon Patch and Namenda 20 months before he passed away. I treasure the lucid moments he had with me during those scary times.

Dorthea

I am in total agreement with the use of AchEl that they never should be stopped for a few reasons, as my husband's doctor explained to me when I commented that I didn't think the Exelon was working anymore, he said we really won't know that until it is stopped and if you try to restartt them they often don't have the same effect and another reason I would like to note is many people have such stomach issues when they are started until they get used to them and if you stop and restart you would probably go through those same issues, to me it is not worth it and for a doctor to say the person is too advanced, I am sorry doesn't work for me! I would want to take a chance on anything if it would enhances one's life in a diseasee such as this!

Just found out today that my dad is on Namenda. Someone must have started him on that about the same time as the Aricept. He had 3 good days since I've been here this week, and today he wasn't too good most of the day. But there is definitely a lot of positive stuff happening with his cognition since these 2 meds were started in Feb. His hearing can be extremely sensitive now sometimes (he has been about as deaf as a rock for the past year.) Tonight he had a caregiver call me and he could barely hear me even though I was having to scream into the phone.
Maybe tomorrow he'll have a good day again.... Lynn

Here's my latest question I've been thinking/obsessing about. Should we keep my dad on the Aricept and Namenda? He has more lucid moments thought-wise and speech-wise, than he was having, but his aggitation level has increased. He is now very aware, much of the time, of how bad off he is, which makes him more depressed and more aggitated. So, would it be better for him to be less congnizant and more peaceful? Have any of you noticed your LOs aggitation level increase because of their clearer thinking? He can no longer perform any ADLs except sometimes hold one of the children's cups I got him for drinking out of.
He is already on a ton of meds including anti depressants and anti anxiety meds. Thanks, Lynn

Lynn, this is a timely question from my recent experience. My 87-year old LO is a retired nurse and is aware of her dementia and what happens as it progresses. She is extremely sensitive to meds so we go really low and slow. About two months ago we put her on a low dose of exelon and observed increased cognition in about a month. She was able to find the toilet and do more ADLs. The hallucinations, delusions and depression over her condition continued, however, especially in the evening.

We increased the dose to two 1.5 mg pills rather than one. The hallucinations got a lot better. The delusions were still there but not as fierce. She became calmer and was more likely to be in a good mood when I arrived. Her cognition and behavior improved so that at times it seemed like she was her old self.

Two weeks ago we increased the excelon another 1.5 mg. The delusions became worse and more frequent. The depression and despair came back, leading to temper tantrums. She wanted to talk about her dementia and get ahold of reading material that would describe her condition. In short, her cognition improved a little but her quality of life plummeted.

I removed the extra 1.5 mg to bring her back to the sweet spot where she seemed happiest. It's been a couple of days and I have observed that her cognition is worse but she is remarkably calm, appreciative, and better socialized. We'll see how it goes, but I am purposely trading off the cognition for the emotional balance. I can't say she is happy but it is something closer to happiness. Hope this helps.

Thanks for sharing your recent experience, Annie. I know you've really been on a roller coaster with your mom these last few months, and hope things stay calmer. I'm glad you used the phrase "temper tantrums" because that is exactly how my dad acts all too often, especially now with the increased congnition from time to time.
At the dementia support group today I brought up this topic and one person responded that if she were I, she'd "do what it takes to get him back to being happy again." I almost laughed out loud when she said "happy" because my dad has definitely not seemed happy at all in about a year! I told her I'd settle for reduction in the frequency and severity of temper tantrums.
Since he can perform no ADLs and cannot even move his own body parts except his right arm a little bit, several people asked why he was on any of the 13 meds he is on. Good question, and one of the reasons I'm meeting with his primary care in 2 weeks.

Does anyone know if Aricept or Namenda are life-prolonging? Yesterday a nurse whose parent is in late stage dementia said she did not have her LO take either because they are thought to be life prolonging. Haven 't been able to find any info. about that aspect. Thanks, Lynn

Since they don't affect the underlying dementia process, I don't see how they could be life-prolonging.

My husband (75) was started on Namenda about ten days ago. After 3 days, he began to complain about feeling as though he had stroke. He was numb on one side. He was also far more paranoid and concerned about his imaginary people. His confusion increased during the week and he asked if I had any sisters. He and I have been on two major trips with my sister this year. His night-time hallucinations also increased. We have decided Namenda was not helping him in any way.

For those of you whose LO have taken Namenda and/or Aricept and found it improved cognitive functioning, how long were those effects noticed? My dad's primary care told me today that the increased cognition he has now sometimes will diminish and end within "months". He's been on those meds for about 3.5 months. Just wondering what the experience of others has been. Thanks, Lynn

Lynn, Frank has been on Namenda since Aug of last year and Aricept since this past February. I just can't tell what is normal or not. I think he's been pretty much the same during those months. The last couple weeks we've had vacation, I needed to work for a week, wake and funeral for a close friend and a wedding, so he's been out of his element and very confused. Who knows where he'd be without those meds. Hope your dad continues to do well, one day at a time.
Take Care,