Personality changes and brain tumours
Our brains control every aspect of who we are, what we think and feel. Brain tumours can sometimes cause personality changes such as confusion, anxiety or mood swings.
This happens most often when the tumour is in the frontal lobe of the brain but can occur with any brain tumour and can also be due to the impact of diagnosis and treatment.
What sort of personality changes can brain tumour cause?
If you have or had a brain tumour, you may experience changes to aspects of your personality. Personality changes may include:
- irritability or aggression
- disinhibition - loss of inhibitions or restraints and behaving in socially or culturally unacceptable ways
- confusion and forgetfulness
- apathy (lack of interest and motivation)
- depression and blunting/flattening of emotion
- mood swings (known as 'emotional lability')
- difficulty planning and organising
- difficulty identifying emotions in yourself and others.
Read more about other brain tumour side effects.
Why can brain tumours cause personality changes?
There could be several reasons why you or your loved one may experience personality changes, each of which could be interlinked. Knowing that there is a reason for the personality change can feel hugely relieving and can make a big difference in starting to cope emotionally.
As a brain tumour grows, it puts pressure on surrounding tissue affecting the function, process or part of the body that is controlled by that area of the brain. Personality changes are most common in people when the tumour is located in their frontal lobe. This is because the frontal lobe is responsible for many functions - it controls your personality and emotions and plays a vital role in problem solving and long-term memory.
Our ability to regulate our behaviour and restrain ourselves is also controlled in the frontal lobe so, if you have a tumour here, you may act in ways that are considered socially inappropriate. This can be very difficult for those around you to understand and can put a strain on personal relationships.
As well as the frontal lobe, personality changes can be caused by a tumour in the pituitary gland. The pituitary gland is not technically part of the brain, but it is located very near to the brainstem.
The pituitary gland secretes hormones, so a tumour here can lead to the over or under production of hormones, affecting some emotions and causing changes in your sex drive. Treatments such as hormone replacement therapy can help to redress this balance, if appropriate.
Another possible reason for personality change is swelling in the brain (known as 'oedema'). This could result from treatments including surgery, radiotherapy and chemotherapy. Personality changes that have occurred as a direct or indirect result of these treatments usually pass gradually as you recover from the treatment.
Large tumours can have a greater effect on personality as they affect a greater area. However, even a small tumour in a key structure of the brain can have a significant impact. A lower grade (1 or 2), slow growing tumour often allows the brain more time to adapt around it, causing less swelling and personality change than a higher grade (3 or 4) tumour, which grows more quickly.
Steroids help to reduce swelling and therefore reduces personality effects, although they can also affect your emotions; you may feel anxious, irritable and emotional and experience mood swings. A small number of people may experience what is referred to as 'steroid' induced psychosis
Personality changes might be experienced as a natural reaction to the diagnosis and treatment. The emotional impact of the diagnosis, undergoing treatment, and the lifestyle changes that are often necessary for a person living with a brain tumour, can affect mood, general persona and can cause a person to become more irritable.
Treatment and frequent journeys to medical appointments, can also dramatically lower energy levels, so someone who was very active before they had a brain tumour may no longer be. Confusion and mood swings can also be the result of medication or combination of medications interacting. It is worth speaking to your doctor if you are experiencing such effects as they may be able to alter your medication.
Tips to cope with personality changes
Talk to others
Many people find just talking to others helpful. This can be useful to patients 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 will be able to refer you to an NHS counsellor or psychologist (if there is one available in your area), or you could find one who practices privately but this may have a cost.
Some people find support through face-to-face groups, telephone support groups and closed Facebook groups. What is important is that you find support in a way that suits you best and which makes you comfortable.
We have four closed Facebook groups which offer a safe online space where people affected by a brain tumour can connect to share experiences, find and give support.
To help cope with personality change, it is always a good idea to speak to your doctor. They will be able to talk through options available to you such as medication, and if appropriate, refer you to a psychologist, who can help to provide strategies and ways of coping with the change.
As outlined, a medication that can be prescribed for swelling are steroids. If appropriate, your doctor may prescribe other medications, such as tranquilisers, to help with anxiety or aggression, or anti-depressants if you are experiencing depression.
Monitoring others' reactions
If you are living with a brain tumour and are aware, or are concerned that you may be acting inappropriately, you may find it helpful to pay close attention to others' reactions and responses. This may help to give you an idea of whether the way you are acting is 'normal'. If those around you tell you that you are acting inappropriately, try not to take offence -they are most likely trying to be helpful.
You could ask a close family member or friend to give you guidance on what is appropriate behaviour in situations.
How to help a loved one
It can be very upsetting to see personality changes in someone you love. Some people say, for example, that the person they married is not the same person 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:
- break down tasks into small chunks - for example, rather than asking your loved one to clean the kitchen, break this down in to tasks such as 'please put dirty dishes in dishwasher, clean the floor' etc
- minimise distractions to help with confusion - for example, turn off background noise and avoid busy places which could be overwhelming
- 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 orient the person by identifying yourself and stating your intentions
- to help with aggression, there may be something particular that is bothering the person, for example the person may be tired or need to use the bathroom. A good strategy is to pay attention to what triggers the person's agitation and try to resolve the problem before it escalates
- if your loved one is showing inappropriate behaviour, try not to show embarrassment or disgust. Instead, let them know that their behaviour is not 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 have an understanding of the reasons behind a person's behaviour then they will be able to support the person or ignore some comments
- try to avoid comparing the person now to the 'person they were before' too much, which can be upsetting for both of you
- try to recognise the change as part of the brain tumour, not the person you love. This can be very difficult, for example, if the person has become irritable and it feels as though they are taking everything out on you.
Frequently asked questions
This varies. Some people are aware of their personality changes, some people aren't, or they may not have full awareness. For example someone may be aware that they are less patient and have a shorter temper than they did before but not be able to link the cause and the effect. Some people are aware they are behaving in an inappropriate manner but will be unable to stop themselves.
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.
This can be a difficult question to answer as it depends on what aspect of your tumour or treatment has caused the personality changes you are experiencing. The extent of personality change will really depend on what is causing it and which area of the brain is affected. Personality changes may be helped by medication or they may fade with time as the effects of treatment have worn off.
If the change is due to the emotional impact of living with a brain tumour, psychological support can help.
If the change is physical in the brain, for example, it is the result of surgery or radiotherapy, the person may not go back to the way they were before. In addition to this, if a person's tumour continues to grow, personality changes may become more pronounced or other changes in the personality may begin to appear.
We know that a brain tumour diagnosis often impacts the wider family. In our 'Losing Myself' report, 2 in 3 said that they had seen a negative impact on their relationship with their partner, while 72% have had physical intimacy affected. Studies show that it is the personality and cognitive effects of brain tumours that place the most strain on relationships, particularly where they cause behaviour change, but that techniques to support caregivers can make a positive difference.
Click is an online resource that's been developed by OnePlusOne to provide general relationship support and help you strengthen your relationships. It features a professional-led listening room, moderated community posts, evidence-based articles, goal-setting, quizzes, and personalised recommendations to help you improve and maintain the quality of your relationships.
Relate are a charity who provide support services to people experiencing relationship problems, this includes counselling for individuals, couples and families.
You can visit the British Association for Counselling and Psychotherapy (BACP) for information about finding a therapist.
The British Psychological Society (BPS) has information about finding a chartered psychologist.
The Brain Tumour Charity are currently undertaking research into how best to support people living with a brain tumour who are affected by personality changes. If you would like to know more, please contact the support team at firstname.lastname@example.org or call 0808 800 0004.
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