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Discussion in 'ARCHIVE FORUM: Support discussions' started by Skye, Dec 1, 2007.
Investigation into the use of anti-psychotic drugs for dementia patients.
I did mention it in this thread they was some feed back on it and what it about
Thanks, Maggie. I mentioned it earlier too, but posts tend to get buried in other threads, I thought this would be of interest to a lot of us, and should have a thread of its own.
Good idea Hazel
Here are more details.
If like me you find the whole idea of watching this documentary upsetting. Please feel free to post your thoughts and concerns.
It is a painful subject for many of us who are given little choice. Alternatives to medication are few are far between and it is difficult to deal with the guilt when you are responsible for someone's care.
Not saying it isn't good to see such a doocumentary aired, and I have respect for the courage of Cheryl Byrne (the daughter who went under cover), lets just hope they provide some viable alternatives for a change rather that just causing yet more sensation on the subject.
why was he not treated with AZ drugs late stages or even offered we all know that answer
So do I Craig , because when you say Alternatives to medication are few are far between , or are any other type of medication . that what wind me me up in this country as they won't give out medication for late stages of AZ , but they give out those cheap drugs left, right Centre .
Us the carer trusting them NHS . why should people with AZ put up with 2nd class medication just to shut them up even if they not violent just to make life easier for the staff in care home
No bring it on Bring it all out about anti-psychotic drugs has no benefit and can shorten patients' lives , so more People power
to fight for they rights for proper dugs for people with AZ
I felt right let down with the AlZHERMERS SOCIETY when they lost the case in the high court for not pushing it further .
So now they campaigning for training for dementia care staff
for god sake government can't implement human rights act in privet care home , god have to or it all just wind me up
I am going out tonight so won't see it am glad now after seeing the
little write up it got on the Main site of the AlZHERMERS SOCIETY if they not worry about it what hope is they left of ever
getting the right medication in this country for people with AZ
and yes I know AZ medication does not work for everyone , nor does anti-psychotic drugs so let them have the choice of both dugs in Care home
I'm not sure this will be covered. But it would help with a balanced view, we will have to wait and see how they handle it.
Unfortunately I don't think the Alzheimer's Society can get NICE to think straight these days. NICE seem to live in a world of their own.
The Society tried very hard and raised awareness on the issue. It wasn't there fault so I don't feel let down by the society. I also feel they continue to fight on this and many issues. Raising awarness is half the battle, then it is down to keeping momentum.
It looks like the documentary is going to be about the affect and long term use of the kind of drugs that many people with dementia are prescribed every day (anti-psychotics). I don't think they will touch on Aricept and the like.
I'll reserve judgement on the balance until after viewing the documentary.
BTW - if you miss it the BBC normally keep recordings of Panorama at:
Thanks for that, Craig. The ex headteacher at the school where I was Chair of Governors, emailed me about the programme. The daughter, Cheryl, is a friend of hers.
I will only watch it if I can make sure Dhiren is otherwise occupied. If I miss it I`ll use your link.
I have read the notice from the AS and am confused. There seems to be referral to sedating drugs in the same breath as anti-psychotics, and there doesn`t seem to be any differential between care at home, and care in Homes.
So if it is reccommended that care home staff have adequate training to manage challenging behaviour, instead of using drugs, where does it leave the relative who cares at home.
These are only my first thoughts, not having seen the programme. I can only say that since Dhiren has been taking anti-depressants which have a sedatng effect, life has been much easier for me. If he became very agitated and challenging, I know I would be willing to consider stronger drugs.
I also know, with hindsight, that my mother was heavily sedated in the first home she was in. But in those days, [just over 10 years ago], she was routinely prescribed an antipsychotic, by her GP, while she was still at home. The drugs were given in the home, without my knowledge, simply because she continually walked the corridors, and they wanted her to be still.
I think the problem with the use of drugs in care homes is not just down to training of staff, but the ratio of staff. If drugs are withdawn and anxiety or behaviour changes these can be very difficult to deal with without one-to-one care. I think people expect a lot from care homes as it is. Complicated one.
I'm definitely not saying it is easier if you are caring at home, quite the contrary. The main advantage someone caring at home has over the care home staff is that they are likely to quickly pick up on changes if medication is changed. The one-to-one care a home carer provides gives a special insight (that was my experience when mum cared for dad at home).
