“It’s a delicate dance” – the impact of caring for someone with a lower-grade glioma

We fund The Ways Ahead project which focusses on understanding the impacts of a lower-grade glioma diagnosis. The project aims to address the gaps in knowledge and care to improve people’s quality of life.

The research team at the University of Newcastle how informal caregivers experience life after their loved one’s diagnosis. This work aimed to improve understanding of how caregivers can be better supported.

Research published last month highlighted the key themes at emerge when speaking to informal caregivers on how they can provide support to someone diagnosed with a lower-grade glioma. Highlighted below are some of these themes.

Being a “Carer”

Pretty much overnight, our relationship had to change, where it went from a partnership to me being a carer.

Many of the 19 people who were interviewed reported a change in their relationship dynamic. This involved taking on a greater share of the responsibilities around the home.

Adjusting for Cognitive Difficulties

We have index cards all around our house, or just little visual prompts to remind him to do things, like ‘Don’t forget to turn this off’, ‘Take the plug out’, ‘Check your pockets’, ‘Your keys are on the hook’.

This theme addressed memory issues, communication and carrying out daily tasks and planning. Most of those interviewed spoke about using prompts and reminders. However for issues such as taking medication, caregivers reported taking more control to ensure that their loved ones were getting their medication at the right time. This was particularly important for seizure treatment. Caregivers also expressed the need to be the key decision makers and provide reassurance to their loved one.

Emotional Protection

They need to be understood and really listened to and heard to make them feel not less of a person…I think that’s the most important thing, that dignity and self-esteem, about being able to preserve that.

Most people interviewed said they try to protect their love one’s emotional wellbeing, especially with regards to supporting their mental health and coping with their diagnosis. Many do this by being there when needed and also by ensuring their loved one still does activities they enjoy. People expressed worries about over fussing and trying to make sure their loved one did not feel like “less of a person” after their diagnosis. Some of the caregivers expressed their concerns about showing negative emotions or feeling like they were putting pressure on the person they were caring for, which can be difficult sometimes.

Healthcare Advocacy

I did everything. I went on courses. I read about organic food. I went on brain tumour conferences. I just wanted to know everything

As an informal caregiver, helping to advocate for your loved one’s health and offering them support is important, especially at the start of their diagnosis. This can take several forms, and those interviewed reported attending appointments, seeking for the best care and taking on the responsibility of learning all they could about brain tumours. Some caregivers said they felt the need to take control of appointments to ensure follow-ups were scheduled and their loved one received the help they needed, for example from physiotherapists or counsellors.

Maintaining Independence

It’s a delicate dance, it’s about me not doing too much for her. It’s about communicating and saying, ‘I’m going to put the laundry in unless you would like to do that today?

The majority of caregivers reported their concerns over giving the right level of care to their loved one. They want to give enough support but without taking away any independence. A common theme was the importance of taking the lead from their loved one, but they all wanted to give the best care possible and balancing that can be difficult. Many of the people interviewed said they take on some of the jobs around the house to ensure their loved one has the energy to do more enjoyable things. But knowing when to “take a back seat” was also important.

What support is currently available?

At The Brain Tumour Charity, we know that a brain tumour diagnosis impacts so many aspects of life, and we offer support for those affected. But we also know more needs to be done, which is why we fund research like this.

What support do we hope will come in the future?

Funding Quality of Life research is so important as we need to find the gaps in care and explore ways to improve them. The Ways Ahead project is aiming to understand how much people and their families go through while living with a brain tumour diagnosis and hopes to outline pathways to better care and support for those affected by this devastating disease.

Find out more about this research below.