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Last Updated: Monday, 3 December 2007, 16:18 GMT
Experts' Advice
Following Panorama 'Please Look After Dad', two experts, Doctor Andrew Barker and Professor Clive Ballard answered a selection of your questions about issues raised in the programme.

You can read their responses below.

If you would like to talk to others for support and advice, you can do so on the:

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Doctor Andrew Barker is a Consultant in Old-Age Psychiatry. He has held positions of responsibility within the NHS, the Royal College of Physicians, the Department of Health and the Healthcare Commission.

Professor Clive Ballard is the Director of Research at the Alzheimer's Society and a leading Old-Age Psychiatrist at Kings College London.


My father is 76 has Alzheimer's and was prescribed risperdal he was on these tablets for 6 days and the damage has been horrendous, he can no longer walk or co-ordinate anymore he was in hospital for 11 days and was given no medical treatment, they could not give us any information on his condition and every time we mentioned risperdal they failed to come up with any answers he is also very aggressive at times. I only asked the doctor for something to keep him calm at nighttimes as he was sundowning.please HELP
Caroline brown, Glasgow

Doctor Barker responds:

I'm not sure from your description why your father was taken into hospital, and what the aggressiveness was due to. It sounds as though he isn't in hospital any more. You should ask your fathers doctor why he is on the medication and what the plans are to review and reduce it, as most people prescribed medications can stop them in due course. You should also ask the care home (if he is there) what their care plan is for looking after your father when he is distressed. You should expect to be able to contribute ideas to the care plan, as you know your father's likes and dislikes better than most

Doctors sometimes respond with medication as they misunderstand families concerns. There is no harm in writing your concerns down and then making an appointment to discuss them. Sometimes these medications do help with aggression when carers cannot cope, but their benefits need to be weighed carefully against side effects, and alternative means to understand and address the difficulties should always be sought.

Professor Ballard responds:

This is clearly an extremely distressing situation. Our work has mainly looked at the long term effects of these types of tablets, but sometimes there can be more dramatic side effects over a period of a few days. It is difficult to comment further without a full knowledge of the situation. Presumably the risperidone tablets have now been stopped? In my own clinical work, we would probably try to see how someone was over a few weeks without medication, and then make a careful re-evaluation at that point about further treatment. Although the delay is frustrating, sometimes rushing can cause further harm

My father suffered a major stroke in March and has dementia as well as physical disabilities. Whilst we were trying to care for him at home after release from hospital, he was aggressive and was prescribed Haloperidol; is this one of the anti-psychotic drugs referred to in the programme? We almost lost him on 2 occasions this summer, as he seemed almost catatonic (he was in a nursing home by this stage). He was also given sedatives, as he was restless at night. We felt he had been drugged too much.
Jill Horton, Stourport-on-Severn, Worcestershire

Doctor Barker responds:

Haloperidol is one of the older antipsychotic, and is sometimes used in general hospitals as it is felt to be safer for people with cardiovascular (heart and artery) disease. However, it can also can cause stiffness. It would be worth discussing with care staff and his GP whether the medication is necessary and what it is being used for, whether it could be reduced, and what other interventions are being used to help with any behaviour difficulties. The Alzheimer's Society or local advocacy services can sometimes help if you don't get any helpful progress.

Professor Ballard responds:

This is a distressing situation. Drugs like haloperidol do have a small but important place in the short term management of severe problems that cause risk or distress, but they can have very unpleasant and serious side effects, and are often used when other approaches with less side effects could be tried first.

I would like to ask one question following on from that programme: Why does a Care Home have the power to prescribe anti-psychotic drugs? We are repeatedly reminded that Care Homes are not "Nursing Homes", and that the NHS does not provide free-of-charge long-term NURSING care to most people with dementia. So what empowers a Care Home to prescribe anti-psychotic drugs? Janie
Janie, England, Berkshire

Doctor Barker responds:

The simple is answer is that care homes don't have the power to prescribe medication. Generally only doctors do (there are a relatively small number of nurse prescribers).