The key is to make sure the medications are reviewed (in my opinion) and I think this may be brought out in the programme. The problem is not knowing how a person will react when meds aer changed and people are often uncomfortable with change.
I think part of the documentary covers an experiment in a home where half the residents on drugs had them withdrawn (the other half remained on the same drugs). They monitored the results carefully. Sounds a bit suspect to me.
Wish there was a simple answer
I've long since given up banging my head against a brick wall. After 4 years and 8 months since removing my wife from a NH and returned a bag full of drugs they were giving her, she's improved. How would any healthy person feel about being 'put away'? Depressed, anxious and yes agitated, it's not medication that's required, but treat the underling causes.
At the moment I'm upset and recovering from shock.
Tuesday evening I'd just washed and changed Jean's pad, went to empty the basin of water, ( less than 30 secs) I returned to find her laying on the wooden tiled floor in a large pool of blood. How she ended up there I know not, must've had a spasam/jerk which resulted in her sliding off. She was unable to break her fall due to lack of movement.
Once again I had to fight with hospital staff to remain with her at all times. They soon got the message, that it was to everyone's benefit I was present. Her nose is broken, chipped tooth, split lip, and a number of facial fractures. After 33 hours I convinced them to send her home to me. All I required was a Nurse to pop in to treat her eyes, which were closed with the swelling. By last night she has improved considerably and so have I. It does meam of course, I have extra tasks in my caring roll. To date we see a Nurse twice a day for a few minuets. I'm expecting to dispence with their help in a day or so, as her eyes are OK. I thank God that she was in such good health, as our daughter said, "Just as well it didn't happen in the year after she came out of the NH".
Still haven't seen a GP and couldn't tell the hospital who her GP was, don't know! No big deal, after the hell he've been through over the past 12 years, I'm hardened to it. It's a steep learning curve.
Chin up and fight the good fight God bless you carers. Padraig
Oh dear Padraig, I'm so sorry to hear about Jeans's injuries.
It's obviously something you'll have to watch: her position when you're changing her (not that you aren't but you know what I mean). Do you think changing her on the floor might be a safer option for the future, or is that too difficult for you both?
Jennifer, Thanks for your intrest. Sorry there's no way I can change her on the floor. I weighed 147lbs on the Monday, this morning I was 142lbs, Jean's around 120lbs dead weight, her body is rigid. I've been promised a guard rail, but no sign of one to date. As has been so often said, if one's managing on their own your left to get on with it.
It's more frustrating for me seeing the inefficiencies in every aspect of the systems, relating to treatment and caring for AD. The reason I was able to retire at age 54, was because Lockheed offered me a post at sorting out every aspect of Support Services. I was paid on results. Though I had no knowledge of, Catering, Transport, Auto Maintenance,Security, etc. etc. It covered every aspects of running a town. I found working for Americans that they were more interested in results, rather than scraps of paper with qualifications. I've had no formal education and am now referred to, as a one off who keeps pushing the boundries, just because I chose to look after my wife in my own way.
A young Asian Lady Doctor at the hospital looked at me in surprise :"Where are you from, I've never met someone who cares for a loved one so far gone all on their own?" I understood where she was coming from, and remarked I'd noticed no Asians in NHs. This is Western Society, in which it takes decades to make social changes. Action is what's needed, not paper, taking and meetings. The best Professionals in the field are the long suffering carers.
Sorry for the rant, Jennifer, like so many caregivers your special. Padraig
I'm assuming you've read the press release on the homepage of the AS website...
From speaking to the press team, I understand that the use of language in this statement is such, so as to be consistent with the content and focus of the Panorama programme. There are of course other, milder drugs which may also have a sedating effect (such as anti-depressants) but the extreme sedative effects of the anti-psychotics is one of the focal points of this programme.
Equally, the programme focuses on how dementia care is managed in care homes, and on the apparent over-reliance in many care homes on anti-psychotic drugs, when other alternatives may not have been explored.
The Alzheimer's Society's position is that anti-psychotic drugs are over-prescribed to people with dementia. However, it is important to acknowledge that there is always a 'balance of risk' when prescribing these drugs - whether the person with dementia is living in a care home or in their own home. For some people, the balance may be such that prescription of an anti-psychotic drug is the most appropriate option in a very difficult set of circumstances.
