Supporting someone who has experienced psychosis

About this page

Supporting someone who has experienced psychosis may at times be difficult and stressful. Your relative or friend may appear to be different, either as a direct result of their symptoms or because of the side effects of their medication. Their behaviour may be unusual, irritating and hard to cope with, or at times unreasonable and perhaps frightening.

This page includes suggestions for supporting someone who has experienced psychosis because of a mental illness like schizophrenia or bipolar disorder, including how to cope with behavior that you might find difficult.

Much of the information is based on a book called 'Living with Mental Illness, A book for relatives and friends', by Elizabeth Kuipers and Paul Bebbington. Professor Kuipers is a researcher and clinical psychologist who works at the Institute of Psychiatry, Psychology & Neuroscience, King's College London. She led the development of mentalhealthcare as a website primarily for family members and friends of people who have experienced psychosis.

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Talking to other people

As a ‘carer’ you may need to give emotional support and offer practical help on a day-to-day basis. Your supporting role may consume your time and be emotionally exhausting. When the person you are supporting first becomes unwell, it may feel as if your world has been turned upside down.

Everyone needs to find their own coping strategies, but it sometimes helps if you talk to other people who have been in a similar situation (researchers estimate just over half of people who have a diagnosis of schizophrenia are in contact with a close relative, for example, and about a third of those relatives are parents). People who have been in a similar situation can understand how you feel and share ideas for dealing with difficulties.

There are many carers' groups up and down the country. Some of them run independently, some of them are run by charities like Rethink Mental Illness, others are supported by local mental health services or by a local authority social services department. Ask a member of the mental health team supporting your relative or friend about carers' groups in your neighbourhood. Your GP may also be able to help. Or you could search the internet for carers' groups in your area.

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Getting information

Many family members and other carers say it is very helpful to find out accurate information about psychosis and the diagnosis a relative or friend has been given, particularly when they first become unwell. This will help you understand more about the way he or she is behaving. This in turn may help you be more tolerant and less likely to feel irritated, angry or stressed, and help you in your caring role.

The National Institute for Health and Care Excellence (NICE) 2014 clinical guideline about the treatment of psychosis and schizophrenia* recommends that mental health professionals give family members and other carers written and verbal information about a diagnosis, about the role of different mental health teams and different services, about recovery and about how to get help in a crisis.

Many family members say they are not given enough information about psychosis and their relative's diagnosis. The content and amount of information family members receive varies across the country. This website, mentalhealthcare.org.uk, was launched specifically to make information about psychosis easily accessible to family members. Information is also available from organisations listed on the Other useful websites page.

If you are in close (daily) contact with and offer support to someone with schizophrenia, you could ask your relative's mental health team to arrange family therapy for psychosis (also known as family intervention for psychosis). Information is a key part of family therapy, which is recommended in the 2014 NICE guideline about psychosis and schizophrenia*. NICE also says family therapy should be considered for people who have a diagnosis of bipolar disorder who are stable and taking medication to help keep them well. However, family therapy is not available everywhere.

*This guideline does not cover psychosis experienced by people who have bipolar disorder, psychotic depression or other conditions that involve the symptoms of psychosis.

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Be involved in planning your relative's care (if they agree)

Studies have shown that family members are better able to support someone who is unwell if they understand not only what the diagnosis means but also how mental health professionals are planning to support and treat their relative.

If your relative agrees, mental health professionals should involve you in assessments and discussions about treatment plans. See the Sharing information with relatives page.

The National Institute for Health and Care Excellence (NICE) 2014 clinical guideline about the treatment of psychosis and schizophrenia* recommends the health and social care professionals supporting your relative should discuss with you your role in their care.

The guideline says the team should offer family members and other carers 'education and support' to help them in your caring role. This might be through family therapy (also known as family intervention) if this is available in your area.

See the Support for family members and other unpaid carers page.

*This guideline does not cover psychosis experienced by people who have bipolar disorder, psychotic depression or other conditions that involve the symptoms of psychosis.

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Looking after yourself

Family members and friends who support someone who has a diagnosis of a mental illness such as schizophrenia often neglect themselves. People sometimes feel guilty about getting on with their own lives and doing things they enjoy when their relative at home is unwell. It is possible to be extremely caring and supportive to your relative while at the same time maintaining your own life. This is good for both you and for the person you are supporting. It enables you to keep some perspective on the problems, and not to feel so overwhelmed.

