Coping with communication difficulties

Learning new coping strategies can help people living with a brain tumour (and those around them) feel more able to cope and reduce feelings of frustration or isolation.

Tips to improve communication skills

There are some simple changes you can make that may help you if you are experiencing communication problems. 

As communication is a two way process, the way that those around you communicate with you is very important. 

If you are experiencing communication difficulties:

• try to create a relaxed environment – dysphasia often worsens with stress
• reduce background noise and distractions
• consider taking a break if you are tired.

Track your journey with BRIAN

BRIAN’s quality-of-life tracker lets you monitor how you’ve been feeling and better understand your ups and downs. You can then share this with your loved ones and healthcare team to show them how they can best support you.

If someone you care for is experiencing communication difficulties:

• don’t rush your speech – speak clearly and at a steady pace
• give one point at a time rather than all of the information at once
• don’t be tempted to speak more loudly – remember that the person does not have a problem with their hearing
• if the person has not understood you, try rephrasing what you have said
• if the person is having difficulty with a particular word, you could ask them to describe it instead
• use all forms of communication, including mime, gesture, intonation, writing, drawing, and facial expressions. There are also communication boards and other aids that can help
• make giving answers easy. For example, instead of asking “Would you like tea or coffee?” you could ask, “Would you like tea?”
• don’t pretend to understand what the person has said if you do not. They will probably be aware that you are doing this and you could leave them feeling very frustrated
• take care not to talk down to the person with the communication difficulty – the problem is not with their intelligence
• don’t interrupt or fill in words for a person unless they ask you to
• relax and be natural
• consider taking a break if you are both tired.

One key way others can help is by being supportive, and to adapt to the way they communicate in order to facilitate your understanding and self expression. 

Also, many carers have found that it is important not to do too much for their loved one just because it is easier, and to remember that the person with dysphasia is:

• still an intelligent person
• knows what they want to say
• can still make their own decisions.

There are also many organisations that specialise in equipment, or other forms of support, for people with communication difficulties.

Join our community on Facebook

Our closed Facebook groups are a great place to connect with other people affected by a brain tumour and share your experiences.

Online brain tumour support groups

What help is available to help with speech and communication difficulties?

If you have not been referred to a speech and language therapist (SLT), you can ask your health team to be referred.

The SLT will give you a variety of spoken and written tests to assess which sort of communication difficulties you are having and to what degree. These tests may include naming objects, engaging in conversation, telling a story/joke, or writing a shopping list.

They will use various tools and exercises to work with you towards:

• relearning lost or damaged communication skills (if possible)
• making the best use of remaining communication skills
• finding new ways of communicating.

Relationship support

Difficulties communicating 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.

I can’t recommend the Relationship Support Service highly enough to help navigate the tricky ways in which a brain tumour diagnosis can impact on a relationship.

Read Ed's story

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.”

Find out more