This is the second article I am putting up for discussion. I would love to hear your opinion. What do you think?
The direct link is under the Breaking News section on my home page - www.thealzheimerspouse.com or you can copy and paste -http://news.bbc.co.uk/2/hi/health/8356423.stm
Thanks to one of our members for bringing this to my attention.
This one scares me to death. Unless the ones doing the evaluating walk in our shoes I don't see how reasonable decisions about cutting the use of these meds can be made. The proposal appears to be to change over to counseling to handle the agitated agressive behaviors and use the meds for only limited time spans. 3 months is suggested. They do reccommend specialized training for personnel, which is good, and they do acknowledge that there are /will be instances where the meds are needed. However, bottom line, there is no counseling/reasoning with a demented mind. And if my DH's antipsychotics were to be taken away, one of would end in jail and the other in an institution or dead. I really couldn't say which of us would go where, but it would happen.
Since this is November (That time of year when AD awareness is in the air?) I think the most important comment is the need for . . . "Specialist training in dementia for health and social care staff"
As an RN I am constantly suprised at how defeceint my education was in dementia! AD was all about 'memory loss' and nothing else. People just forgot their friends, family and eventually themselves. The symptoms of agression associated with frontal lobe destruction and the halucinations were never covered. (I learned more about it here than anywhere else BTW)
The comment "Improving access to other types of therapy, such as counselling" I think illustrates the ignorance among well meaning professionals that dememtia patients can be 'talked to'. Many folks on this board have described their futile experiences with talk threapy involving somebody who is totally lacking a memory.
So are psyc meds necessary? I aint gonna preach to the choir, we know it is, but the lack of training and understanding of dementia symptoms among medical providers cannot be discounted and needs to remeided.
However, on the other side of the coin . . . "The review, led by King's College London expert Professor Sube Banerjee, accepted that for some people anti-psychotic drugs would be necessary. But it said they should be used only for a maximum of three months and when the person represented a risk to themselves or others".
AD is a disease of continual decline. (yes with plateaus) Treatment plans need to account for this too. It is entirely possible that the 'happy pills' truly are approprite for only a short time. A re-evaluation is necessary. If the meds need to be continued so be it, but maybe they are a waste. Even diabetes and blood pressure meds need to be evaluated and adjusted over time.
Prescriptions of Aricept and Namenda have been strongly critized as being a total waste of money that happens only because of drug company promotions. When I studied the critizisms they were all referring to prescriptions in the end stages! Nothing about their use in early stages. End stage & hospice? Sure, I dont think they are going to be of benefit, but dont take them away from the early stage folks!
Again looking at the article from an AD awareness theme, not enough people (professionals and lay public alike) know what the different stages of AD look like. They have never seen it. ("Gee, he seems OK to me") Perhaps as we all share our stories and the public gets to see what REAL symptoms of dementia look like, then things can change.
Interesting but in my humble opinon almost worthlesss article. What did they die from? Let's hazard a guess, which almost as scientific as this article. The article never mentioned what drugs were being referred to, but true antipsychotic drugs...not happy pills...cause patients to fall. Healthy, stong patients fall and with few if any problems. Someone who is old, especially our elder frail patients, can fracture their hips and that will often mean bedrest and utlimately in weaker patients leading to pneumonia and death. Also if the antipsychotic drugs make the patient less mobile pneumonia is again a big problem.
As m-mmm so rightly suggests all medications need to be reviewed and reassessed with your physician. And please note that in the UK as we know...they have stringent guidelines on what the goverment health service will pay for. Money wasted is the bottom line of this article. While this has some merit, I still support that this is a discussion for doctors and patients.
As I read the part about more counseling, I couldn't help but laugh. (sorry). Can you imagine being a fly sitting in on a counseling session with Sid and the others that are on meds? My vision is of them driving the therapist crazy, her/he sitting there pulling their hair out while trying to reason with them. Then prescribing themselves strong anti-depressants/valium to keep from going crazy while they wonder whose bright idea this was. :-)
My husband has Alzheimer's. Earlier this year he suffered from frequent outbursts of anger, and I suffered from his verbal abuse. It occurred whenever a situation seemed in any way threatening, for instance when we had to go somewhere he had not been before, like a medical appointment. He would also angrily refuse to take medicine, to bathe, to wear clean clothes, etc. Yes, I have read the books and try to apply the recommended techniques for dealing with Alzheimer patients, and they do help. But reasoning/counselling are ineffecitve when the patient has lost all reasoning ability, and all possibility of remembering what he has been told or making responsible decisions. My neurologist prescribed Risperdal and the change has been almost miraculous. My husband is now pleasant and cooperative most of the time, so that we are able to have good times together again. I see no ill effects except for an increased appetite, which comes and goes. If it is linked to deaths ... well, it should not be forgotten that most dementias are terminal illnesses. The patient will eventually die anyway, so the most important issue should be to improve the quality of life for patient and caregivers alike.