The real difficulty is the interface between care homes and doctors. Doctors are by and large not experts in nursing care for people with dementia. When they are asked to become involved with behavioural difficulties then it is usually because the care staff cannot cope. Sometimes there are medical problems causing the difficulties (and these should always be checked for), but often the perceived problems are due to the dementia itself.

While I would like to say that all care homes give excellent person centred care, with well trained, skilled and motivated staff in purpose designed environments, this is not the case. Doctors sometimes feel put in the position of having to prescribe as it is the only thing they have to offer that will help the person remain in the home (which is often what families and care staff ask for). If there was better staff training and development, better support for carers working in sometimes challenging situations, doctors wouldn't feel drawn into prescribing so easily, as there would be real alternatives available.

Professor Ballard responds:

Care homes do not directly prescribe medications, these are prescribed by people's General Practitioners or specialist doctors involved in the care of a person. Only a partnership between people, their relatives, care homes and doctors is however going to tackle this problem.

I am a Trainee Clinical Psychologist about to design a behaviour management skills group for Health Care Support Workers in the NHS. What key elements would you suggest should be included in the training?
Best wishes, Lawrence Patterson
Lawrence Patterson, Southampton, UK

Professor Ballard responds:

I think trying to understand the perceived problems of care assistants and making the training relevant to their needs is probably the most important. In our experience, simple tool box approaches such as those described by Jiska Cohen-Mansfield and colleagues are easy to train people to use and work well.

My Father has just been diagnosed with early stages of Alzheimer's, he is 72, should he be prescribed medication? what is the difference in medication for Alzheimer's and dementia?
Alyson, Appin Argyll

Doctor Barker responds:

There are some anti-Alzheimer's medications available which can help cognitive functioning and daily living skills (trade-names include Aricept, Reminyl, Exelon, Ebixa). These generally have relatively few side effects and can improve quality of life. These are very different from the medications being described on tonight's Panorama, which are sedatives prescribed for difficult behaviours.

Professor Ballard responds:

Dementia is a general term for a group of progressive disorders that affect the brain, causing difficulties with memory, thinking and every day function. Alzheimer's disease is a specific brain disease, and is the most common of these conditions, affecting about 500,000 people in the UK. Regarding tablets, it depends on the types of tablets. There are drugs licensed for the treatment of mild to moderate Alzheimer's disease - these are 3 of these treatments - called Aricept (donepezil), exelon (rivastigmine) and reminyl (galantamine), all of which work in a similar way by boosting nerve transmission in the brain. These treatments all give modest benefits to most people. The types of drug discussed in the panorama programme are completely different, and are sedative treatments often given to people with Alzheimer's disease if they develop problems such as aggression or restlessness. These treatments do have potentially serious side effects and should be used only in serious situations and with great caution.

My father was diagnosed with Parkinson's and given drugs to help the symptoms. He still had tremors and added symptoms of hallucinations, memory loss and was prescribed quetiapin, which resulted in aggressive behaviour and trouble communicating (though I believe he understands what is said to him). We have requested he be taken off the medication, after 2 years of requests, this is now happening. The Consultant has now questioned whether my father even has Parkinson's (my father has had tremors since he was a young man - he is now 81) we believe my father has improved somewhat but is still being sedated because of "behavioural" problems. Is it possible my father has DLB, and what would be the treatment for this. At one point it was suggested that he was at the most severe state of dementia, and the hospital were recommending a high security care environment. Thank you in advance.
Deborah Smith, Watford, Herts.

Doctor Barker responds:

It is possible your father has Dementia with Lewy Bodies (DLB, or Lewy Body Dementia). There is some evidence that the anti-Alzheimer's medications can help with DLB (such as Aricept / donepezil, Reminyl / galantamine and Exelon / rivastigmine), and they would certainly be worthwhile to try if they haven't already. It sounds as though your father's current consultant is open to new ideas and I am sure would be willing to discuss your thoughts.

