Parliament and the ‘Frontal Lobe Paradox’

The group consisted of Dr Katherine Carpenter, Consultant Clinical Neuropsychologist and chair of the DoN, along with Dr Camilla Herbert, Dr Sam Gilbert, Dr Melanie George, Dr Mark Holloway and Chloe Hayward (who was responsible for convening the meetings).

The group also met separately with Emma Lewell-Buck MP and Baroness Finlay.

What is the Frontal Lobe Paradox and why is it important?

The Frontal Lobe paradox (Walsh, 1985), otherwise known as the 'knowing doing dissociation' (Teuber, 1964) is a fascinating and puzzling phenomenon that can affect anyone who has sustained damage to the frontal lobes of their brain.

This is a huge region, making up a third of the surface area of the brain, which is involved in regulating our thinking skills and decision-making.

Although some individuals with frontal lobe injuries may have significant difficulties with everyday tasks, such as cooking, organising their paperwork or remembering to take their medication, they show little awareness of this and moreover, strenuously deny that they need any help or support.

The person should not be seen as knowingly/ consciously denying their difficulties or even lying. Their presentation reflects the fact that the areas of the frontal lobes that are responsible for self-monitoring and developing insight have been affected by their brain damage.

This is referred to as a 'paradox' because certain individuals can appear entirely unimpaired in an office-based assessment, yet have significant functional difficulties in everyday life.

Without specialist expertise in acquired brain injuries, it can be almost impossible to spot the presence of the Frontal Lobe Paradox because, in many cases, people will have preserved language skills and therefore appear remarkably unimpaired during a short one-to-one conversation.

How many people present with the phenomenon?

This is likely to found in a much higher number of people than you might first imagine. We have seen people present in this way, following brain damage caused by strokes, infections and blows to the head.

We have also seen this in people who have longstanding and poorly-controlled diabetes or forms of dementia that affect the frontal lobes of the brain.

The Frontal Lobe Paradox is a familiar term to neuropsychologists. Amongst professionals in this group it is well-known that an office-based assessment of an individual may give a poor and inaccurate indication of their functional abilities in everyday life.

However, the DoN has come to realise that there is very limited knowledge and understanding of it amongst other professionals and members of the public. 

The Frontal Lobe Paradox and the Mental Capacity Act (2005)

The Mental Capacity Act (2005) was developed to safeguard the needs of people who have lost the Mental Capacity to consent to certain decisions.

The Alzheimer's Society has provided a variety of resources about the Mental Capacity Act.

As most people are aware, community support in the UK is funded by the local authority. A range of health professionals (i.e. a GP or clinical psychologist) may recommend that an individual requires a care package or other forms of support following a brain injury.

However, local authority social workers and care managers need to conduct Mental Capacity Act assessments to ensure that the individual has the ability to consent to this type of care.

Local authority social workers and care managers usually conduct these types of assessments on their own because they are solely responsible for paying for the care (they are known as the 'decision makers' in these situations).

They tend to make their decision about an individual's mental capacity to consent to care (or to decline care) on the basis of a short face to face interview. They have the power to overrule decisions made by others.

What are the risks associated with the Frontal Lobe Paradox?

It is important to stress that local authority social workers and care managers are, in our experience, hard working professionals who are motivated to act in the best interests of those under their care.

The problem is that many of them receive little or no specialist training in brain injury. If they have not observed people with the Frontal Lobe Paradox struggle with everyday tasks, they may also overestimate their ability to live independently. More worryingly, they may misclassify them as having the mental capacity to decline care and support.

This situation can lead to people not receiving help that they desperately need. In the longer term, this can place them at risk of self-neglect.

This can be a frustrating situation for brain injury experts and also for loved ones who have seen evidence of the fact that the person is 'good in theory but poor in practice'.

We submitted several case studies to Baroness Finlay and Emma Lewell-Buck to illustrate the problems that this can create.

In a recent paper written by Melanie George and Sam Gilbert (2018), the authors note:

A key barrier to mitigating the risks associated with this issue is that it is little known outside of neuropsychology.

This gives rise to a 'double whammy' whereby most professionals but also the patients themselves are unaware of the problems.

This patient group is in particular need of advocacy and support. However, for reasons outlined in this paper, they are often the least likely to receive it.

What would the DoN like to happen?

We are contributing to a set of recommendations, requested by Baroness Finlay, which we hope will inform the current debate regarding the amendment to the Mental Capacity Act that is currently going through the Lords.

The DoN is working closely with other professional groups including UKABIF represented by Chloe Hayward and the Brain Injury Social Work Group represented by Dr Mark Holloway who plan to meet with Lord Patel, the new chair of the social work regulator in the UK, called 'Social Work England' in the near future.

Together with UKABIF and BISWIG, we will request that all social workers receive training on brain injury, prior to conducting MCA assessments.

We have also requested that MCA assessments routinely include information about the individual's ability to complete important tasks and maintain a safe level of independence in everyday life.

This would mean requesting results from assessments carried out by occupational therapists and seeking the views of family members and others who know the person well.
 

References

George, M.S., & Gilbert, S. (2018). Mental Capacity Act (2005) assessments: why everyone needs to know about the frontal lobe paradox. The Neuropsychologist, 5, 59 - 66.

Further Links:

The British Psychological Society (BPS) Division of Neuropsychology recently contributed to revised NICE guidelines on this topic which are due out in the next few months:

• https://www.nice.org.uk/guidance/indevelopment/gid-ng10009

Designations of the group

• Dr Katherine Carpenter, Consultant Clinical Neuropsychologist and chair of the British Psychological Society Division of Neuropsychology (BPS DoN)
• Dr Camilla Herbert (Consultant Neuropsychologist and BPS lead for the Mental Capacity Act)
• Dr Sam Gilbert (Associate Professor from the Institute of Cognitive Neuroscience)
• Dr Melanie George (Consultant Neuropsychologist from Kent Clinical Neuropsychology Service, KMPT)
• Dr Mark Holloway (social worker and specialist brain injury case manager from 'Head First')
• Chloe Hayward (UK Acquired Brain Injury Forum and the Brain Injury Social Work Group).