10 tips on caring for someone with schizophrenia
1. Get the full story on schizophrenia
By learning about your friend or family member’s illness and being part of their support network, you’ll also develop coping strategies, conflict resolution skills, and learn ways of reducing stress. There is a lot of information out there. Make sure the information you access is from credible sources. View our videos from people with schizophrenia and their carers to learn from others. Along with the information on this website, we have provided links for further reading and downloadable booklets.
2. Speak up about strange behaviour or ideas
It’s often only family or close friends who will be aware of strange behaviour or ideas that have been expressed. The person you care for may not always volunteer information during a consultation. Ask to speak to the person doing the evaluation so they can understand what is going on.
3. Prepare for consultations and be aware of the rules
If you are caring for your relative or friend, healthcare professionals can advise and suggest ways to help recovery. But they won’t be able to release private or confidential information.
While this can be frustrating, there is a good reason for it. It’s a part of building the trust relationship between the person with schizophrenia and their psychiatrist that helps get the person you care about back on track. While healthcare professionals can’t share information about your family member or friend with you, the information you share with them can be extremely helpful.
Establishing good communication with the treatment team is important. As well as providing support for the person with schizophrenia, it can make you feel more supported. It means you have someone to contact when you have questions or in case of an emergency.
It’s a good idea to go to an appointment prepared. Write down questions in advance and take a pen and paper to write down the answers given to you.
4. Get support where there is resistance to treatment
Share your concerns with the caseworker and psychiatrist. They’ve had to deal with this over and over again. They can share the approaches that have helped overcome objections for others they’ve helped.
5. Make sure all treatment options for schizophrenia are discussed and there is alignment between patient and psychiatrist
Many patients feel they don’t get the full story on treatment options. Daily oral antipsychotic medications (tablets and wafers) are most often discussed, followed by psychological therapies. Sometimes long-acting antipsychotic medications are not even a part of the conversation, particularly if the psychiatrist thinks the person won’t want an injection.
6. Help ensure on-going compliance with treatment
Compliance with treatment is a big challenge. A recent report showed that only one third of people with schizophrenia always remembered to take their medication. After they get over the initial hurdle of resisting treatment, non-compliance is on the most part unintentional. Carers often need to remind the person they are caring for about treatment daily or at least weekly. Helping to overcome this may require going back and looking at other treatment options for schizophrenia again.
7. How to react to bizarre statements or beliefs
A person suffering from schizophrenia may have bizarre beliefs, and be experiencing paranoia and/or hallucinations. Don’t challenge their beliefs by saying what they are experiencing is not real. It is real to them. But let them know you don’t agree with their conclusions, that you see things differently. Then move the conversation on to another topic.
8. Keep a record
It can be helpful to keep a record of schizophrenia symptoms, medications (including doses) that have been taken, compliance and the effects treatments have had (good, and also any problems), along with any changes in mood and behaviour. This way you will be have a record that you can share with the caseworker or psychiatrist. This could be useful as it may help identify early signs of relapse. It can also be an encouraging record of progress that has been made.
9. Help the person you care about set attainable goals
It is a good idea to encourage the person you’re caring for to work towards goals. But it is important to make sure the goals set are attainable. A patient who is pressured or repeatedly criticised by others could experience stress. This may lead to worsening of schizophrenia symptoms. Like everyone, people with schizophrenia like positive feedback. Focusing on what they are doing well is perhaps more effective in the long run than criticism.
10. Don’t give up
Looking after someone with schizophrenia can be challenging. Don’t give up. Your role is so important. It’s also reassuring to know that development of new medications and psychosocial therapies is on going.
Caring for yourself and your family
Psychosis is an illness that not only affects people who have it; it also affects their family, friends and others in their social network.
Here are some tips or suggestions for things you can do to help
- Watch for worsening of symptoms of schizophrenia and share any concerns with the treatment team
- Keep in contact with doctors, caseworkers and other friends and family in the support circle
- Help maintain a daily routine at home, work or socially
- Have conversations with other family members and friends about working together to provide support for the person you’re caring for
- Don’t forget about the rest of the family, they need your support too
- Organise family counselling if needed
- Make sure you get periods of respite – where people offer to help accept, and organise formal carer respite if you feel you are not coping - Commonwealth Carer Respite Centres can be contacted on 1800 059 059
- Make sure the family member or friend you’re caring for is taking their medication
- Be patient, your friend or family member has to come to terms with their illness, as do you, your family and friends
Checklist for carers
- Antipsychotic medication is strongly recommended
- Make sure all treatment options for schizophrenia are discussed – daily oral (tablet, solution or dissolving wafer), long-acting therapies (an injection every two, three or four weeks) psychological and psychosocial therapies
- Be open to other treatments in addition to current medication where required
- Look into psychoeducation for individuals
- Get advice on collaboration and education for families and carers
- Look into individual cognitive therapy and/or group therapy
- Be aware of how to access crisis support – it’s available 24 hours a day
- Be aware of case management and the other agencies that can help
- Know that you can get assistance in regards to accommodation and vocational support for your family member or friend if needed
- If you are a fulltime carer looking after your family member or friend at home you may be eligible for a carer allowance
Make sure there is a focus on the future, with a plan of how to get there. Case management should be positive and pro-active. If it isn’t, talk to someone about it and request that this be addressed.