FDA issued warnings today that some of the older anti psychotic drugs like Prolixin can cause death in elderly dementia patients. Same black box warnings on some of the newer ones. AD is a terminal illness. I feel if the drugs keep them more manageable so the caregivers can better cope there is no reason to discontinue their use. I do feel our loved ones should be evaluated periodically to see if dose adjustment down is called for. bluedaze
The warning is used to make sure that doctors and caregivers understand their options. It doesn't stop doctors from prescribing the medicine, for caregivers who feel as you do. And thank heaven for that -- I have been appalled at some of the decisions to pull a drug or halt a clinical trial (for other awful diseases) where the drug has apparently been very helpful for the majority of patients, but was nevertheless implicated in a single, possibly even unrelated, death.
Frankly the black box warnings would not stop me. You give morphine at high dosages to terminal cancer patients in pain because it just does not matter if they get addicted. For our loved ones, the choice could easily be a locked ward or the drug. The problem is that most people don't know that all dementias are terminal.
Has anyone given their spouse seroquel? We tried clonozapam for the agitation and anxiety, but it made my DH so clumsy and out of it that he fell and couldn't even walk around. I'm afraid to give him the seroquel for fear of the side affects.
Seroquel is my lifesaver. My DH gets 25mg after breakfast and 50 mg before retiring for the night. A year or so back he only got one in the evening. Then the doctor said one in the am and 2 in the pm. Never have had a problem at all. He is never a problem in any way.
I know alot of AD persons who are getting seroquel. my DH was on it a short time and unfortunately it didnt work for him. his aggitation was worse, so dr rx'd zyprexa. it zombied him out too and he slept alot but at the time i needed him calmed down regardless of the effects. his blood sugar levels rose dramatically on the zyprexa and or/seroquel he was on. i think it was zyprexa as it was the longer dose. but after we discontiued it the blood sugars returned to normal. wasnt fun pricking his fingers for prediebetic either during that time-plus watching his diet. many people have rave reviews of the seroquel though, each is differnt, your dr will know if you should try it. almost ALL of these meds we are using to help with the AD persons mental states are black boxed and have warnings. its just you hope for the best when rx'd them. there isnt whole lots to choose from with dementia. in my case i chose to take the risks associated as i didnt want to have to intern him to a facility due to combativeness and aggession. thankfully he moved into a new phase which is complacent now. hope it works for you, divvi
My hubby was on Thorazine and Tegretol for over 18 yrs. for mental illness. Extended exposure to the Tegretol created a false signal in his system, causing his tom dump electrolytes(life threatening). Meds hads to be changed. Testing to determine exact condition ID'd his vascular dementia. New meds have scary black box warnings, but as the doctors told me when looking at his combination of conditions and meds to chose from, some of our choices are between BAD and WORSE. There is no GOOD choice left. There were 5 possible choices to replace his Thorazine. Seroquel made him sleep--he'd get up in time to take another and go back to bed. Zeprexia was like giving him a glass of water--no help at all. Risperdal was absolutelly wornderful for his symptoms but caused such bad joint pain and muscler stiffness I had him to Orthopedic Drs. before I found out it ws the med, and he still is on pain relievers even though he's been off the Risperdal for ovber a year--some side effects stick. Choice nbumber 4 is Geodon and is working, with some side effects, and we have found a tight balance with his dose. There's one more we could try, but it requires frequent blood tests to monitor levels and I was cautioned it is a difficult one to keep in balance. None of these are great but are what there is to use. His Lamictal is warned against for use for seniors, but is doing the job in place of the Tegretol. On them, he is still home and functioning. Off them he would be in a locked unit and probably restrained--or by now maybe even dead. I hope to give him as long as I can at home in his normal environment, and then I really hope when it's his time, he can go quick and not linger, lost in the fog of dementia. carosi
Like you, I did not know that. Our LOs have a terminal disease. I recently had two conversations with a couple who are friends and neighbors. Separate ones with the wife and later with the husband. Unlike most of my neighbors they knew that my husband has a terminal illness. They had already been through it with both of his parents. Almost no one around you will know that your husband is terminal if and when he gets diagnosed.
I think that the answer to Val's question is not clear-cut. For example, people with vascular dementia are at a higher risk for strokes and AD. In that sense, it may be considered terminal. However, it is my understanding that the vascular dementia itself does not cause death, the way AD does. VaD patients die from heart disease, stroke, pneumonia, or other infections.
Generally speaking, the prognosis for a patient with a dementia is "poor".
Are any of our spouses completely healthy except for AD? Mine has had at least one mini stroke, has COPD, Sleep Apnea, PVD, and Restless Leg Syndrome. I remember several of you mentioning other illnesses that your spouses have, and then there is always the heart attack that could surprise us all. It is amazing that almost no one outside our group realizes that AD is a terminal illness. They think of it like it is something that you have the rest of your life, but not that it causes death. I am ashamed to admit I was ignorant of AD until three years ago. I knew the basics: the loss of memory, the change of personality, the inability to take care of oneself towards the end, but not all of the things we discuss here. If my husband needs any drug to help him maintain, I'll give it to him. So far, he doesn't. Carosi, we all hope that we can keep them at home as long as possible, and that when the time comes, that they go quickly. It is our wish for them.
My husband has heart disease (6 by passes and a pacemaker), high blood pressure, chronic high cholesterol, and type II diabetes. I'm editing this because I left out that he is as deaf as a pole and won't wear his hearing aids.
The Vascular Dementia is considered a secondary dementia caused by strokes and/or heart disease. So yes, it will be the heart disease or the stroke that actually kills him, but unlike most kinds of heart disease this one can't be fixed with surgery. That is what makes VD terminal.