Supporting someone who has a serious mental illness is not always easy. Maintaining your own interests and having time away will help you to cope more effectively and tolerantly with the symptoms of the illness. This means there will less tension in the house and fewer arguments – a calm and supportive atmosphere will be helpful for everyone and will help your relative recover more quickly and stay well for longer.

When people are very unwell, they may lose the ability to look after themselves properly, but this is usually temporary. It’s understandable that some people feel over-protective and immerse themselves fully in caring, giving up work and outside interests to do so. In the longer term, however, it’s much better for both of you if you do keep as much of your own life intact as possible. If your relative needs a lot of support at a particular time, enlist the help of friends and other family members rather than shoulder more responsibility yourself.

It’s important that you eat well, get enough sleep and exercise, and take care of yourself physically as well as emotionally – by seeing friends and talking to other people who may be able to offer you advice and support.

The National Institute for Health and Care Excellence (NICE) recommends in its 2014 clinical guideline about psychosis and schizophrenia* that mental health professionals should offer to undertake an assessment of a carer's needs and develop a care plan that spells out what support will be offered. The plan should be reviewed once a year – and a copy should be given to a carer's GP as well as the carer. This assessment is in addition to a formal carer's assessment which also focuses on your needs. Your are entitled to have a formal assessment if you look after a relative or friend who cannot manage without your help, offering a 'substantial amount of care on a regular basis.' A formal carer's assessment is carried out by your local authority's social services department, or by an organisation commissioned by the local authority to act on behalf of social services. As a result of the assessment, social services may offer you practical help to support you in your caring role. See the Support for family members and other unpaid carers page.

*This guideline does not cover psychosis experienced by people who have bipolar disorder, psychotic depression or other conditions that involve the symptoms of psychosis.

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Understanding withdrawn behaviour

People who are given a diagnosis of schizophrenia may lose interest in life. They may become withdrawn and shun social contact, or become hard to talk to. They may have no energy and stay in bed for long periods of time. These are all symptoms of the illness – your relative is not behaving in this fashion because they are lazy or unfriendly. It is good to encourage them to contribute to the household, but not to expect too much of them. Don’t demand that tasks are completed instantly, or that they are carried out to your high standards, for example. If your relative doesn’t get round to doing the washing up or whatever you have asked them to do, try not to get cross about it, but ask them again to do it next time, and be pleased when they do.

It’s also good to encourage them to go out, whether it be to the shops, on a family outing, to a day centre or just for a walk. It’s good to include them in family activities, even if they don’t contribute much to the conversation.

People who have had an episode of psychosis may be less communicative than they were before. Their face may also be less mobile and they may seem ‘flat’. They may show less affection for members of the family, and may no longer ask how you are. It may seem they no longer care about you in the same way, and this can be hurtful and confusing, particularly for a partner or a parent. It’s important to remember that these are all symptoms of the illness.

Sometimes, however, your relative may appear to be their old self and then, without any reason or warning, become withdrawn again. The best thing to do is not to push them for an explanation or reason. Ask if they are all right, and if there is anything you can do to help. If not, or if they don’t answer, talk about something else, or leave them alone for a short while.

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Self-neglect

Some people also lose interest in their personal appearance and personal hygiene. Try not to ‘nag’ your relative to wash and change their clothes. Instead, try to talk about it with them, saying why you are worried about it, and then set up a routine of bathing, washing clothes and changing bed linen on a regular and reasonable basis. Your relative may need reminders and practical help with personal care, as sometimes these tasks are difficult for someone feeling upset or preoccupied.

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If your relative is depressed

If your relative or friend becomes depressed, it may help to talk to them and offer sympathy and sensible advice, and to offer practical support on a temporary basis. It’s important not to dismiss people’s fears and worries, but to listen, take them seriously and try to help them put things in perspective.

Activity can improve a depressed mood. Physical exercise, or even just getting out of the house, or up and out of bed and doing small tasks, can all interrupt negative moods and thinking, and make people feel more useful and purposeful. It can be helpful to suggest small amounts of manageable activity, and for your relative or friend to decide for themselves whether this makes them feel a little better.

