Terry Jones’s dementia: a cruel fate for a man who found so much joy in words

Along with many people brought up on a diet of Monty Python, I was greatly saddened to hear that Terry Jones is suffering from primary progressive aphasia (PPA), a variant of frontotemporal dementia. This illness affects his ability to communicate and he is no longer able to give interviews. Michael Palin gave the best summing up of the situation this week, saying: ‘The type of aphasia which is gradually depriving him of the ability to speak is about the cruellest thing that could befall someone to whom words, ideas, arguments, jokes and stories were once the stuff of life’.

Aphasia is, quite simply, a communication disorder as a result of damage or injury to language parts of the brain. It is more common in older adults, particularly those who have had a stroke, but progressive dementia can also slowly remove the brain’s ability to use or understand words.

In a cruel twist, aphasia does not impair the person’s intelligence, but Jones now has difficulty speaking and finding the ‘right’ words to complete his thoughts. Palin has said that Jones no longer talks very much but remains able to communicate, although sadly this will continue to deteriorate as PPA is a progressive disorder, causing a loss of ability to talk, read, write, and comprehend what is heard in conversation over a period of time.

PPA is not Alzheimer’s disease, and many people with it continue to take care of themselves for longer than those diagnosed with Alzheimer’s. The memory loss associated with it can present later than with other types of dementia.

Although dementia and Alzheimer’s share many similarities, there are clear differences between the two — dementia refers to a collection of symptoms that occur together, such as memory loss and difficulty thinking, whereas Alzheimer’s is a specific disease that progressively destroys the brain, albeit now being the most common cause of dementia that I see in my surgery.

The fact that Jones is no longer able to give interviews because of how impaired his communication skills now are shows the extent of his disease progression. At its most severe stage it causes a near total inability to speak. It may be under-diagnosed, or incorrectly linked to other types of dementia, especially in its early stages, where its effect on language can be quite subtle. Initially there may be two types of aphasia – fluent and non-fluent. In the fluent variation, word production and speech may be normal or even increased, whereas in the non-fluent form fewer words are produced and speaking is difficult.

Unfortunately, whatever type is present the usual progression is towards a mute state where spoken or written language becomes impossible to understand, even if other aspects of behaviour remain relatively untouched. There is no specific treatment available for PPA linked with frontotemporal dementia.

For someone who has given so much joy to me and millions of others over many years through his use of words, wordplay and language in general, I hope that Terry Jones will rage as hard as he can against the dying of his own unique light.