A common side-effect of a brain tumour is speech problems and difficulty with cognition (the mental process involved in knowing, learning, and understanding things). We understand that whether you’re the person affected, or a carer, friend or family member, this can be frustrating, upsetting and isolating. But we’re here with you at every step of a diagnosis to help you during this difficult time.
Something to remember
Where communication problems are more severe, families can feel isolated as they cannot discuss the day-to-day things, make joint decisions or express their feelings as easily together.
Verbal communication is only part of communication. Non-verbal communication such as facial expression, tone of voice and touch can help people communicate with family and friends.
It’s also important to remember that communication is a partnership between people, so both parties take some responsibility for finding a successful way to communicate.
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.
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.”
Top tips for helping someone with speech and cognition problems
Ensuring the radio or TV aren’t loud can help both the speaker to better articulate what they want to say and understand what you say. But it can help the listener to focus and hear what the speaker is saying too.
Break things down
Using shorter, less complicated sentences and stressing the key words in the sentence can help the person better hear and understand you. For instance, instead of saying ‘I was thinking maybe you’d like to go out for something to eat tonight? Where should we go?’ you might say ‘Shall we eat out? Italian or Chinese?’
Use non-verbal communication
If a person is struggling to understand what is said, this may be helped by using pictures, facial expression, tone of voice, gesture or writing to support what you’re saying.
Ask what kind of help they would like
It’s useful if families and friends can agree with the person how much help he or she wants. Some people like help at appointments but not at home. Others like help when they’re tired. Some don’t like others ‘talking for them’. If you’re not sure and see someone struggling, ask if they would like help.
Talking around (or circumlocution) is when someone describes what they’re trying to remember to help themselves, or someone else, recall the word. For instance, if you know they want to ask about steroid tablets but can’t get the word out you could say ‘you wanted to ask about the tablet. It’s the little blue one you take. You take 4 mg a day’ and see if this helps.
Use sound cues
Another technique is using a ‘sound cue’ by giving the first sounds of the word. For example if the cue above didn’t help you could say ‘you wanted to ask about your ster…’. Although you know the answer, it gives the person a chance to say it for themselves.
Give them options
You can also try offering two options, for instance ‘did you want to ask about your radiotherapy or your steroids?’ The person may then find it easier to recall the word once they’ve heard it.
Encourage them to be aware
It can help to encourage the person speaking to monitor their speech, and be aware of it, as it might vary during the day, with good and less good times.
Ask for the topic
Asking the person to give you a topic first to narrow down the conversation can help you understand what they want to say.
If you missed the conversation starting say so. Be honest and say ‘I’m sorry I wasn’t paying attention then’. Or, if you haven’t understood something, let them know. Pretending can make them feel frustrated and you might miss something important too.
Repeat what you did hear
Repeating back what you did understand means the person doesn’t have to repeat the whole sentence again, which can be frustrating and tiring.
Don’t anticipate a problem
Often people feel they can’t find the right word even though it’s a familiar word. But anticipating the problem can increase the stress a person feels and make it more difficult for them to recall.
Speak at the same volume
Don’t be tempted to speak more loudly, remember the person doesn’t have a problem with their hearing.
Rephrase what you’ve said
If they haven’t understood you, try rephrasing rather than repeating.
Join our carer’s community online
Our closed Facebook group is a safe and secure space to connect with other carers and share your experiences.