De-mystifying mental capacity

What I want to talk to you about today is mental capacity from my perspective as a neuropsychologist. I want to break down some of the myths that it is overly complex or that you have to be highly specialized to understand it. I want to break it down for you as simply as I can and share some of my experiences. It is an area I have been interested in for quite a long time, and I have written a couple of books on it. My last book is meant to be a dummy's guide that explains the most basic concepts and principles that you can carry around with you.

I am looking forward to questions today from everybody. I would start by saying there is no such thing as a stupid question; every question is relevant. If you think it is stupid, I can guarantee there are probably about 20 other people wanting to ask it as well. Please do ask, and if I cannot answer it, that is fine; I am quite happy to go away and have a look.

I am going to talk about the Act, obviously, because I am trying to demystify it for you, but I am also going to talk about approaches to assessment. How we might go about it, what we might need to keep in mind while we are doing assessments of capacity, and what are some of the factors that are actually quite important for us to consider. I am trying to keep it as straightforward as I can, but also demonstrate how it sometimes feels very complex and very weighty.

Our outline for the webinar is a brief introduction to the Act, which I hope everybody listening knows the basics of. I am going to talk about the importance of being curious in assessments. Alice in Wonderland said curiosity always leads to trouble; actually, in capacity assessments, curiosity is the best position to start with, work through, and end on. Always be curious. What I mean is, think about why you are doing a capacity assessment: what is the purpose of it, who is it for, what is it going to impact, how might it be used, and what are the implications for the person who is being assessed? That position of curiosity is very important, and I would like you to bear that in mind throughout the presentation.

We will cover what we expect of those carrying out the assessment. There are lots of us who do assessments: doctors, psychologists, nurses, speech and language therapists, social workers, occupational therapists, and physiotherapists. Lots of our colleagues, particularly in a healthcare setting, carry out capacity assessments, so we need to think about what the expectations are of us who are doing those assessments.

Then, because this is a Headway webinar and I am a neuropsychologist, I am going to put it in the context of head injury. I will start by saying, if you do not have a head injury, how do we make decisions? How does the intact, normal, and unaffected brain make decisions? Then, I am going to tie it in with what makes it difficult for us to make decisions anyway, regardless of whether or not we have a brain injury. Then, when you put brain injury into that mix, I will discuss how that can affect our decision making. I will also talk about how we can support decision making. If we are trying to assess an individual's capacity to make a decision, how we can offer scaffolding for that and why we should. Finally, I will discuss what happens when we get to the point where the outcome of the assessment is that the person lacks capacity for the decision.

To begin with the Act, it was designed to protect people who had issues with an impairment to mind or brain, so they could still make decisions wherever possible, but where they were not able to, to put protections in place so that their autonomy was upheld. Prior to this, all it needed to assume somebody lacked capacity was a medical diagnosis, and then it would be assumed that you automatically lacked capacity. This Act was very welcome when it came along because it said we should not make assumptions like that. I often think I have worked in brain injury my whole career, and I come across people who, in a split second, have their lives changed and they lose autonomy. If that was me, I would want somebody to fight for my autonomy, and that is always in the back of my mind when I am doing assessments.

The Act focuses on the person making a specific decision at a specific point in time. That is not strictly true because I think since the Act has come in, case law has looked at what are called performative decisions. We do sometimes make one-off decisions, but particularly with reference to finances and managing our day-to-day affairs, we often make chains of decisions which have implications. Even though the Act says the assessment is for a specific decision, sometimes we look at performative decisions where every decision starts a chain reaction for other decisions and implications. The other thing to remember is that capacity assessments are legal, not clinical; clinicians and social workers get asked to do them, but it is a legal decision, and ultimately it is for the court to decide. The Act I am talking about applies to England and Wales.

There are five principles that underpin this Act that you must remember at all times. The most important one is the presumption of capacity. Your starting point is that you assume capacity, and you only reject that assumption when you have hard evidence that cannot be ignored. Justice Hayden has stated you only arrive at a contrary conclusion when the evidence absolutely demands it. There has been a quiet revolution in judgments that the Court of Protection has consistently made, moving away from being paternalistic and protectionist to needing to prove why a person's capacity should be withdrawn. This for me is the absolute touchstone of all assessments.