Professor Ballard responds:

Antipsychotics -the type of drugs discussed in the programme, can be particularly problematic in people with dementia related to Parkinson's disease or the similar condition of dementia with Lewy bodies (DLB), as some people can have sensitivity reactions and the tablets can make the symptoms of Parkinson's disease worse in these individuals. There is also less evidence that the tablets actually help psychiatric symptoms or behavioural symptoms in people with these conditions.

There is now good evidence that antidementia drugs such as exelon (rivastigmine) or aricept (donepezil) are beneficial in people with these disorders, and that they can help psychiatrist symptoms -particularly hallucinations. In people with dementia related to Parkinson's disease or DLB these are probably a much better drug treatment than antipsychotics.

My elderly aunt of 92 was diagnosed two years ago with Charles Bonnet syndrome i.e. seeing images of children in her care home bedroom. She was a head teacher in a primary school for over 40 years. She has been prescribed at various times with Sulpiride, Gabapentin and is now on Quetiapine 50mg at 9.00pm each night. After close questioning of nursing staff, we are told that she does NOT have dementia. She has never been aggressive; in fact she is as quiet as a mouse, a fact acknowledged by staff even before she was given any medication. The images do not upset or frighten her although they are very real to her and it took a long time to convince her that they were not real but she now accepts this. She has never married and has no children so I am her closest relative. I am very worried that these drugs are destroying a very educated mind. She has a shuffling gait and is slightly stooped and is very forgetful and gets recent events and times mixed up. This never happened before these drugs were administered. Is there any medical reason why she should be on Quetiapine?
Michael Foley, Glasgow

Professor Ballard responds:

Charles-Bonnet syndrome is quite common in older people, and usually related to eye problems such as poor visual acuity or cataracts. There is certainly no evidence that it responds to antipsychotics. If the visual hallucinations are not causing distress, then my usual clinical practice would be to avoid prescribing antipsychotics anyway as in those circumstances the risks outweigh any potential treatment benefits.

My father has multi- infarct dementia and has some angry outbursts usually about every 2 weeks are these likely to increase and what is the best way of dealing with them? He was assessed a few months ago for anti-cholnesterase inhibitors but refused as he was too far advanced. I have considered purchasing these from the internet and trying him on a trial basis what do you think, Thankyou
Jill Branch, Worksop England

Doctor Barker responds:

Difficult behaviours do not necessarily increase over time. Often people will go through a phase of difficulties and then these will wane.

Anger and aggression is very difficult to cope with when it is from someone you care for and when it is out of character, and you should really have help and support in dealing with it. It is difficult to give specific advice by email. The local specialist older people's mental health team is probably the best first port of call and your father's GP should know how to refer him. They will probably allocate a community psychiatric nurse, who could talk you through some possible approaches and other local resources to help your father and yourself. The Alzheimer's Society is a very useful source of information and local support and advice, and it would be worth contacting them also.

Although people with vascular dementia do not generally get the same benefit from anti-Alzheimer's medications as those with Alzheimer's disease, if your local service is unable to prescribe, then you might want to try it. I have certainly had some people who have got some help with these medications in the past, but be realistic in what benefits you would like to see, and recognise that they are not miracle drugs. You should only use the medication with local doctors' involvement, as there may be medical conditions or other medications that would make this hazardous.

Professor Ballard responds:

Many people with dementia are vulnerable to experiencing angry outbursts. These can be related to a number of different factors - sometimes they can be triggered by certain events, sometimes by pain or sometimes by part of the illness (such as mini-strokes in people with vascular dementia). It is therefore important to try and assess the situation carefully to try and identify the trigger - so that a specific treatment can then be tailored to the problem.

Regarding cholinesterase inhibitors - these are not currently licensed for treating people with vascular dementia. There is evidence that some people with vascular dementia can benefit -but the size of the benefit is probably only about half as big as for people with Alzheimer's disease. I wouldn't discourage a trial of cholinesterase inhibitors -but don't expect too much.

