In this article Jason shares his experience managing behavioural change. The article also shares information about potential causes and possible signs of behaviour change, and the support available.
*This article contains reference to suicide which some readers may find distressing. If this article causes distress contact Lifeline on 13 11 14.
Picture of Jason and his puppy Floyd.
Jason’s Story
I once was a very angry man. My mood would swing from happy go lucky to extreme anger in the blink of an eye. I had no control over my behaviour. These outbursts lasted for a few minutes to a few hours.
My family was walking on eggshells around me, yet trying so hard to support me even though I was nasty to them.
The catalyst event went on for over 24 hours. That day, I considered suicide.
I voluntarily admitted myself into the mental health ward at my local hospital. Once the MND Clinic palliative doctor knew I was at the hospital he came to visit me. He recognised that I was in the wrong place. At this stage I was 4 years into my diagnosis and wasn’t taking any medication.
The doctor explained that my muscles were wasting away and that my frustration and anger was actually pain and anxiety. He prescribed me medication and organised my discharge. I spent 4 days on that ward. By the time I got home the medication was already working. In conjunction with talking to the clinic social worker, within a month I was a different man.
I now have regular contact with the MND Clinic including the palliative care team. They keep an eye on my symptoms and tweak my meds when required. I really appreciate the multidisciplinary approach that the clinic offers. This ensures that all the health professionals I speak to are on the same page, focusing on what’s best for MY needs.
What are possible causes of behavioural change?
Behavioural change can look different from person to person and can occur for a number of reasons. Understanding, recognising and responding to change is important to accessing the right support.
Behavioural change can occur when a person is struggling to manage strong emotions. Common emotions that can be difficult to manage include anger, resentment, fear and frustration. These emotions can impact a person’s ability to function day-to-day and are usually present at the point of diagnosis and can affect people at different times throughout their illness.
Changes in behaviour may also be caused by other factors, including medication side effects, fatigue, pain, discomfort, anxiety and depression.
Changes in the frontal and temporal lobes of the brain, as a direct result of MND, can also cause behaviour change. This impacts around 50% of people with MND and is known to cause changes to cognition, thinking as well as behaviour. Most people will experience mild changes, with around 5-15% experiencing significant changes and receiving a diagnosis of motor neurone disease with frontotemporal dementia or MND FTD. Not everyone with cognitive change will go on to develop dementia.
What are the possible signs of cognitive and behavioural change?
Changes to cognition relates to intellectual abilities and thinking skills, and may include:
- Difficulty paying attention and concentrating.
- Changes in memory and the ability to recall information.
- Changes in the ability to learn new things, like a new driving route or cooking recipe.
- Difficultly adapting to change in routine.
- Changes in social cognition skills and difficulty with emotional regulation or interacting in a social environment.
Changes in behaviour can be different for each person with MND, and can include:
- Feeling apathetic or losing interest in daily tasks or things otherwise enjoyed.
- Being impulsive or adopting repetitive behaviours.
- Struggling to manage anger and irritability.
- Difficulty responding to emotional cues.
- Difficulty making social judgements, such as saying inappropriate things during social events.
- Changes to food preferences, like eating in a particular way or only eating one type of food.
Sometimes changes in cognition can cause changes to language and speech, including:
- Difficulty finding the right word to say.
- Requiring more effort and time to speak.
- Unusual speech patterns, using odd words or repeating words.
- Difficulty naming objects.
Who can support?
Assessing support early and undertaking regular reviews by a multidisciplinary care team is important. Multidisciplinary care is a term used to describe a range of health professionals from different disciplines who work together. Members of the multidisciplinary care team may include your GP, neurologist, palliative care team, allied health professionals and MND Clinic where there is one available in your area.
If you have noticed any of the above changes, or different changes that are not listed and which feel out of character for you, speak with your multidisciplinary care team. The health professional team will work to understand the cause of the change and implement appropriate strategies to manage the symptoms.
Emotional and psychological distress
Regular access to counselling and psychology can support with managing emotional and psychological distress. Mindfulness strategies and other psychological wellbeing techniques can be recommended. Medications and other interventions may also be explored.
A recent study has found that acceptance of difficult feelings and thoughts through a type of psychological therapy that uses mindfulness-based strategies, alongside usual care approaches, can improve quality of life for people with MND. The new therapy has found positive results when strategies are developed that support the person with MND to take part in activities that are meaningful and important to them, potentially improving psychological wellbeing and supporting the person to manage difficult emotions.
Pain and discomfort
An occupational therapist and physiotherapist can recommend strategies to respond to pain. Equipment, positioning recommendations, passive exercise programs and pressure care techniques may help reduce pain and discomfort.
Cognitive change
Clinical neuropsychologists and neurologists can assess changes in cognition and behaviour. They will investigate the reason for the changes, including if there are other factors like anxiety or pain which are contributing to changes in behaviour.
Strategies to respond to cognitive and behavioural change that has come about due to changes in the frontal and temporal lobes of the brain may include environmental adjustments, simplifying communication, keeping a routine, using aids and technology to support memory, amongst others.
Key take aways
Some key take aways from this article are:
- Cognitive and behavioural change is experienced by around 50% of people living with MND.
- A small number of people with cognitive change will develop dementia.
- A person with MND may experience changes to their behaviour for a number of reasons.
- Understanding, recognising and responding to change is important.
- The possible signs of cognitive and behaviour change are individual. If you have noticed anything out of character, seek support.
- There are a range of different strategies that can be used to manage cognitive and behavioural change.
- There is support available!
Further reading
- MND Aware Living with MND - Aspects of care - Page 42 – Cognition (mndnsw.org.au)
- Mental Health & Motor Neurone Disease | MND Australia | MND AustraliaCognitive and behaviour change in MND (mndnsw.org.au)
- Managing Daily with Motor Neurone Disease | MND Australia | MND Australia
- Motor Neurone Disease & Pain | MND Australia | MND Australia
- MND Factsheet: Cognitive & Behaviour Change | MND Australia | MND Australia
- Motor Neurone Disease (MND) Clinics in Australia | MND Australia
Crisis support
If you are experiencing mental health crisis, contact:
- LifeLine: 13 11 14
- Beyond Blue: 1300 224 636
- Emergency Ambulance: 000
Thank you, Jason, for sharing your story to raise awareness about behaviour change and the benefits of accessing support.
If you would like to share your MND story, please contact our education team at