If a depressed mood continues, encourage your relative or friend to seek help from his or her GP or mental health team. Even if medication is prescribed or talking therapies offered, your relative will still need your help. It is sometimes easier to withdraw emotionally from depressed people, but this can confirm their poor opinion of themselves and make their depression worse.

People who are seriously depressed may need even more support from you. You may need to temporarily take over decision-making and tasks they would normally do for themselves. It’s important not to offer this sort of practical support too quickly, as it may again confirm their own view that they cannot manage, and encourage them to give up on everyday tasks. Talk to your GP or a member of your relative's mental health team to get advice.

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Restlessness, over activity or anxiety

Sometimes people who are experiencing the symptoms of psychosis find it hard to sit still, or go to sleep. They may pace a room and find it hard to relax. Symptoms of this kind almost always go away as people get better, but may be particularly hard to live with. You could encourage your relative to go for a walk or take some exercise. If they are anxious, it’s important to acknowledge how upset they are, and help them to relax and stay calm.

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Food and exercise

You should encourage your relative to eat a sensible, balanced diet and take exercise. Although this can be difficult if someone is experiencing loss of energy and lethargy, antipsychotic medication can make people put on weight (see Antipsychotic medication page) and cause metabolic and heart problems. Weight gain can in turn make physical activity difficult and make people feel under-confident and unhappy. Research has shown that a combination of poor diet, weight gain and lack of physical activity make people who have experienced psychosis more likely to develop type 2 diabetes and cardiovascular diseases such as coronary heart disease and peripheral vascular disease.

Before antipsychotics are prescribed, the 2014 National Institute for Health and Care Excellence (NICE) guideline about psychosis and schizophrenia* recommends mental health professionals check your relative's weight and waist measurement, carry out routine blood tests and take his or her blood pressure and pulse. He or she may also be given an ECG. When medication is first prescribed, your relative's health team should give him or her advice about healthy eating and exercise and monitor their weight for a six-week period. If her or she gains weight, mental health professionals may consider prescribing a different drug.

Your relative or friend should also be given regular physical health care checks by their GP – at least once a year – and be offered treatment for any problems in line with National Institute of Health Care recommendations for that particular condition. See the Physical health page on this website.

*This guideline does not cover psychosis experienced by people who have bipolar disorder, psychotic depression or other conditions that involve the symptoms of psychosis.

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Smoking

The NICE 2014 guideline about treatment for psychosis and schizophrenia* recommends people be offered help to stop smoking.

Health professionals should consider offering nicotine replacement therapy such as patches, gum or spray, or the medication varenicline. People with a diagnosis of schizophrenia may also be offered a medication called bupropion. However, there is a risk that people taking these drugs may experience depression, anxiety and suicidal thoughts. They should therefore be monitored by health professionals, particularly in the two to three weeks when they first start taking them.

You and your relative should discuss with their mental health professional what impact stopping smoking might have on the way antipsychotic drugs (particularly clozapine and olanzapine) are processed in their body, and whether their dose needs to be changed.

*This guideline does not cover psychosis experienced by people who have bipolar disorder, psychotic depression or other conditions that involve the symptoms of psychosis.

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Dealing with delusions

It is unhelpful to argue with someone who is expressing strong beliefs about something that is patently untrue. It’s important to remember what they believe to be true at that particular time is indeed true for them – but is also a symptom of psychosis. Try not to be dismissive of what they say. If you deny the truth of their belief, they may think you are no longer to be trusted. If you agree that what they say is true, however, their conviction may become stronger. The best approach is to agree that your relative believes what he or she says but at the same time make it clear that the experience is not real for you – to sympathise that what they are thinking may be very worrying, for instance, but to say that this has not been your own experience. It is helpful to differentiate between their reality and your reality, without arguing about it (see Paranoia page).

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Embarrassing behaviour

Sometimes people who are experiencing the symptoms of psychosis behave in a way that is embarrassing to you – they may shout, laugh inappropriately, talk loudly to themselves, take their clothes off, or speak in a threatening way.

People may behave this way because they are angry or frightened, or perhaps because they are responding to voices they can hear, or unusual perceptions or thinking. If you get angry or upset, this can make things worse. In this sort of situation, try to stay calm. Remember that your relative or friend is not always like this, and that they are not able to control how they are behaving at that moment. It is the illness that is making him or her behave in this way.

