MND doesn’t just affect movement – it can also impact thinking and behaviour. But these cognitive changes in MND aren’t the same for everyone. In fact, researchers have found that cognitive and behavioural changes in people with MND are quite varied, or what we call “heterogeneous.”
Research has suggested that:
- Around half of people with MND show normal thinking and behaviour.
- About a third experience some changes in thinking or behaviour, but not severe enough to be identified as frontotemporal dementia (FTD – a type of dementia that mainly affects behaviour and personality).
- And some people have a clear diagnosis of MND-FTD.
A recent focus in research has been on the middle group – the third who don’t have full-blown FTD but also don’t have completely typical thinking and behaviour. These individuals often go unnoticed because their symptoms are subtler than the more obvious signs of FTD.
FTD, especially behavioural change , is quite distinctive.
People with it often show:
- Apathy (lack of motivation)
- Disinhibition (acting impulsively)
- Loss of empathy
- Repetitive behaviours
- Changes in eating habits, like overeating or cravings
But in the mid-range group, the symptoms are less obvious. They might have difficulty with tasks like generating words that start with a certain letter (called “letter fluency”) or show mild issues with language or executive function (skills like planning or problem-solving). In fact, just showing signs of apathy alone can be enough to diagnose behavioural impairment in this group.
The criteria for diagnosing these milder cognitive and behavioural changes were updated in 2016, helping researchers and clinicians better identify and understand this “hidden middle.” By studying this group more closely, we can better support those whose symptoms might otherwise slip under the radar.
Decision making and capacity in MND: What the law says
When it comes to making decisions about care and treatment, a person’s ability to decide for themselves – known as decisional capacity – is really important. In the UK, this is guided by the Mental Capacity Act, and similar laws exist around the world.
The key idea is this: every adult is assumed to have the ability to make their own decisions, unless there’s clear evidence showing otherwise. If they haven’t undergone a proper assessment that proves they lack capacity, they must be treated as being capable of making their own choices.
Another important part of the law says that people should be given as much help as possible to make decisions before anyone decides they can’t. That means supporting someone with MND through the decision-making process – giving them time, clear information, and any communication support they need.
This approach helps protect the rights and dignity of people with MND, ensuring they stay involved in decisions about their care for as long as possible.
Professor Sharon Abrahams (pictured left) and Dr Milena Contreras from the University of Edinburgh have been looking into the use of support strategies to improve mental capacity to make treatment decisions in MND.
Making informed decisions about care in MND: A closer look at consent and capacity
When someone is making a decision about their medical care, there are a few key steps involved. First, they need to understand the information given to them. Then, they have to remember it, think it through, and weigh the pros and cons of their options. Finally, they need to communicate their decision.
But what happens if a person’s ability to think and communicate is affected? To explore this further, Milena and her team studied how people with MND make the decision of whether or not to have a gastrostomy (a feeding tube placed through the stomach). This is an important choice because it can help with nutrition and possibly extend life – but it’s not a simple decision to make.
The researchers wanted to understand how well people with MND could make this decision on their own and with support. They interviewed 56 people with MND and assessed their ability to make the decision using a tool called the MacCAT-T (the MacArthur Competence Assessment Tool for Treatment), which they adapted for MND.
This tool looks at four main areas:
- Understanding – do they know what the procedure is and what the risks and benefits are?
- Appreciation – do they believe the treatment could help them personally?
- Reasoning – can they think through the consequences and how it might affect their life or family?
- Communication – can they express their decision?
Each person was assessed twice: once without support, and once with support – to see if guidance, communication aids, or clearer explanations could help them better engage in the decision-making process. This research helps shed light on an important but often overlooked question: how do we ensure people with MND are supported to make their own medical choices for as long as possible?
Before making a decision, like having a feeding tube fitted, a person with MND will have to read and understand the Patient Information Sheet. The same kind of information sheet is also used if someone takes part in a clinical trial. These documents are often long, detailed and full of medical jargon. Milena wanted to find out if someone with MND was able to understand a Patient Information Sheet about tube feeding effectively.
The 56 participants in the study were given a real information sheet called ‘Making a decision about tube feeding’. They were then assessed using the four areas of the MacCAT-T, and their responses were rated using a scale which scores each area from 0 to 2, with 2 being fully understood, 1 being somewhat unclear and 0 being didn’t understand. They were first assessed without any support.
What did they find?
Out of the 56 people tested without any support:
- 9 had trouble understanding and remembering the information
- 4 had difficulty with reasoning
- 11 struggled with both
- 32 had no problems at all.
That means that nearly half of participants couldn’t fully understand or reason through the decision and would have been considered to not have the capacity to make that decision. It’s important to note that people with frontotemporal dementia (FTD) were not included. This study was focused on those in the ‘middle range’ of cognitive ability, not the most severely affected.
Making medical decisions easier for people with MND: Can better support help?
The researchers decided to test some support strategies to make decision-making easier – especially for those with challenges in thinking and reasoning.
The first thing they did was redesign the information sheet, making it much more user-friendly, including:
- Short paragraphs
- Clear bullet points
- Helpful diagrams
The aim was to make the information easier to read and digest, without overwhelming the person.
A side-by-side comparison table
Milena also created a comparison table to help people think through the pros and cons of having a feeding tube. The table asked key questions like:
- What are the health benefits?
- What are the health risks or complications?
- How will this help with day-to-day life?
- What are the downsides for everyday life?
- How might this affect carers or family – positively or negatively?
For each question, there were two columns – one for choosing a feeding tube and one for not choosing a feeding tube.
This format is similar to tools used to support people with decision-making difficulties with other conditions. It helps people break down big decisions into smaller, more manageable parts.
Milena then walked participants through the questions, one at a time. She helped them think about the answer for each side – choosing the tube vs. not choosing it – so they could weigh up their options clearly and make their decision.
By using these prompts, and offering support throughout the process, there was a significant increase in participant’s understanding, reasoning and overall capacity.
How simple support strategies can help people with MND make important medical decisions
When support tools were used during the decision-making process, there was a significant improvement in how well participants understood and remembered information, as well as in their ability to reason through their options. In addition to the comparison table, the easy-to-read information sheet was left in front of them while they made their decision – so they could refer back to it whenever they needed.
Before support was offered, nearly half of people taking part failed the capacity assessment, meaning they were considered to be unable to fully understand or weigh up the decision about tube feeding. With support:
- Only 2 people has issues with understanding and retention.
- 54 out of 56 people showed no impairment at all.
When the results were looked at further, it was found that the two people who still struggled likely had more serious cognitive issues than originally thought.
Why this matters
This study shows that with the right support, most people with MND can continue to make their own medical decisions. They can understand their options, think them through, and make choices that feel right for them.
That’s really important – because losing the ability to make decisions about your own care can make people feel like they’re being left out of their own lives.
Helping people with MND stay involved in their own care decisions isn’t just possible – it’s necessary. And this research shows that sometimes, all it takes is a clearer form, a little guidance, and the space to really think things through.