My reaction is that the article tremendously oversimplified the issue. Perhaps (I hope) the actual report presented things in a more balanced fashion. I cannot believe that anyone who is truly familiar with the ramifications of dementia would agree with cutting back on antipsychotic meds and subsituting counseling. It is an absurd solution.
It was me (I) who sent the article to Joan. I have long been an advocate of judicial use of anti psychotic drugs when all else fails. Just try reasoning with a FTD patient in a full blown rage. However as my husband spiralled down I had him taken off Seroquel.
Yeah, Charlotte, I also laughed about the counselling. How uneducated can these people be? Obviousely they've never tried to "Counsel" an AD patient. Yes, I may eventually may decrease DH's risperdal but right now it is the only thing keeping him from driving himself crazy with his pacing and paranoia. Maybe I'll contact them and ask if they would like to provide "counselling" at that time.
It is almost as absurd as suggesting marriage counseling. What? Good going Jeanette. I wish that just one of those commercials would show the "whole picture." Not just someone forgetting someone's name, etc.
Sid's "counseling" sessions with the psychiatrist who prescribes his Risperdal are typical. It takes him from her office to the elevator to forget everything she said.
When I was in therapy I told the therapist that I was glad she didn't suggest counseling for him. She had obviously seen a dementia patient before. She said that dementia patients can not be counseled.
Now I've just heard it on the Dutch news, too. People are concerned about the rapidly rising cost of health care, one of the concerns is the increasing use of expensive drugs, doctors prescribing them too easily, etc. and one of the examples cited was the use in nh's of antipsychotic drugs for demented elderly. It was called an inappropriate use of a drug that was meant for other disorders.
My reaction: well, let them develop something cheaper then that will work to calm the anxiety of people with dementia.
I'd like to have seen a counselor talk to my DH when he was yelling at me at 2 in the morning about sleeping w/other men. As it happens none of the drugs at that time, years ago, helped DH, some made him worse. But I want to tell you that I rent my children's rooms to college men. One recently moved in, a pre-med student, going to be a neurosurgeon--he's only 22 & still so wet behind the ears, but we talk & I told him that if he was dealing w/the brain, he'd run into dementia patients & their families. This was all news to him. Long story short -- I told him about dementia, how the caregiver is ignored, how docs do not listen, that they treat a physical problem & don't see the connection between that & the 2 am screaming, etc & horrible problems the family has to deal with. I could see his mind opening and taking it in. I told him never to dismiss the caregiver and what is being said, no matter how bizarre. I knew it was moving thru his mind and then he said, 'Would it be OK if I told a caregiver that I wasn't an expert on such things but I'd like to refer her to a doctor who is?' I told him that was a good thing. I wouldn't expect all docs to spend all the time necessary to work w/families on dementia. I knew he was suddenly aware that it was more than his learning about the brain, he'd have to deal w/real people & he was open to doing that. Later he came to me and said he really appreciated what I'd told him about dementia & the family. I felt really good, I know that some families in the future will be treated with respect and that this young man will probably tell his colleagues about such things. Of course, he has to get thru 7 more yrs of school, but I think he'll make it.
In my Alzheimer's Awareness Month Blog (still on home page), I wrote that if everyone who READS this website (there are hundreds of thousands of you), told ONE person about Alzheimer's Disease, think how far and wide we would reach. Betty set a fantastic example - thank you.
I wonder if what they meant to suggest was that the people around the dementia patient get counseling? I could use a few hours of that right now after finding myself grabbing clothes and throwing them around in a fit of frustration. Thank goodness I have only one more day to wait before I check him into a nursing home for four days respite. At this point I don't even care how he reacts to that, I need a break or I'll break.