If you have not already seen it, then the link below provides a lot more info - including a Q&A session with Dr. Clive Ballard, the Alzheimer's Society's director of research, and our information sheets about drug treatments, and non-pharmacological alternatives.
Hope that helps a little,
thanks for this.
By the way, brilliant page to link; lots of information, plus a plug for TP! The new format of the site working perfectly and in a most timely manner! [well done Said et al]
Thank you Katherine.
I have not read the link yet, but will try to read it beore I watch the programme.
Edited to add;
What a good link. I will be very interested in the question and answer session after the programme.
I've read the FAQ and it is helpful to a point. Information is always good.
I do agree with the advice on constant reviews on medication.
As always I see little substance in real alternatives to the medication used as part of a care plan.
I really can't see these examples taking over from powerful and effective medication, sorry.
Personally I think we need better proven alternatives and some serious research regarding new alternatives.
I agree with you Craig. I'm all for those alternatives but I've seen nothing to indicate that they work for much more than the time when they are actually taking place - who can be doing aromotherapy 24/7?
Thoughts On The Use Of The Word "suspect"
A thought to Craig, in advance of this evening's Panorama programme, which none of us have yet seen, so I reserve judgement until after transmission.
So meanwhile, may I just add the following thought:
You say that you think that part of the documentary covers "an experiment in a home where half the residents on drugs had them withdrawn (the other half remained on the same drugs). They monitored the results carefully. Sounds a bit suspect to me."
All I wish to add is that there MAY BE NOTHING WRONG with such a LONG-TERM STUDY BY A REPUTABLE EXPERT IN THE FIELD OF DEMENTIA. I reserve judgement until I have seen the programme tonight, which I will try to do.
My own husband would not be alive today if he had not VOLUNTEERED to be part and parcel of a STUDY / TRIAL / CALL IT WHAT YOU WILL, 10 years ago now. Nothing to do with Dementia or AD, but a STUDY / TRIAL nevertheless. Yes, it was traumatic for me and more importantly for him. But without such a STUDY / TRIAL, call it what you will, he would not now be alive and well and thriving today, and neither would many many other people. His medical "condition/disease" is far more likely to cause death within one year than is AD or Dementia of most kinds.
So on behalf of all his fellow-sufferers-from-the-same-medical-condition and on behalf of his Consultant, who was a renowned Expert in the Field, as are his successors, then all I ask is that nobody should condemn or question or describe as SUSPECT a STUDY by an expert in the field, until such time as they have read further and evaluated the results of that same study.
Sorry, Craig, if I appear somewhat harsh, but I fear each and every time I read something which may frighten the pants off anybody who has not the ability - or even just the energies/time/wish - to question further that which they read.
Hey Katie, not at all harsh, you are right. When I said the experiment was 'a bit suspect', I was a little harsh. I apologise; particularly as that comment was made before even seeing the programme
I'm as keen as anyone to finding an decent alternative. Just get upset when I read articles and see programmes condemning one option without giving viable alternatives all the time. If this programme comes up with any research and discussions on viable alternatives I'll be very happy. Just not too impressed with the current suggestions that I quoted today.
I'm all ears honestly, but particularly keen on researchers finding solutions, not just highlighting problems all the time.
Hey, Hey, Didn't Mean To Thrash You!!
I really don't think it is possible for every TV programme to come up with ALL the available and viable alternatives. The programme has a purpose to follow, and (may be wrong, but ...) this programme's purpose is to explore that which is possible abuse/overuse/misuse of anti-psychotic drugs. We all SUSPECT that the use of such drugs may be more for the convenience of STAFF than the patients/residents/sufferers.
Dunno, yet, cos haven't seen programme, but it is just not possible for any one programme, or newspaper report, or radio prog., to come up with as many alternatives as would satisfy each and every viewer/reader/listener.
We are all different, and each one of us has our own theories - I know I do!!! - about that which might help our own people.
Shall we resume this debate after we've seen the programme? Then, hopefully we may be able to add CONSTRUCTIVE comment, as opposed to (MY NORMAL HABIT OF ADDING) NEGATIVE comment!!!!
Look forward to talking later ....