The best evidence for treating vascular dementia is really related to the very tight control of medical risk factors such as blood pressure, cholesterol and diabetes - if any of these are a problem for your father -it is important that they are regularly reviewed and treated effectively, that will make a difference.

Hi there - really interesting documentary tonight. I currently take Seroquel. I'm 27 and prescribed it along with 80mg fluoxetine for bipolar disorder. Is this something, following research, that you would recommend be given to someone my age?
Claire Standen, Bristol, UK

Doctor Barker responds:

You are probably taking the right medication. Medications such as Seroquel (quetiapine), olanzapine and risperidone were designed for people with schizophrenia, but some have since been shown to be helpful in people with bipolar disorder and some other mental illnesses. The concerns expressed in tonight's programme were that these medications are now being used in dementia in a way that they were not designed for and are not licensed for. Although they can sometimes be helpful in people with dementia, older people and particularly those with dementia are more prone to side effects and the evidence of benefit is modest. You should be able to talk with your doctor about the medications you are taking and why these ones were chosen, but they are probably being used appropriately.

Professor Ballard responds:

The side effects talked about in tonight's programme were very specific to people with dementia -who are vulnerable to serious side effects from these types of treatment. These types of drugs are very effective for the treatment of schizophrenia and mood disorders. The drugs do have some side effects in younger people with these disorders, but the more serious concerns such as the increased risk of stroke, death and decline of memory are only seen in people with dementia.

Thank you for a really excellent programme. My mother has been diagnosed with paraphrenia and early dementia. She has been prescribed olanzapine which is making her extremely drowsy and seems ineffective as far as her delusions and hallucinations are concerned. I would like to ask her and her consultant to consider withdrawing it for a trial period. How likely do you think it is that the consultant will agree and how long do you think the trial period should be? Do you think it is too risky to take her off it? Many thanks
Ellie, Leeds

Doctor Barker responds:

Antipsychotics such as olanzapine can be effective for hallucinations and delusions, but don't always help. It is always important to balance benefits and side effects. Doctors see people for a short time only at the appointment and it is important for them to have feedback on the rest of the period in between appointments. There may be other medications that haven't been tried that would be more effective and have less side effects.

I would hope that the doctor would be very willing to hear your concerns and observations. Indeed if your mother has significant cognitive impairment as part of her dementia then your views should be sought and incorporated into care planning as you mother may not have the mental capacity to consent to prescribed medications herself.

Why not ask you mother if you could see the doctor with her? You need to check that she is happy for you to be involved though.

Professor Ballard responds:

Did the paraphrenia develop before the dementia? If so this is a much more complicated situation - as the treatments do have more clear benefits in people with paraphrenia, and the risk of relapse after stopping treatment is greater. A full discussion with her consultant is probably the best way forward.

My father aged 68 has recently been diagnosed with vascular dementia. He went in to a care home on a temporary basis while suitable alternative accommodation was found for him, and after a morning of extreme confusion(caused by a lack of sleep probably due to the new uncomfortable bed) was prescribed Prozac. He went downhill rapidly, not only was his confusion much worse but he started to display extreme muscle spasms and rigidity including lockjaw. Our family insisted he be taken off them and his condition improved rapidly back to the level it was before. He has since moved into sheltered accommodation with assistance as he was deemed to be too "with it" to remain in the care home. However he has now been prescribed 3mg of Excelon daily(at our request as we had been advised that it could halt the decline for a while) plus 75mg of Aspirin and although he isn't experiencing muscle spasms etc, his communication skills which were pretty good before have declined immensely.

He also appears to have lost all sense of logic. He just doesn't understand any more that electrical appliances also have a plug and a switch to make them work. He's convinced when he looks in the mirror that someone else is looking back at him and is quite sure that it is not his own reflection he's seeing. He is also convinced that people on the TV come out of it and sit with him in the room. He cannot sleep at night and is restless to the point of pacing the room like a caged animal. He is also unreasonably needy of my sister and I calling us at all times of the day or night to tell us that he thinks he's dying.