Lots of us know the feeling, Jules. Just hang on and then when respite starts, LET GO. You'll come back to caregiving refreshed and with more patience -- then you can pick up those clothes :)
At one of my first support group meetings, I mentioned that my wife was declining in ways that were not that like that 'slow but steady decline' many doctors used to describe the course of AD. I said she plateaus, then falls off a cliff, then plateaus, then falls off another cliff, etc. A wise person in my group said something like, "What do doctors know? They just read about AD in books and articles. WE are the ones living with it 24/7." At that point, almost EVERYONE in my group said their spouses also followed the plateau/cliff pattern!! So to all who post comments here who know what THEY must do with THEIR spouses in a given situation despite what 'the research says' ... I say, right on!!
I wish my hb would hit a plateau. Since a year ago his memory has just kept getting worse. He forgets right after what he said although he shocks me when he will remember something we discussed a couple weeks ago. Today he was working on how to build a deck next to the motorhome. I discussed it last Sunday. Near the end of the Patriots game today the Patriots made a bad play that cost them the game. When Indie scored, I mentioned the Patriot play and he had no memory of it. I just wish the decline would stop for a while.
Charlotte, I missed that "bad play", but heard plenty about it at the YMCA during exercise today. DW and I gave up at the half and went to bed. That's the problem with watching evening games - they go on too late.
My husband is very high functioning and we went through several awful years of "counseling". It was always my fault because I was saying things about my husband that would hurt his feelings - according to the "therapist". Things like he CAN'T REMEMBER. The therapist would look at my husband and ask him in soft caring tones, what his opinion was about whatever statement I made. My LO would always say that he and I just had a difference of opinion. That seemed to staisfy all of the "professionals" and we would go in search of another one that perhaps could help us.
You can ask my LO anything and the answer he gives is in an appropriate tone, seems to make sense and not a lick of truth to it. For him, reasoning was the first thing to go - and how on earth is he going to be able to sort out complex asbtract issues like money, feelings and behavior etc with AD. We had to kiss a lot of medical "frogs" but we now have wonderful people that work with us and understand the situation. Thank goodness.
As everyone has said, I think people mean well and think they KNOW, but they just are ignorant of what AD really is. It is sad.
I was a Mental Health Counselor before I retired and worked in a hospital setting with chronic patients. In our screening, if the patients had any type of dementia or loss of cognitive functioning, we could not admit them into our program. If they were not able to work on abstract issues regarding feelings and behavior, mental health therapy isn't going to work. It is called "fraud". But there are a lot of programs that take them and suck up the insurance money. I hate to say that, but it is true. I think the families go along with it - and I understand their viewpoint. It gives the patient a place to go during the day.
I think the article is useless and even more offensive is that so called "professionals" recommend counseling for individuals with severe memory loss. When my DH was first admitted to a psychiatric hospital for his aggression, he was in the admissions unit where they hold counseling sessions daily. I spoke with the social worker who told me they allowed him to attend the sessions, but counseling would not help him because of his dementia. As dagma3 says, dementia patients cannot work on abstract issues regarding feelings and behaviors. Having said all that, I am concerned about the Seroquel but since it is the only med which controlled his aggression, I will not take him off of it because as carosi said one of us would be dead and one in jail. Not sure which one would be which.
I have a definite problem with the "experts" on dementia care, drugs etc. There are too many that follow a specific protocol that is not appropriate to all, or they work on therory that does not fit or even worse, they have never lived with a person with dementia and have little to no actual understanding. Too many unknowing people read these articles, believe them and start spouting the words in it to others.
I found some very good doctors for my husband and I think the had a terrific understanding of the disease and its affects but I always felt like something was missing in their understanding. You ever tell someone the absolute truth, knew they heard you but didn't believe a word you said - sometimes I felt just like that. I've run into that feeling with several medical professionals. The ones that didn't give me that feeling were always the ones that had first-hand, personal experience with AD.
After reading of the concerns about the "Black Box " drugs, and using some of them for my DH, and seeing all the entries here on AS from everyone else using them---AND not seeing any related report of deaths from them, I wonder how "real" the dangers are. Or is this a case of warnings because the studies to determine if they are safe for senior dementia patients haven't actually been done---just warning of "Possible" dangers? DH has Vascular Dementia and some of his meds warn they might cause a Heart Attack or Stroke. He's on other meds to reduce the risks of Heart Attack or Stroke. The Psych meds help control anger seisures, mood problems, etc. I'm playing Pharmacist every Sat. with 11 Rxs and 2 OTCs for him, counting them out for the week. He's alive, doing pretty well for someone in Stage 6, and still home. With VaD, he could have a Stroke or Heart Attack at any time just from that. It is what it is.