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Personality changes can be difficult to manage, especially if you aren't aware that you're acting differently. However, you may find the following strategies helpful in coping with this side-effect.
There are many factors that can contribute to personality changes, from the brain tumour itself or the treatment you're receiving to the stress of life after your diagnosis. Similarly, there are many strategies that help people cope with personality changes and we encourage you to explore different options to find something that works for you.
Personality changes can place a huge amount of stress on even the healthiest relationship. In our Losing Myself report, 2 in 3 people said a brain tumour diagnosis had a negative impact on their relationship with their partner.
By launching our free Relationship Support Service in partnership with Relate, we hope to support couples as they manage the extra strain on a relationship that can be caused by a brain tumour diagnosis.
Ed from Kent was diagnosed with a Grade 4 glioblastoma in June 2018 after he collapsed at work. He and his wife have recently been using the relationship service the Charity offers in partnership with Relate to help support him as a husband and father.
“My wife and I had been together for 10 years when I was diagnosed. Until then, our relationship had been so carefree. From day one, we knew that we had a long-term future together and we had a good grasp of what we both wanted that to look like too. However, my diagnosis threw all that into question overnight. We did still get married just nine months later and we soon welcomed our first child after going through IVF.
“The diagnosis really changed how I viewed myself and how I felt that other people saw me too. All of a sudden, I needed help and support to complete what should be really simple tasks. I thought that I had become a burden – someone who needed caring for – and it really knocked my confidence. This resulted in a total lack of interest in the physical side of a relationship.
“The relationship service with Relate was so empathetic. I quickly built a rapport with a professional ear which gave me the confidence to discuss in detail the emotional and practical barriers which were creating the issues in my relationship. We talked openly and real effort was made to understand my situation, offer practical solutions and also understand that sometimes maybe I didn’t want to talk.
“If someone is looking for practical or emotional relationship advice, I can’t recommend it highly enough to help navigate the tricky ways in which a brain tumour diagnosis can impact on a relationship.”
Many people find just talking to others helpful. This can be useful to people with brain tumours and carers alike. You may wish to share your feelings with close family or friends, or you could seek support from a counsellor.
Your GP may be able to refer you to an NHS counsellor or psychologist (if there’s one available in your area), Psychologists can give you strategies and ways of coping with the changes. Alternatively, you could find one who practises privately, but this will have a cost.
The Brain Tumour Charity runs closed Facebook groups where you can talk to people in a similar situation. We can also point you towards local face-to-face groups.
What’s important is that you find support in a way that suits you best and which makes you comfortable.
To help cope with changes to your personality, it’s always a good idea to speak to your doctor. They will be able to talk through options available to you, such as medication.
Steroids may be prescribed to reduce any swelling around your brain and hopefully minimise the impact on your personality .
If appropriate, your doctor may also prescribe other medications, such as tranquilisers, to help with anxiety or aggression, or anti-depressants if you’re experiencing depression.
It isn't always obvious what is causing changes to your personality. One way to manage the changes is to identify the source of the problem and then develop appropriate coping strategies.
You can get help to establish the source of the personality changes by asking your GP or consultant to refer you to a neuropsychologist for an assessment.
In a neuropsychological assessment, you'll take a series of tests looking at your memory, thinking speed, attention, concentration, language, motor skills and mood. They also assess what are called executive functions, which include planning and organising skills. Information may also be collected from friends and family, as you may be unaware of the severity of the changes to your personality.
The result of the assessment will help the neuropsychologist suggest strategies to help you and your loved ones copes better with the changes - including any therapies that may be beneficial.
Discovering the source of the problem is the first step and a way to evaluate changes in personality is to consult with a neuropsychologist. Neuropsychologists specialise in physical effects of brain disease or injury on mental abilities.
In a neuropsychological assessment, the neuropsychologist conducts a series of tests examining memory, thinking speed, attention, concentration, language, motor skills and mood. They also assess the executive functions which include planning and organising. Information is often collected from friends and families as you may be unaware of the changes to your personality.
The results of the tests help the neuropsychologist decide if there is any need for therapies, medications or strategies to help make adaptions.
If you’re living with a brain tumour and are aware or concerned that you may be acting inappropriately, it can be helpful to pay close attention to others’ reactions and responses to you.
This may help to give you an idea of whether the way you’re acting is acceptable. If those around you tell you that you’re acting inappropriately, try not to take offence - they’re most likely trying to be helpful.
You could ask a close family member or friend to give you feedback and guidance on what is appropriate behaviour in situations.
In some cases, other areas of the brain can develop and take over some of the functions that the damaged area used to control.
This is called plasticity of the brain, but may require particular ‘training’.
You can ask your healthcare team if they think this is possible based on your diagnosis and treatment.
People with a brain tumour often behave differently - due to the tumour pressing on their brain or the emotional effects of diagnosis and treatment. Use BRIAN’s quality-of-life tracker to look for any triggers so you can try to avoid them. Or to see if their behaviour is getting worse, so you can alert their healthcare team.
It can be very upsetting to see personality changes in someone you love. Some people say, for example, that the person they once knew has changed now that they have a brain tumour.
The best way to help will depend on the nature of the personality change and the nature of your relationship, but having patience and understanding can be very supportive.
Below are some other strategies that may be helpful:
Firstly, it’s important to be aware that some people are aware of their personality changes, but some people aren’t.
Or they may not have full awareness. For example, some people may be aware that they’re less patient and have a shorter temper than they did before, but they may not be able to link the cause and the effect.
Others are aware they’re behaving inappropriately, but will be unable to stop themselves.
To help with confusion, it may be useful to minimise distractions. For example, turn off background noise and avoid busy, noisy or crowded places that could be overwhelming for the person.
To help with planning and organising, break down tasks into small chunks. For example, rather than asking your loved one to clean the kitchen, break this down into tasks, such as ‘please put dirty dishes in dishwasher’ or ‘please clean the floor’.
If your loved one is behaving inappropriately, try not to show embarrassment or disgust. Instead, let them know that their behaviour isn’t appropriate, and give them consistent guidance on how to behave.
To help your loved one with inappropriate behaviour, it may be useful to speak about this with other close friends and family. If they understand that the brain tumour is causing this behaviour then they’ll be able to support the person or ignore some comments.
If your loved one is showing signs of aggression, try to create a calm environment or even remove your loved one from stressful situations. Try to remain calm and explain what you’re doing.
Pay attention to what triggers the person’s agitation and try to resolve the problem before it escalates. For example, there may be something in particular that’s bothering the person, such as they may be tired or need to use the bathroom.
Try to recognise the change as part of the brain tumour, not the person you love. Understandably, this can be very difficult if, for example, the person becomes irritable or snappy and it seems as though they’re taking everything out on you.
Try to avoid comparing the person now with the person they were before they were diagnosed with a brain tumour, which can be upsetting for both of you.
Caring for, or living with, someone whose personality has changed can be mentally and physically exhausting. So, make sure you set time aside for yourself to do something you enjoy, like a hobby, or just relax.
And don't be afraid to ask for help if you need time to recharge your batteries.
Making sure you understand and are able to access any support for carers that you may be entitled to is a great way to look after yourself when caring for someone.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
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