The second principle is that the person has a right to be supported to make decisions. They have the right to make unwise, daft, and silly decisions. If it is decided that the person lacks capacity for the decision, anything you do to replace their decision-making has to be in their best interests, and any act you do on their behalf has to be the least restrictive possible. You can see all the way through this that the person is protected, the decision-making is protected, and autonomy is protected.

The actual test of mental capacity has switched in the last year. We now start with a functional test, which has four parts. First, can the person understand the important bits of information? Second, can the person hold on to that information for long enough to use it to make a decision? They can be prompted verbally, in writing, or with visual cues; there are no rules about that. It is not a test of memory; it is a test of their ability to hold on to it long enough to inform the decision. Third, can the person engage with the information? Can they mentally juggle it, have the flexibility to look at it from different angles, weigh it, and think about implications? This is where neuropsychology brings a special dimension. Fourth, once the person has made the decision, can they communicate that by whatever means? If the functional test applies, then you have to look at the diagnostic test: does the person have an impairment of their mind or brain? Is the impairment temporary or permanent? Are they acutely unwell? Most importantly, you need to join the dots: is the difficulty making the decision happening because of the impairment of mind or brain? That is called a causative nexus.

In terms of being curious, you need to decide at the outset what you are assessing, why you are assessing it, what is the threshold, what might the outcome be, and what might the implications be. Look for evidence from different sources: the person's own voice is critical, but also family, friends, partners, professional carers, and health professionals. Look for patterns of behavior over time. Are they engaging in support? Are they complying with medication? What is the evidence of difficulty? You need a picture of strengths and weaknesses, but most importantly, you need to look at what the person actually does in practice, not just what they say. The NICE guidance says you need to observe the person to see how they are functioning. You are not just measuring intention, but actual ability.

There is no one-size-fits-all approach to assessment. You have to listen to the person, observe their body language, and consider cultural and contextual issues. Are they suggestible? Sometimes the way you frame a question can determine the answer you get. It is also important to know what medicines people are taking, as they can affect judgment. Be absolutely transparent about what you asked, who you asked, how you asked, and what answer you got. Do not mix up your assessment with your outcome. Sometimes an assessment becomes therapeutic in itself, and I might do an intervention to help put scaffolding in place to bring them to the point where they regain capacity.

Regarding the brain, decision-making works like a seesaw. If you are tired, you might make decisions more quickly; if you are supported and have time, you can be more reflective. We have three areas of the front of the brain involved in decision-making: the impulsive side, the pause button or cerebral break, and the middle part that connects to previous experience and consequences. This is a dynamic system. When you have a brain injury, frontal brain systems are always affected, which can interrupt this system. We know this makes processing slower, so we give extra time. Distractibility might be an issue, so we limit distractions. The person might struggle to take on board new information, so we provide it in different ways. Fatigue is a big issue, so we do not assess when they are tired. Sometimes, we can act as their pause button.

However, sometimes there is a disconnect between knowing and doing, known as the frontal lobe paradox. The person can talk the talk, telling you what they need to do, but they cannot convert that into action. This makes the person vulnerable. In the code of practice, it acknowledges that sometimes people can understand, but something stops them from using or weighing that information. There is a difference between making an unwise decision when you do not have a brain injury versus when you do. For someone without a brain injury, this is cognitive dissonance—we know something is bad for us, like smoking, but we decide to do it anyway. For someone with a brain injury, it is a frontal lobe paradox where they cannot connect the dots to see the consequences.

I presented two cases to illustrate this. The first was a man with alcohol-related brain damage who was being assessed on his ability to manage medication. Despite a nine-month plan with simplified charts and environmental prompts, he had dangerous medication errors. He was incredibly plausible and articulate, but he had an absolute lack of insight and could not see the risks. The second was a young man with a severe brain injury who was preparing for a simple surgery. He agreed to the protocol, but he lacked the ability to translate that knowledge into action and ate a muffin before the surgery, which had to be rescheduled.

In summary, the mental capacity Act has a core assumption that everyone has capacity. Please be curious, look at patterns of behavior, be supportive, and remember that an assessment should be a conversation. If possible, put scaffolding in place and postpone assessments until someone might be able to get over the line. Be mindful of the disconnect between knowing and doing, be transparent, and be sensitive to the person as if it were yourself being assessed.