Experience and views of medication for hallucinations?

[biggirlsdontcry]

I'd like to know other people's views and experience of medication, particularly anti-psychotics and alternatives, for treating hallucinations.

Mum has probably had Alzheimer's for 5 or 6 years. She is now hearing and seeing things which cause her distress - violence, people killing and hurting each other. She has been on a very low dose of Seraquel for about a year, because she thought people were in her bedroom at night and were attacking her. The Seraquel did the trick. A couple of weeks ago she had a TIA and since then, she has been hallucinating and has also been quite tearful - very unusual for her.

She is in a lovely caring residential home, owned and run by a family, with just 9 residents. She's been there over a year, I'm really happy with her care and have great trust in the owner/manager. The GP and care manager are suggesting putting Mum on a low dose of Risperdal rather than increasing the Seraquel, since it seems not to be effective in present circumstances. I've done some internet researach on Risperdal and know there are views that it should not be used with Alzheimer's sufferers, and also that there is some evidence of increased risk of strokes. Our objective is to stop Mum seeing these horrible things and being upset by them.

I'd be really interested to know others' experience of how upsetting hallucinations have been treated.

With thanks

 

[Nebiroth]

My dad hasn;t had actual hallucinations but has and does have very bad paranoia and delusions. He has just had his Seroquel increased to 325mg a day to help combat this and the agression.

I know that there are views that anti-psychotic demication shouldn;'t be used with dementia patients, but I am also have the very firm opinion that in some cases it is justified. I don;t think its justified when it is used to make the lives of care staff easier (the so called "chemical cosh").

But in your mother's case the hallucinations must be terrifying if they are of people hurting and murduring each other, particularly if she is unable to recognise them as hallucinations. Some patients have "benign" ones, or realise they are not "real" even if they continue to see things.

Obviously in your mum's case this is causing her great distress, I would put your faith in the experience of the doctor (although I wondering why a specialist such as a psychiatrist who deals with dementias hasn;t been called in).

In all liklihood they will start with a minimal dose, which may increase, until the lowest dose that achieves the desired result is found.

Unfortunately with these drugs the reaction is very individual, so it may take some time to find the most effective dose of the drug that suits mum best.

Also the benefits may take some time to show, although I believe that in the case of hallucinations, the effect is more rapid than is the case with delusions, because delusions are so entrenched into the thought process.

 

[Lanie]

Hi

My Mum has had very bad delusions, that for a few months took over her life and the voices she heard were her life and we were not able to do or say anything to make a difference.
Due to this she wouldn't eat, drink, couldn't sleep and wouldn't take any medication believing that items were poisoned, police were coming to arrest her, the house had been burglar, the neighbour was calling for help as they were being tortured the list was endless.
It was all very distressing and upsetting and she was finally admitted to hospital. She was originally treated with Quetapine but after a few weeks there was no improvement. She believed the staff were trying to kill her and would barricade herself in her room, she was weaned off this and started on Aripizole and has been on it since on varying doses. her symtoms haven't completely gone she still hears voices but they are no longer distressing, as she now thinks she hears people calling her or the phone ringing things along those lines.
She is on the rivastagmine patch for Alzheimers and a maintainance dose of Aripizole. i'm not sure whether she'll stay on it.
All I can say is that her day to day life has drastically improved because of it. When my Mum had delusions it was heartbreaking and there was nothing we could do.

Lanie

 

[alfjess]

Hi

My Mum was taking quietiapine(seroquel) low dose for approx 1 year. It worked very well, but Mum came to the stage where she was refusing medication and became very agitated.

The Psychiatrist then phoned me to say he wanted to prescribed Risperidone, but there had been reports that this drug caused strokes.

At the time the residential home couldn't meet her needs, so I felt I had no choice other than to agree, but unfortunately, after only approx 10 days, Mum did have a bad reaction to this drug. Stroke or not, I don't know, but risperidone was stopped, then various other drugs were tried, but that is another story.

Some drugs work for some people, but need very careful monitoring and experienced staff on hand to monitor

Love
Alfjess

 

[May]

Hi

My Mum had terrible hallucinations and delusions when she was at home. She went to an assessment ward and was prescribed Haliperidol (an older style antiphsychotic)and was on this when she came home, however I had a chat with her doctor as I thought this was too much of a chemical cosh, she was always drowsy. She was then prescribed Risperidone, this has been extremely successful in dealing with the hallucinations/delusions, this was two years ago. She is now in a nursing home, but we have kept an eye on meds and dosage has been adjusted downwards, she is now on a very low dose. About a month ago we asked if we could try without the risperidone as Mum had been calm for a long time now.After about a week without the drug she started to become agitated again, therefore she was put back on the drug and again has become calm.
My personal feeling on antiphsychotics is it is a balancing act between a desire for best quality of life for our loved ones, hallucinations are/must be horrendous for them, and the need to be aware that meds must be continually adjusted to suit the individual. I would say be guided by the doctor, BUT always keep an eye out yourself for any changes.

