Reducing the use of antipsychotic drugs. A guide to the treatment and care of behavioural and psychological symptoms of dementia

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1 Reducing the use of antipsychotic drugs A guide to the treatment and care of behavioural and psychological symptoms of dementia

2 Who is this leaflet for? This leaflet is for people with dementia and their carers who want to know more about behavioural and psychological symptoms of dementia and how they can be prevented and treated. It explains a number of treatment options, including effective methods that can be used before medication is prescribed and questions you can ask the doctor about treatment and care. People with dementia and their carers have the right to be involved in decisions about treatment. This leaflet has been developed in parallel with the Best practice guide for health and social care professionals (see page 26) that provides similar guidance about the treatment and care options for people with dementia who are experiencing behavioural and psychological symptoms. 2

3 Contents Introduction 4 What are behavioural and psychological symptoms of dementia? 5 What causes behavioural and psychological symptoms? 6 What can be done to help prevent behavioural and psychological symptoms? 7 How can behavioural and psychological symptoms be treated? 8 What are antipsychotic drugs? 16 What are the risks and side-effects of antipsychotic drugs? 18 What should happen after a person is prescribed antipsychotic drugs? 19 What should you do if you are worried? 20 Questions you can ask the doctor 21 Key points 25 Further information 26 3

4 Introduction It is very common for people with dementia to experience behavioural and psychological symptoms such as aggression and agitation which can be distressing both to the person themselves and the carer. There are a number of simple treatment and therapy options that can dramatically improve these symptoms without the need for medication. In some cases medication can help improve behavioural and psychological symptoms. Some people may be prescribed antipsychotic drugs (see page 16), which are usually taken in addition to any other medication they might be having (such as Aricept for Alzheimer s disease). While antipsychotic drugs do help some people, they can cause side-effects, particularly when used over a long period of time. In about half of people with dementia these drugs do not work. Research has shown that two thirds of prescriptions for antipsychotic drugs are unnecessary or inappropriate. The Department of Health in England has committed to reduce the use of antipsychotic drugs for people with dementia and similar work is also underway in Wales and Northern Ireland. Alzheimer s Society is working with health and social care professionals to help achieve this. 4

5 What are behavioural and psychological symptoms of dementia? Around 90 per cent of people with dementia experience aggression, agitation and psychosis (delusions and hallucinations). These symptoms are known as behavioural and psychological symptoms of dementia and can be very distressing for the person with dementia, their family and others who may be providing care. 5

6 What causes behavioural and psychological symptoms? These symptoms commonly develop in people as their dementia progresses. They can develop as part of the dementia, or they may be caused by a general health problem, for example, if the person is in pain or discomfort due to hunger, thirst or an infection. Symptoms can also be caused by problems related to the care the person is receiving, or their environment or social interactions. If they are unable to communicate the problem, this can cause behavioural and psychological symptoms. It is therefore very important to treat general health problems and pain, and monitor changes in the person s living environment. It is important to remember that the symptoms are caused by changes in the chemicals in the brain and that the person cannot control these symptoms. They are not behaving badly or to blame for their symptoms. 6

7 What can be done to help prevent behavioural and psychological symptoms? There are some simple guidelines that can reduce the instance of behavioural and psychological symptoms. These are based on the principles of person-centred care (care tailored to the specific person s needs) which carers can offer by: treating the person with dignity and respect understanding their history, lifestyle, culture and preferences, including their likes, dislikes, hobbies and interests looking at situations from the point of view of the person with dementia providing opportunities for the person to have conversations and relationships with other people ensuring the person has the chance to try new things or take part in activities they enjoy. The person with dementia, their carer and/or family should be consulted about the best ways to provide care. 7

8 How can behavioural and psychological symptoms be treated? There are many simple approaches that can help with behavioural and psychological symptoms that do not involve drugs. The suitability and intensity of different types of treatment will depend on how severe the symptoms are. 8

9 Mild or moderate symptoms Assessment of mild or moderate symptoms Symptoms are mild or moderate if they occur only occasionally, are not causing serious distress to the person or putting them (or others) at risk. For most people with mild or moderate symptoms, improvement can be achieved within four weeks without any drug treatment. Before any treatment decisions are made the person s GP should do a medical assessment to see if they can find out whether there are any physical or other health problems that may be causing the behaviour. The GP should also check that the key points of person-centred care (see page 7) have been followed and talk with the carer to see if there is anything in the person s living environment that might have triggered their symptoms. 9

10 Treatment of mild or moderate symptoms Once this assessment is complete the person should be treated through watchful waiting, a period of four weeks when assessment and simple non-drug therapies are used. The key points of watchful waiting are to: involve friends or family by sharing information about the person s likes and dislikes try to include the person s wishes in their care engage in short conversations with the person (just stopping for a 30 second chat can make a big difference) offer soothing and creative therapies such as aromatherapy, massage, grooming (like having their hair brushed or a manicure), warm towels, music and dance. If possible, the GP may follow up after two weeks and again after four weeks before deciding what the best course of action is for the future. 10