It may be helpful to leave your relative alone for a while until things are calmer. Some people find it useful to wait until an outburst of this kind is over, and then talk about what has happened later on.

It may also be helpful to talk about an embarrassing event afterwards with the whole family, including the person who is unwell. You could try to work out ways of avoiding similar situations in the future and ask your relative if there is anything you can do next time to help or interrupt such behaviour at an early stage.

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Sex, promiscuity and relationships

Sometimes people who have a serious mental illness behave in a promiscuous way and this may be particularly worrying if you are a parent, especially if your adult child is choosing sexual partners whom in the past he or she would have considered unsuitable. Even though you may feel uncomfortable about his or her behaviour, you have to accept that you cannot enforce rules about sex. It is helpful to support someone through these relationships, particularly with regard to safe sex and contraception. Your relative needs to know you still care about them, even though they are behaving in a way that you may not approve of.

Sometimes people who are unwell lose their sexual desire. Some types of antipsychotic medication also impact on people’s sexual interest. This may be particularly difficult for partners to understand and deal with, especially if the person who is unwell has also stopped expressing affection.

Conversely, the manic symptoms of bipolar disorder – when the person can be full of plans and ideas, remain awake for several days and be sexually demanding – can also put a lot of strain on relationships.

Promiscuous behaviour may be an early sign of relapse for people who have a diagnosis of bipolar disorder and you might want to discuss with them if they would like to add it to a relapse prevention plan that they could work out with their mental health team (see People who have experienced psychosis before page).

Nearly all people who are in a relationship with someone who has experienced psychosis feel like ending that relationship at some time. This is a normal reaction. However, the guilt that follows can also feel unbearable. Some couples find that the experience of mental ill health draws them closer together. Other relationships do not survive the demands made by a severe mental illness.

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Alcohol, drugs and medication

Some medication prescribed for the symptoms of psychosis interacts with alcohol and increases its potency. As a result, someone who drinks alcohol while on medication may feel its effects more quickly. Even small amounts of alcohol when combined with medication may make an individual become sleepy, morose, or less in control of strong emotions within a very short time. It may be a good idea to talk about how the results of even moderate drinking can be unpleasant with both the person who is unwell and the whole family. If alcohol becomes a serious problem, talk to your GP or the mental health team involved in your relative’s care.

Researchers have discovered that heavy consumption of drugs, particularly during the teenage years, increases the risk of experiencing psychosis (see Cannabis page). If someone has already experienced psychosis, heavy use of street drugs or alcohol may prompt another episode, or make their symptoms worse.

People who are dependent on alcohol and drugs may need to seek specialist help in addition to the support they are offered for their mental health. Your GP or the mental health team involved in the care of your relative will be able to advise and tell you about specialist help that is available locally (see Psychosis, drugs and alcohol page)

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Violent behaviour

Contrary to common belief, most people who experience psychosis are not violent.

However, when someone does behave in a violent way, it may be directed at a family member, sometimes the person most involved in supporting them.

People may act in a violent way because they are angry, or frightened, or because they think someone is being unreasonable. Sometimes violence is triggered by alcohol, by street drugs, or by lack of sleep. Some people hear voices that tell them to behave violently and feel they have to obey them.

If your relative does behave in a violent way, it is important to talk about it afterwards, when they have calmed down, and to try to find out what prompted this behaviour. Understanding what triggered the behaviour means future acts of violence may be avoided. If a particular topic of discussion made them angry, for example, you can avoid talking about it in future. You should tell your relative you were upset and hurt, and that their behaviour was unacceptable.

If you think your relative may become violent, try to defuse the situation. You could leave them alone. Or you may be able to calm them down, or give them a chance to talk about their anger rather than act on it. Or you may be able to distract them – offer them a walk outside, a cup of coffee or tea, or something to eat, for example, or start talking about something they may be interested in. Be very calm and talk in a quiet voice. Try not to confront or ‘crowd’ them. Don’t get too physically close to them, and move to another part of the room. Try not to show that you are angry or upset.