A good percentage of the people with any terminal disease, including terminal cancers, die from pneumonia. It is the most common way for AD patients to die. But the underlying reason they die is not pneumonia. It is the AD or the VD or the Cancer. Pneumonia is just the immediate cause of death. There are places where they require the doctor to list BOTH the immediate cause and the underlying cause because too many terminal diseases are being under-reported.
I'm going to say it again because it needs to be said. All dementias are terminal diseases. Some AD patients will live for years, but in the end their minds and bodies will just stop working. VD patents tend to go faster because they have VD because their bodies are already shutting down. And a large portion of VD patients have AD too.
Starling, you are so right...my husband (who died at 61 and healthy as a horse except for the AD) contracted aspiration pneumonia....but on his death certificate the doctor listed only AD as the cause of death. He wouldn't have had the aspiration pneumonia if he wasn't end stage Alzheimer's.
Mary, my husband has high blood pressure, has had at least one TIA, has closed-angle glaucoma and cataracts in both eyes, is hard of hearing, has a hernia and pretty major hemorrhoids (which he objects to anyone knowing about, for some reason), and has been having a lot of trouble with skin cancer. He's had seven basal cell carcinomas requiring Mohs surgery so far ... this week, we found out he now has a squamous cell carcinoma just below one eye. I do NOT look forward to trying to keep that from becoming infected when he has the surgery ... they won't be able to use a bandage there. And he picks at stitches, since he can't remember what they are. He also had to have his gall bladder removed several years ago.
HE thinks he's in great shape, constantly insists I should let him do any heavy lifting. :-)
This is my first time joining this discussion. I read everyone's comments and either nod completely or am horrified by what is ahead. I am interested in results of using the meds. My husband couldn't tolerate Namenda or Aricept, and is now on Exelon, but just this morning took off the patch and refuses to wear it. He says he can feel himself going under with the meds. Unfortunately, his Doc is on vacation for a week...wouldn't you know! I feel that he has failed considerably since trying all these meds, but he takes so many others for his heart problem (had a Cardioverter Defibrillator) that it is hard to really know. I'm still a novice at all of this even though Garv has been failing for at least 3-4 years. Are any of yours impossible to deal with..my patience is long gone .
kathi37, what was your husband's diagnosis? Many doctors don't feel that a thorough work-up is needed, and just start the patient on AD meds without making sure the dementia really is due to AD. However, AD meds may actually be contraindicated for some of the disorders that cause dementia. For example, aricept and exelon cannot be used with FrontoTemporal Dementia -- they can actually make the symptoms much worse. (Also, antipsychotics cannot be used to treat behaviors if the patient has Lewy Body Dementia.)
If the doctor is confident that your husband has AD, and especially if you thought the exelon might be doing some good ... the "synthetic" cholinesterase inhibitors (aricept, exelon, razadyne, etc) commonly cause symptoms that are so unpleasant, the patient won't use them. There is a "natural" cholinesterase inhibitor that is sold in the U.S. over-the-counter as an herbal supplement for "improving memory", called huperzine A, that you might want to consider trying instead. It is widely used in China to treat AD, and is reported to be much better tolerated and much more effective than the synthetics. It is now in clinical trials in the U.S., to confirm the Chinese reports and establish safety and efficacy in accordance with U.S. requirements. My husband had a little nausea at first, but only when I gave him his meds before meals. Since I switched to giving them after meals, he's been just fine. His test scores have been pretty stable for a year and a half. (Be sure to look for a preparation that doesn't contain anything besides huperzine A ... many companies add a bunch of other supplements to it, vitamins and such, making it hard to know exactly what you're giving your LO.)
If you do decide to try a different med, I would also suggest telling your husband it's a new vitamin, or something else equally innocuous, so he doesn't associate it with his AD.
many thanks for your imput. He has had a full (to MY knowledge) neurological workup with all the xrays etc. to go with it. I don't know the exact definition of the type, but will very defintely ask on our next visit. Trying to slip a new drug to him as a vitamin would never work at this point. He is the eagle eye on everything he is given, but I will look for the huperzine A stuff. What amazes me is he has never had a negative reaction to any medication until now! Heck, if I can't find the stuff here, my daughter is headed to Beijing to set up a Nike town type facility for the Olympics..give her somethng to do on her down time.
kathi37, huperzine A is readily available in the U.S. One of the brands that the clinical trial people suggested is Source Naturals huperzine A. It can be purchased over the internet at vitacost.com. (I haven't looked elsewhere. Vitacost.com charges $10 for 120 pills containing 200 micrograms each. That's a two-month supply.)
Talk to your husband's doctor (presumably when your husband can't hear!) about the dosage regimen. Like the other cholinesterase inhibitors, a patient should be started on a lower dose and gradually build up. The maintenance dose that the clinical trial people are currently recommending is 200 mcg twice a day. I was told that if my husband starts to get worse, I could bring that up to 400 mcg twice a day.
I don't know anything about the medication, but I have dealt with vitacost.com and they are good people. I don't have a lot of requirements in my online vendors, but they fill all of them. They send things when they say they are going to send things. They send you an email about shipping. You can get their frequent emails if you want them, and if you don't want them, their unsubscribe works. They charge what they say they will charge when they ship.
Thanks for the info, Starling. We still have some pills left over from the clinical trial, so I haven't had to order any yet. Nice to know this is a reliable source.
I did some searching on the Huperzine A and it is contra indicated for my husband as he has his implant due to irregular heartbeats..I am still going to ask his Doc about it as it sounds as though it would be worthwhile trying. At this time, he is very willing to try something OTHER than the meds that have been prescribed. He did put his Exelon patch on today after having it off for a couple of days. Common sense doesn't seem to enter into this picture. The patch also has a warning about irregular heartbeats, but it doesn't seem as insistant as the OTC med...maybe to do with the trial situation.