11 Care options for treating mild or moderate symptoms Mild or moderate symptoms develop Medical assessment Watchful waiting care plan developed GP reviews after two weeks GP reviews after four weeks Symptoms improve Symptoms get worse Return to person-centred care Move to specific treatments Symptoms stay the same Continue watchful waiting 11

12 Severe symptoms Assessment of severe symptoms Symptoms are severe if they are happening very frequently and causing a great deal of distress and risk to the person and others around them. 12

13 Treatment of severe symptoms There are methods of treating these symptoms without resorting to drugs, although in some cases it can be appropriate to try medication for a short time. Before any treatment begins it is helpful for the doctor to carry out a medical assessment and check that watchful waiting has been tried. They may then decide to try a specific treatment. 13

14 Specific treatment might include: Non-drug specific treatments: these are detailed plans for making sure the person has a chance for daily conversation and activities. Research has shown that just 10 minutes of one-to-one time each day reduces behavioural and psychological symptoms. Sometimes it is appropriate to work with a specialist doctor to design a specific treatment for the person. If all other options have been tried the doctor may prescribe medication. This will usually be an antipsychotic drug called risperidone which will be used for six to 12 weeks. Risperidone is the only antipsychotic drug that is licensed for people with dementia. However, it doesn t work for everyone and the benefits are more limited when used for longer than 12 weeks. Some drugs for depression, epilepsy and sleep problems can also help improve symptoms. Where possible the non-drug options should be tried first. If specific treatments do not work the person may be referred to a specialist doctor who may prescribe further medication. 14

15 Care options for treating severe symptoms Severe symptoms develop Medical assessment Specific treatment plan developed Review after 6 12 weeks Symptoms improve Symptoms get worse Return to watchful waiting Refer to specialist doctor Symptoms stay the same Continue specific treatments 15

16 What are antipsychotic drugs? Antipsychotic drugs are a group of medications that are usually used to treat people with mental health conditions such as schizophrenia. They are sometimes used in people with dementia if they have severe behavioural and psychological symptoms. Antipsychotic drugs help around half of the people with dementia who take them and can be an important part of their treatment. However, they can also cause side-effects especially when used for longer than 12 weeks. Alzheimer s Society would like to see these drugs used only when they are really needed. 16

17 The only antipsychotic drug that is licensed for people with dementia is risperidone. Other antipsychotic drugs include: amisulpride (Solian) aripiprazole (Abilify) chlorpromazine (Largactil) fluphenazine (Modecate) haloperidol (Haldol, Serenace) olanzapine (Zyprexa) promazine (Promazine) quetiapine (Seroquel) sulpiride (Dolmatil, Sulparex, Sulpitil) trifluoperazine (Stelazine) zotepine (Zoleptil) zuclopenthixol (Clopixol). The evidence for the benefit of these drugs is more limited. In particular there is no evidence that quetiapine works in people with dementia. Most of these antipsychotic drugs are not licensed for people with dementia but are still used. This is not illegal. However, if a doctor uses these other antipsychotic drugs they must have a good reason. The doctor may be legally responsible if anything goes wrong. 17

18 What are the risks and side-effects of antipsychotic drugs? Like all drugs, there are risks associated with antipsychotic drugs. Common side-effects include sedation (extreme drowsiness), parkinsonism (shaking and unsteadiness) and a higher risk of infections. Side-effects become more serious when antipsychotic drugs are used in the long term, including blood clots and problems with circulation, stroke, heart problems, worsening of other dementia symptoms, falls and death. Side-effects can usually be managed through careful monitoring during short-term use (up to 12 weeks). Over longer periods of time the risk to the person becomes higher. This is why all prescriptions should be stopped after 12 weeks except in extreme circumstances. 18

19 What should happen after a person is prescribed antipsychotic drugs? Only risperidone (see page 17), has been licensed to treat people with dementia when other non-drug treatments have not helped. Risperidone is licensed for use for periods of up to six weeks, although guidance from the National Institute of Health and Clinical Excellence (NICE) indicates that it should be used for no longer than 12 weeks. Use of antipsychotic drugs should usually be stopped after 12 weeks but there may be extreme cases where they are used for longer periods. This should only happen after the person has been given a full medical assessment and a specialist doctor has been consulted. When prescribing an antipsychotic drug the key guidelines for doctors are: try all alternative treatments first including treatment for pain carry out a full medical assessment involve the person s carer and/or family in the decision carefully monitor the person for side-effects review the prescription after six weeks and stop if necessary do not prescribe antipsychotic drugs for longer than 12 weeks except in extreme circumstances. 19

20 What should you do if you are worried? If you are worried about the use of antipsychotics, there are things you can do. Always remember that you have a right to ask questions and find out more. Where possible and appropriate, people with dementia, their families and carers should be involved in decisions about any medical treatment. In most cases there are effective non-drug approaches for treating behavioural and psychological symptoms through watchful waiting techniques (see page 10). You can ensure this happens by talking with the doctor or care staff. If these approaches have not worked, people can benefit from a six to 12 week course of antipsychotic drugs. You can be involved in these decisions and may find the following questions helpful to guide you through the process. 20

