Chronic traumatic encephalopathy

Also called CTE, Punch-drunk syndrome

Brain degeneration linked to repeated head impacts, mainly in sport. It can only be confirmed after death, which does not make the risk imaginary.

What it is

A progressive degeneration of the brain associated with repeated head impacts over years, described in boxers, rugby players, footballers, American footballers and others exposed to repetitive blows.

Two things are true at once and both need saying. The association between repeated head impacts and later dementia is real and increasingly well evidenced: former professional footballers and rugby players have substantially higher rates of neurodegenerative disease. And CTE as a specific diagnosis can currently only be confirmed by examining the brain after death, so a living person cannot be told they definitely have it.

That gap is uncomfortable and is often exploited in both directions: dismissed entirely by those with an interest in doing so, or presented as certain to people who are frightened.

What is actionable is prevention and management. Reducing exposure to head impacts, particularly repeated sub-concussive ones in training, and managing each concussion properly with a graded return, is what the evidence supports.

Symptoms typically begin years or decades after the exposure ends, with mood and behaviour change often preceding memory problems.

Anybody with these symptoms should be assessed properly, because treatable conditions, depression, subdural haematoma, hypothyroidism, vitamin B12 deficiency, alcohol, and other dementias, are common and are not this.

Signs you might notice

Mood and behaviour change: depression, irritability, aggression, impulsivity, and sometimes suicidal thoughts. These often come first.

Memory and concentration problems, and difficulty planning and organising.

Headaches.

Later: more marked cognitive decline, and sometimes parkinsonism, slowness and unsteadiness.

Onset typically years after the exposure, and slow progression.

Urgent: thoughts of suicide, which are a recognised and serious feature; and any sudden change, which is not CTE and needs assessing for something acute.

A history of repeated head impacts plus these symptoms deserves a proper neurological and cognitive assessment, not a label.

How it can affect day-to-day life

Families frequently describe the personality change as the hardest part, and as something that arrived long before anybody connected it to a sporting career.

The uncertainty is its own burden. Being unable to be told definitively is very different from being told nothing is wrong, and clinicians should distinguish those clearly.

Former players often have complex feelings about a sport they loved, and about organisations they feel failed to protect them. That is legitimate.

Practical support is the same as for any acquired cognitive and behavioural change: routine, structure, occupational therapy, managing mood, and support for the family.

Some former players are eligible for sport-specific support and compensation schemes, and legal time limits may apply.

For current players and parents, the actionable message is the graded return-to-play protocol after any concussion, and reducing deliberate head impacts in training.

Supporting someone well

Get symptoms assessed properly. Rule out the treatable causes first; several are common and reversible.

Do not accept dismissal because it cannot be proven, and do not accept a confident CTE diagnosis in a living person either.

Manage each concussion properly: if in doubt, sit them out, no return on the same day, and a graded return over days.

Reduce repetitive head impacts in training, which is where most of the exposure happens.

Treat depression, sleep and alcohol use actively; they worsen everything and are treatable.

Ask for neuropsychology assessment to describe what has actually changed.

Take suicidal thoughts seriously and get help the same day.

Ask about sport-specific support schemes and note that time limits may apply.

Where to get help

A GP practice for assessment and referral to neurology or a memory service.

Headway on 0808 800 2244 for brain injury support.

Samaritans on 116 123, any time.

Alzheimer's Society on 0333 150 3456 for cognitive symptoms and family support.