He has also become according to the staff verbally aggressive(a very gentle person ordinarily) and now his accommodation is under serious threat. This is adding to his distress no end. So therefore my question is can Excelon cause these types of behaviours and is it an anti-psychotic? Or do you think it is coincidental and that his vascular dementia would cause these types of behaviours anyway? As a family we can't help but feel that his unusual behaviour is drug related. He has had problems overall for approx 18 months. Any advice or suggestions would be very gratefully received. Thank you. Mrs Kim Avou
Mrs Kim Avou, Aylesbury England

Doctor Barker responds:

It is unlikely that Exelon (also know as rivastigmine) is the cause of your father's difficulties, and no, it isn't an antipsychotic. It is one of the anti-Alzheimer's medications which can sometimes help with confusion, concentration and daily living skills. It was probably prescribed to see if it would help with his confusion. 3mg is a low dose, and the doctors might want to try to increase it. However, there is limited evidence of benefit with these sorts of medications in vascular dementia. People with dementia are often quite sensitive to side effects of medications and if there is no evidence of benefit then it should be withdrawn. As a family member your views should be listened to.

If there is any sudden change in behaviour then medical causes should be explored.

It sounds as though things are getting very difficult for you and your sister. If you haven't had it already, you should ensure that your father is referred to local specialist older peoples mental health services.

Hello, my father was taken into hospital ten days ago after not feeling well in his local pub , he has Alzheimer's and is 81 he lives alone and was on Aricept , he is now on quetiapine and Diclofenal and Lorazepan and Lansopreazale just before I knew your program was on I had decided to tell them to stop giving him any drugs as I have seen a dramatic change in him , if he stops all the drugs and goes back onto Aricept what is likely to be the side effects of the drugs they have given him and how long before they are out of his system .Thanks
D.Baguley, Harrogate

Doctor Barker responds:

You should ask why he was taken off the Aricept, particularly if he had got good benefit from the medication. This medication can sometimes cause increased stomach acid and dicolfenac (a pain killer) can also irritate the stomach lining. The lanzoprazole helps protect the stomach by reducing stomach acid.

Quetiapine is one of the drugs reported on in tonight's programme, which can cause sedation, worsened mobility and worsened confusion and is usually only used for marked aggression or psychotic symptoms (such as delusions and hallucinations).

Ask why the quetiapine was started, how long he will be on it and what the plans are for discharge. If he was managing in his own home he may well have been quite happy there and it might have only the change in environment that has caused difficult behaviours that have been felt to require medication. Ask for an appointment to see the consultant in charge of your fathers care if you are not happy with the response.

Professor Ballard responds:

The pattern, extent and time scale of recovery after stopping a cocktail of sedative drugs can be very variable. If the drugs were prescribed because of aggression or similar problems it is also possible these symptoms could get worse. My usual advice would be to try and look after a person for at least 2 weeks off these types of drugs, and to then make a full assessment of the problems and the possible treatment approaches - including non drug approaches. Regarding aricept, it is very difficult to know whether restarting it would help - although particularly if he experienced a rapid deterioration when it was stopped this may be worth a try.

There is another medication - memantine (ebixir), which is licensed for the treatment of people with moderate to severe Alzheimer's disease, and which can also help symptoms such as irritability and aggression. This treatment is licensed, but not approved by NICE for use on the NHS - so it is not always available, but definitely worth discussing with your father's doctor.

As a care provider I was pleased to see someone taking this matter seriously and I do agree with most of the points raised in this programme. With regard to the gentleman featured in the programme in your professional opinion how many hours of care per day will be sufficient to look after this man without the use of medication?
Murat, Portsmouth, UK

Doctor Barker responds:

By the look of it he will require 24 hour care, but for how many of those hours he would require 1:1 care is very difficult to say with such a snapshot of behaviour.

Usually care routines can be altered to increase the amount of stimulation and meaningful interaction with minimal extra nursing time. Training and supervision of staff is key though.

