The importance of psychological support for people with MND

After her post-doctoral research investigating episodic memory in Alzheimer’s disease, Professor Gould realised that she wanted her work to have a more direct impact on the lives of those who struggle with mental health difficulties. This attracted her to the area of psychological therapies, and she went on to train as a clinical psychologist. She then became interested in the neurodegenerative condition motor neurone disease (MND).

MND is a rare condition that progressively damages parts of the nervous system, leading to muscle wasting and ultimately death. Following diagnosis, people with MND typically survive two to four years, although the course of the disease is variable.

There is currently no cure for MND, but treatment can help reduce the impact of symptoms and extend survival. Professor Gould and her colleagues realised that there was a huge unmet need for psychological support among people living with MND, but evidence of the effectiveness of psychological therapies was unfortunately lacking.

Professor Gould has been working to change this. Along with Professor Chris McDermott from the University of Sheffield, she recently led the largest study of its kind to look at the impact of a psychological intervention on quality of life for patients with MND. The trial involved 191 participants across 16 MND Care Centres and clinics in the UK, and was funded by the NIHR and Motor Neurone Disease Association. The results showed strong evidence that a psychological therapy called Acceptance and Commitment Therapy (ACT) is particularly helpful for maintaining or improving quality of life in people living with the condition.

ACT combines aspects of cognitive behavioural therapy (CBT) with acceptance and mindfulness-based strategies. It aims to help people clarify what’s important and matters to them, and learn skills for handling difficult thoughts, emotions and situations that get in the way of this. Professor Gould explains that ACT differs from standard CBT as it focuses on changing how we relate to our thoughts and our feelings rather than trying to change the thoughts and the feelings themselves. This can help people live their lives in ways that are meaningful to them, alongside whatever difficulties they might be experiencing that are outside of their control.

“We did this study because helping people to manage their quality of life and how they feel is really important in MND, but we didn’t know how best to do this,” she says. “ACT is a form of psychological therapy that has been found to be helpful in other conditions, including chronic pain and muscle disorders, but it hadn’t been tested in MND.”

Professor Gould hopes that having evidence to show the benefits of ACT means that people living with MND will start to gain better access to psychological therapies. The problem, she says, is that psychologists are not routinely part of the MND multidisciplinary team, which means that accessing psychological support is often difficult.

“There are lots of people involved in MND clinics – neurologists, speech and language therapists, dieticians, nurses, physiotherapists, assistive technology experts etc – but often not psychologists,” she says. “Understandably, there tends to be more of a focus on the physical rather than the psychological aspects of MND.”

Professor Gould hopes that things will soon improve though. NICE are currently reviewing the findings from Professor Gould and Professor McDermott’s trial, which could lead to a change to the clinical guidelines for MND. Professor Gould hopes that psychological therapy will be provided as part of the standard care package for people living with the condition: “Psychological therapies will not be for everybody, but we should be able to offer this type of support for the people who want it.”

Professor Gould highlights two main challenges in developing psychological therapies for people living with MND. The first is ensuring that the therapy is tailored to meet the psychological, physical, cognitive and communicative needs of the condition. The second is ensuring that the therapy is flexible enough to vary according to a person’s individual needs and preferences.

Professor Gould explains that this is particularly important in conditions like MND where there is often a lot of variability in symptoms: “Different types of MND present differently and have different trajectories, and people have their own personal preferences. So any therapy needs to be able to accommodate all these individual differences.”

Professor Gould is now leading a trial of ACT for older people with treatment-resistant generalised anxiety disorder. She is also working with UCL colleagues on adapting ACT for people living with Parkinson’s disease and anxiety, as well for carers of people living with neurodegenerative conditions. Given the immense strain that these types of illnesses place on both patients and their caregivers, she believes that there is an urgent need to address the gap in care and help improve people’s lives.

Related

• Professor Rebecca Gould’s academic profile
• Talk therapy can improve quality of life for people with MND
• UCL Division of Psychiatry