From the Alzheimer's Association: "On June 20, 2012, participants across the Northern Hemisphere will take a stand to show those facing Alzheimer's disease that they are not alone. Alzheimer's disease is a growing epidemic and is now the nation's sixth leading cause of death. It is the only one in the top 10 without a way to prevent, cure or even slow its progression. The Association is encouraging participation in The Longest Day to honor and remember those who have been touched by this disease."
If we cannot slow the progression, why are we giving all these medications? DH is on Namenda and galantamine (Razadyne), as well as Seroquel. I can see a difference in his behavior when he takes Seroquel, but what about the other two? I was told it could slow the progression, but there is no way to judge that, is there? He is steadily getting worse, and realizes he has problems. That is the sad part, when he apologizes.
The common falderal is, of course, that while AD meds do not halt the progression, they may--for a time--enable the person to function at a higher level than he would otherwise. I think it is typical to not give them up until you've passed the point where function is not worth maintaining. When Jeff hit his steep slide this year, and meds required adjusting, the AD drugs were discontinued because it was clear they weren't helping to hold any lines.
Medications also make it possible for many people to be cared for at home. Aggression, constant motion, repetition and other symptoms are hard on both the person with dementia and the caregiver.
JudyTBT the my DH has been on Aricept & Namenda for over 6 years. The main reason I keep him on the Namenda is, when I tried twice to take him off his aggression returned & when I mentioned that here, I was informed that in some cases Namenda helps with aggression. I keep him on the Aricept because it went generic & it's cheap & like you said, who knows if it helps (but who knows if it doesn't). Plus he has never had any side affects from either medication.
As I understand from what I have read, the AD drugs were approved for slowing down the progression, but were only tested for 2 or 3 years. So the doctors and other professionals do not know what they do long term...maybe they are helping some and not helping others..but, bottom line, they all end up the same.
They have never to my knowledge been said to slow the progression. The drugs allow them to stay cognitively better longer while the disease still destroys in the background. That is why when they come off, if the drugs were helping them cognitively they will quickly progress cognitively to where they would have been if not on the drug.
I hate whenever the news says it slows the progression.
Thank you Charlotte.....I knew that too...remember reading it a number of years ago and yet I still fall in to that trap and say the same old, same old..."slows the progression"....No...it is still going down hill just hiding from all of us for awhile. I think they are starting to not work for my dh.
I have no faith anymore on any of the meds...nothing is helping to slow or even with confusion, DH is on .25 of respiradome in the evening, but during the day he's still all confused more than ever since he came home from hospital with a UTI. Most times I don't have a clue what he's talking about, we were in France last night, said we had to find a way to get home and ring Julia (me) up to let me know we are going to see the kids...
Charlotte, I have closed my facebook, just don't have time for it, never really did much on it or liked it. It was lovely to see some faces to the names I got to know here.
I thought this article was pretty clueless: http://www.dailymail.co.uk/news/article-2160003/Care-home-nurses-taught-play-board-games-dementia-patients-stop-prescribed-chemical-cosh.html But I think the doctors are clueless too.
I experiment. Lloyd started out on Aricept in 2009. Then Namenda was added and increased to 10 mg. Then he took Trazadone to sleep. Then he had his first major seizure in April 2010 and was in the ICU. They stopped the Aricept, saying it could bring on seizures. They added Depakote sprinkles (500mg) at bedtime and it made him like a zombie so I stopped that. They put him on Keppra and he turned into a drooling zombie so I stopped that. Then the doctor wanted him back on Aricept and I had to remind him that he had previously told me it could cause seizures. Then he insisted on Dilantin. I gave it to him under protest and he was allergic to that. Broke out in a rash all over his body! I took him off the Trazadone when he had serious jerking and falling in the mornings. Those issues improved. Our PCP wrote scrips for liquid Neurontin and Marinol. I paid cash for the Marinol ($250 per mo.) for over 6 mos. I took him off that last week, but if his headaches start again; I will have to get some more. The half tsp of Neurontin has been amazing! Sleeps well once he goes to sleep. Seems to reduce any general pain. Severe myoclonus in the AM gone for the most part. In March, I was told the Namenda wasn't doing anything for him. I tried to take him off, but he became aggressive (more than I could tolerate). He now takes one about noon. It is just a crapshoot. He now takes 4mg coumadin, 10mg Namenda and 3/4 tsp. Neurontin daily. I am a firm believer in "less is better". I feel he is impaired as it is...why should I impair him further? Just saying...
Sounds like me, Linda. Took him off Aricept and Namenda almost two years ago, after being on them for almost 7. Dr. put him on an anti-depressant - can't remember which one now, but he had all the side effects; took him off and gave him Generic Zoloft - Sertraline. It has worked well. Put him on Keppra a couple weeks ago for absence seizures - he was a zombie - so I weaned him off it. Still having the seizures, but I don't want him sitting and staring or sleeping all day. He is still sleeping well at night - usually 12-13 hours, which is good for me! Has A-fib, but we aren't treating it with blood thinners, only a regular aspirin. At least his PCP and I are on the same page. He usually agrees with me! LOL
Vickie, our PCP generally gives me whatever I want after consulting his PDR. The neuro is another story. I would love for Lloyd to sleep 12-13 hours, maybe down the road. It took me a long time to muster up the courage to experiment. Wish I had done it sooner. After that major seizure in 2010, I started. I couldn't believe what some of the medicine did to him. It had never occurred to me that the medicines could make him worse. Lesson learned!!
That is an excellent point. My husband was on aricept for about two years. It was the first med discontinued when he was hospitalized in April. Although the chart notes said "clearly it is not effective for him", the decline afterward was so very fast. It makes me wonder about, well everything.
Vickie,
I am sorry the keppra did not work out so well...
Regarding meds in general, I currently think, how can we know? My husband had bad reactions to aricept at 23mg but seemed to benefit, or so I thought, with it at 10mg. He also had a bad reaction to depakote yet it remained a suggested med "for future consideration".
Emily is right, the psychiatrist at Steve's ALF is keeping him on Namenda even though he's late stage 6 (has been on it for about 7 years now). He said it does seem to help with aggression. Of course, Steve is on multiple psych meds, all with the intention of calming him down, so who knows if the Namenda is making a difference? But there seems to be no negative side effects, so it's ok with me.