 

[Margaret W]

My mum has hallucinations or delusions, I don't know the difference cos no-one has told me. It was only by chance that I learnt that the GP had put her on a new drug. No-one has properly told me what it is called, a care worker tried to tell me what it was but couldn't remember the name. It is one that shouldn't be given with grapefruit juice, but when I told the staff that, they had never heard of that restriction.

I have no contact with the GP, don't even know who mum's GP is, of course none of us have any entitlement to know what drugs our parents are on or any details at all about their medical care.

Mum has started to imagine she is being kidnapped or being robbed and is distressed about that. But I am not entitled to know any of this, cos it is personal information. My power of attorney only gives me access to financial information.

So how do you all know what medication your mum or dad is on? Or how well it is working? As far as I understand you have no right to this information. Why can you get it and I can't?

Margaret

 

[biggirlsdontcry]

Re info on meds

Thanks to all who have replied so far. It's very useful to have extra data and to know that despite antipsychotics not being designed to treat Alzheimer's that there are postive as well as negative results.

To Margaret W. It's never really occurred to me that I shouldn't really know what meds Mum is on. Her doctors and carers have always been very open and discussed options with me. I think this is good practice. Maybe it's a question of the people involved and how easy or otherwise is it to build some sort of relationship with them.

 

[Nebiroth]

My mum has hallucinations or delusions, I don't know the difference cos no-one has told me.

Halluciantions are actually experiencing things that aren;t real - the most common are visual (seeing things) or auditory (hearing things) but you can even get ones that are tactile (touch) etc. Someone with hallucinations will point to something that isn;t there and ask why you can;t see it, or say "you must be able to hear those voices" etc.

Delsuions are false beliefs - for example, that food is being poisoned, that someone is spying on you, that sort of thing.

It is quite possible to have both, and for delusions to be based on hallucinations. It can be difficult to distinguish between the two.

It was only by chance that I learnt that the GP had put her on a new drug. No-one has properly told me what it is called, a care worker tried to tell me what it was but couldn't remember the name. It is one that shouldn't be given with grapefruit juice, but when I told the staff that, they had never heard of that restriction.

Grapefuit juice (and indeed, whole grapefruit but to a lesser extent because the juicing process means you take a lot more in as you wouldn't be able to eat that many whole grapefruits!) interracts with many drugs, as I recall one of the factors is the enzyme that gives grapefuit it's bitter taste. The effects can be different, for example it can reduce absorption of some drugs like those given for hayfever, cancer and ones given to people after transplants to stop rejection. This means you don;t get the full dose.

On the other hand, it increases the amount of other drugs in the bloostream by increasing the absorption or slowing down the process by which the drugs are broken down by the body, this can mean that getting a higher dose than you think you;re taking. Anti-psychotic drugs fall into this second category.

The usual advice, therefore, is to not drink grapefuit juice whilst taking them.


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[Margarita]

I believe that in the case of hallucinations, the effect is more rapid than is the case with delusions, I believe that in the case of hallucinations, the effect is more rapid than is the case with delusions,

because delusions are so entrenched into the thought process

Glad to read that ,because that the stage my mother in at the moment, its not coursing her distress , but its sure hard on me coping with it .

My mum has hallucinations or delusions, I don't know the difference cos no-one has told me

Margaret seeing now that your have retried now , your have more time to read up on it, to understand the different. I only know so much about it , because my brother had Schizophrenia for the last 30 years .

Auditory Hallucinations: is hearing voices The voice may be heard either inside or outside one's head and is generally considered more severe when coming from outside one's head, also hallucination is seeing, hearing, tasting, feeling, or smelling something that is not there.

This site explain it better then I can in what the different is from a delusions Hallucinations

http://www.patient.co.uk/showdoc/40000586/

 

[christine_batch]

Dear Margaret,

I can not understand why you are not given the information regarding medication.

With regards to Peter, his Care Plan, medication in fact all his medical notes I check on.

The Nursing Home, even keep me informed when the Doctor has been to see Peter and I can be there when this is happening.

I know you have enough to do but this is something you should have access to.

Best wishes
Christine

 

[Nebiroth]

I'm not sure that you have an absolute right to know anything about a relative's medical condition or treatment, but most doctors, surgeries, hospitals and care homes are willing to involve relatives - particularly the "nearest relative" - and to keep them informed about the general condition of the patient and the treatments being used. Obviously, most relatives will already know that the person has dementia anyway!

As far as I know, though, there is no obligation to seek the permission or opinion of relatives when it comes to treatment (excepting where someone has LPA) - this is strictly between the medical professional and the patient.

 

[Marianne]

Margaret ask to view the care home notes and the MAR charts. If you have POA this is your right. The home should have told you this, I held an EPA for my dad but it was 18months after going in the home that I was told it was my right,but only after reporting abuse and the Manager threw the notes at me. That was one way of finding out your rights.