21 Questions you can ask the doctor Questions you can ask about the person s overall treatment and care: Has the person had a medical review recently? Does the person have a care plan? Is it tailored to their wishes and needs? What signs should I be looking out for to help stop their symptoms getting worse? Fact Simple person-centred care can help prevent behavioural and psychological symptoms from happening in the first place Action Ask the doctor if you can work on a care plan together to make sure the person is receiving care that is tailored to them 21

22 Questions you can ask if behavioural and psychological symptoms start: Are there any general health problems that might be causing these symptoms? What about pain? Have you looked at the environment and care the person is receiving? Have there been any changes in these recently? Can a period of watchful waiting be tried (see page 10)? Most symptoms stop after four weeks without drugs. What information do you need from me, as a carer, to help design a care plan based around the person as an individual. Fact Most behavioural and psychological symptoms improve within four weeks of watchful waiting without the need for drugs Action Ask the doctor how the treatment will be tailored specifically to the person s needs your input will be valuable in making sure these treatments are the most effective for the person you care for 22

23 Questions you can ask about non-drug treatments: What non-drug approaches have been tried? Does the person have a care plan based on person-centred care (see page 7)? Can I see a copy of the care plan? Can I add to the care plan? How is the care plan used? Can we use the This is me leaflet to record the person s needs, likes and dislikes (see page 26)? Fact Antipsychotic drugs should only be used when other non-drug approaches have not worked Action If the doctor suggests an antipsychotic drug, ask them about any available alternatives and whether they will be effective 23

24 Questions you can ask about antipsychotic drugs: Is it in the person s best interests to have these drugs? What is the drug being used for? Are the drugs the right way to treat this problem? Did you follow the NICE guidelines to decide that these drugs should be used? Have you seen the Alzheimer s Society Best practice guide for health and social care professionals for managing behavioural and psychological symptoms of dementia? What non-drug treatments have been tried first? What are the benefits, side-effects and risks of the treatment? How long has the person already been on the drug? When will the treatment be reviewed? What monitoring procedures are in place? Who has been involved in the decision to prescribe these drugs? Can we have a meeting to talk about whether this is the right treatment? Fact Antipsychotic drugs only work for half of people with dementia. They cause side-effects which can become serious if used for longer than 12 weeks Action Ask the doctor to review the use of the drugs after six weeks and to stop the drug after 12 weeks 24

25 Key points People with dementia, their carers and/or family should be involved in treatment decisions where possible and appropriate. In many people, behavioural and psychological symptoms improve over four weeks without the need for medication. Antipsychotic drugs should not be used for longer than 12 weeks except in extreme circumstances. 25

26 Further information If you have any questions, or would like to find out more, visit alzheimers.org.uk or phone the Alzheimer s Society National Dementia Helpline on or on in Northern Ireland. Useful publications Optimising treatment and care for people with behavioural and psychological symptoms of dementia: A best practice guide for health and social care professionals helps health and social care professionals to reduce unnecessary prescriptions of antipsychotic drugs through better treatment and care. Available on our website and currently under consultation. This is me provides a snapshot of the person with dementia, their needs, likes and dislikes to help care staff deliver person-centred care. It can also be downloaded from our website at alzheimers.org.uk/thisisme Dementia: drugs used to relieve depression and behavioural symptoms (Factsheet 408) Care on a hospital ward (Factsheet 477) Dealing with aggressive behaviour (Factsheet 509) Unusual behaviour (Factsheet 525) Communicating (Factsheet 500) Selecting a care home (Factsheet 476) To order a free copy phone or 26

27 Alzheimer s Society is working with a number of organisations to improve the quality of life for people living with dementia and their carers. Dementia Action Alliance Dementia Action Alliance is made up of over 40 organisations committed to transforming the quality of life of people living with dementia in the UK and the millions of people who care for them. Royal College of General Practitioners The Royal College of General Practitioners (RCGP) is a membership body of family doctors committed to delivering excellence in general practice and patient care, in the UK and overseas.

28 Alzheimer s Society is the UK s leading support and research charity for people with dementia, their families and carers. We provide information and support to people with any form of dementia and their carers through our publications, National Dementia Helpline, website, and more than 2,000 local services. We campaign for better quality of life for people with dementia and greater understanding of dementia. We also fund an innovative programme of medical and social research into the cause, cure and prevention of dementia and the care people receive. If you have any concerns about Alzheimer s disease or any other form of dementia, visit alzheimers.org.uk or call the Alzheimer s Society National Dementia Helpline on or on in Northern Ireland. (Interpreters are available in any language. Calls may be recorded or monitored for training and evaluation purposes.) Alzheimer s Society Devon House 58 St Katharine s Way London E1W 1LB T F E alzheimers.org.uk Code 864 Alzheimer s Society 2011 Registered charity no A company limited by guarantee and registered in England no Alzheimer s Society operates in England, Wales and Northern Ireland

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