My father now 79 was officially diagnosed with Alzheimer's just about one year ago. He has been prescribed "Reminyl XL"- (Galantamine XL) 24mg. Does this drug do anything at all to help? One of the recent side effects appears to be severe bowl problems. He is very confused most days about time and money
Mrs. F. Brunton, Kirkliston, West Lothian, Scotland

Doctor Barker responds:

Galantamine is one of the anti-Alzheimer medications that was recommended by NICE as being effective for cognitive function and daily living skills.

These medications do have a range of benefits with some people responding better than others. They are not miracle cures, but often improve the quality of life for people with dementia and their carers.

The commonest side effects are gastrointestinal (reduced appetite, nausea, diarrhoea). If there really hasn't been any sign of benefit and he is getting side effects they benefits may not outweigh the side effects. It is important to report side effects to the doctor prescribing - an alternative could be tried.

My Dad has been on Amisulpiride since Easter this year. 75 morning and night - i.e. a total of 150. His physical health has deteriorated dramatically - he now shuffles about 1/2 inch whereas he was able to walk perfectly. He has the shakes. He has become extremely submissive.

Is any of this due to the Amisulpiride? He has Alzheimer's. Thank you so much for your time.
Mrs Mary Oram, Langford, Bedfordshire, England

Doctor Barker responds:

The symptoms you describe could certainly be due to the medication. You should ask the responsible doctor what the medication is being used for, describe the side effects you have seen, and see if the medication could be reduced or discontinued. If it really is needed (these medications do sometimes have a useful role for extreme behaviour that is risk to self or others) then an alternative could be tried. My concern, and the reason I agreed to help with this programme, is that medication is sometimes used as an alternative to good care, because it is easier and less demanding on staff. If he is in a care home that you are not happy with then consider an alternative - other carers or the local Alzheimer Society are often good places to get good "user" information.

My father-in-law is being treated for Alzheimer's dementia "with a vascular component". He is in Australia though I think the drugs available are the same. He is currently being given haloperidol, to treat alleged psychotic behaviour. My reading of resources on the internet, although I am not an expert, suggests that haloperidol is less damaging than quetiapine. My question is: is there a study of the effects of haloperidol on patients with dementia, analogous to Professor Ballard's study of the effects of quetiapine. Many thanks if you get a chance to reply to this. David Carter
David Carter, Neston, Cheshire, UK

Doctor Barker responds:

Most doctors who prescribe these newer "atypical" medications such as quetiapine do so because they generally find they have less side effects than the older ones (such as haloperidol). The only research I am aware of has suggested that the older ones are certainly no safer than the newer ones. Haloperidol is quite prone to causing tardive dyskinesia in people with dementia, an irreversible movement disorder. All of these medications should be used at the lowest effective dose, the benefits weighed against the side effects and a trial withdrawal attempted intermittently, unless there is evidence of severely risky behaviour prior to the medication being used, in which case caution is required.

Hi. My Mother has been on risperdal for about 8months as high as 2milligrams adn as low as .05. She id suffer delusions and hallucinations and still does but she has started to exhibit most of the side effects in the programme and seems to have deteriorated rather rapidly. I have reduced her dosage to .05 and intend to wean her off as soon as possible. Will she be able to get back to a 'normal' state pre the medication?
asains@ntlworld.com, London

Doctor Barker responds:

You really should discuss your observations with the doctor and alter medication with your doctors knowledge. There always has to be weighing up of benefits and side effects with these medications. If there really are delusions and hallucinations (as opposed to just confusion) that are distressing your mother then it may be that she would get benefit from an alternative. What I wouldn't wan to happen as a result of this programme is for everyone prescribed these medications to be stopped immediately without consideration of what is in the persons best interests. The programme rightly looked at the negatives of over prescribing of these drugs, but sometimes they do have benefits also.

Most of the side effects should lessen with withdrawing the medication.

TEENAGE SEX FOR SALE
I was flattered by it at first cos older boys were interested in you, which at 13 is nice.

SEE ALSO
Please Look After Dad
02 Dec 07 |  Panorama
Transcript: Please Look After Dad
05 Dec 07 |  Panorama

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