Even though you may try to prevent violence and become skilful at doing so, there may be times when your strategies are not successful. If your relative does become physically violent, or seriously threatens you with physical violence, you will need to call the police. The police should be able to come at any time of day or night, and are likely to help calm things down.

If your relative behaves in a violent way towards you on a regular basis, and you get to the stage when you are constantly calling the police, it may be that you have to stop living together. You may have to change your locks, or even get a court injunction.

If your relative is violent towards you at any time, you must let the mental health team involved in his or her care know about it, and also tell your GP. Ask the health professional to document when, where and what happened and to note any damage. It is important that the professionals who offer support and care to your relative or friend know the facts, and are in a good position to make informed judgements about any risks, if this happens again.

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Suicide threats

Research has shown that people with a diagnosis of schizophrenia and bipolar disorder are more likely to take their own lives or attempt suicide than other people. People who have bipolar disorder are more likely to kill themselves when they are depressed.

Sometimes people who are unwell believe they are a burden to members of their family, that they have nothing to live for and that their future is bleak.

All threats of suicide should be taken seriously. Sometimes people talk about taking their own lives because they are feeling very distressed. At other times, they seriously mean to kill themselves. Threats of suicide are very upsetting and difficult to deal with, and it may be impossible to work out whether your relative is serious in their intent.

It is not possible to prevent all suicide attempts. If someone is determined to take their own life, they will often be successful even if they are under close surveillance at hospital, or at home.

If your relative threatens suicide, or seem to be more than normally tearful or upset, talk to your GP or a member of the mental health team offering your relative support. If your relative is threatening to take his or her own life imminently or violently – by jumping out of a window, for example, or is harming him or herself – and you are not able to calm them down, call the police or an ambulance. Mental health professionals might suggest intensive home treatment or time in hospital to help reduce the risk of suicide until your relative begins to feel more optimistic.

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Money problems

Money may become a problem when you are supporting a relative who has a diagnosis of a serious mental illness. When people are experiencing the symptoms of psychosis or an episode of mania or depression, they may not feel able to work, and then may find it hard to get, or keep, a job when they begin to feel better. There is still enormous stigma and fear about mental health problems and many employers are reluctant to employ someone who has a diagnosis of severe mental illness such as schizophrenia or bipolar disorder (see Discrimination and stigma page). Your GP or a member of your relative's mental health team might be able to help if he or she wants to find or return to work. In its 2014 guideline about psychosis and schizophrenia*, the National Institute for Health and Care Excellence (NICE) recommends that mental health professionals should help people who are looking for jobs. This help might be in the shape of supported employment programmes, or other occupational or educational activities, including pre-vocational training. See the Employment page.

You may decide to work fewer hours to help care for your relative, particularly when they are very unwell, but it is important to retain your own life and work interests if you can. This includes keeping your own job going if at all feasible.

Your relative may also become unrealistic about money, and find it hard to budget. People with a diagnosis of bipolar disorder may spend large amounts of money while they are having a manic episode, running up huge debts and taking risky decisions that may impact on the family finances. Again, it may be helpful to try to talk about some preventative measures (removing credit cards, for example) with the person when they are not in a manic phase.

It’s important to claim all the benefits and financial support you and your relative are entitled to. Visit the Citizens Advice Bureau Adviceguide, or call Rethink Mental Illness advice and information service (0300 5000 927 – Monday to Friday, 10am to 2pm).

*This guideline does not cover psychosis experienced by people who have bipolar disorder, psychotic depression or other conditions that involve the symptoms of psychosis.

 

 


This page was updated on 3 April 2014 
Links on this page last checked: 21 January 2016
Next links check due: June 2016


Resources

Living with Mental Illness, A book for relatives and friends
by Elizabeth Kuipers and Paul Bebbington
3rd edition published by Souvenir Press, 2005
Amazon


Rethink Mental Illness' advice and information service
The service can be accessed on 0300 5000 927, Monday to Friday from 10am to 2pm. Or you can email advice@rethink.org.


Resources

Caring for Yourself

is a free eight-booklet guide for family members and friends who support someone with a mental health problem. It has been produced by Rethink Mental Illness and the Meriden Family Programme. The guide gives information about mental health problems and suggests strategies to help carers look after themselves. You can download a copy from the Rethink Mental Illness website.