What’s the truth about Terry Jones’ dementia?

Newspaper headlines last week painted two very different images of the Monty Python star’s life with Frontotemporal Dementia (Pick’s disease). So which was the most accurate?

Last week Terry Jones’ family and friends decided to speak out about Frontotemporal Dementia, the condition which the 75-year-old Python star, writer and film director, has lived with for around two years. Their decision was prompted by the desire to raise public awareness of FTD, which remains one of the lesser understood forms of dementia. By speaking honestly, they hoped to help others cope and perhaps provide some comfort too. For whilst Terry Jones’ dementia significantly affects his life (most noticeably his language) it has not totally devastated it. There are, in fact, many things Terry Jones can still do: For example, he’s physically fit and enjoys very long walks across Hampstead Heath, he loves watching old movies – Some Like it Hot is a particular favourite – and is always very pleased to see his good friend and fellow Python Michael Palin who visits regularly. ‘Terry still enjoys his beer, his wine, his walks across Hampstead Health, his films and a good joke,’ Palin explained. ‘He is healthy, spritely and quite strong but he has lost the power of communication.’

So it was interesting to see how this update on his condition was picked up by national newspapers: The two headlines below sum up two very different attitudes towards dementia.

Whilst nobody would deny the pain and sadness a dementia diagnosis can bring to all those affected (friends and family included) the fear and panic this sort of headline provokes doesn’t help anyone. Focusing entirely on the tragedy of dementia might create more public sympathy (and sell more newspapers) but does it really help anyone currently living with the condition, including Jones’ himself? No. Nor does it give a fair or balanced picture to others about an illness that they – or someone close to them – may well develop.

This headline is far more positive and (dare we say it) more truthful. It provokes respect and interest, rather than an outpouring of public grief and despair. Surely this is the sort of response everyone with dementia would want – and deserve?

Terry Jones’ family and friends should be applauded for giving such an honest account of his daily life with FTD, including the struggles; his conversation is now restricted to a few words, which is extremely sad for anyone, but for someone who has built a brilliant career on his words and wit it is particularly poignant. His tendency to act impulsively can also be an issue, which many others will relate to. ‘Food can be a problem,‘ his daughter Sally explained. ‘As soon as it’s put down in front of him he will grab it and eat it. We made him a birthday cake a few weeks ago. He started to eat it before we could get him to blow out the candles.’

But they were also keen to keep this in perspective. His impulsiveness has not, for example, caused embarrassment when he’s out and about. ‘We chat – well, I chat,’ Palin explained when describing their regular lunches together. ‘But when the meal is over he makes it clear he has to move. He has to get to the next thing on his agenda and he just puts his head down and goes. I have never felt discomfited in his presence, however. There is no embarrassment. He doesn’t shout or show his bottom.’

On balance, it seems that Terry Jones continues to live his life as best he can, as do the people who love and care about him. For what else are they to do? A dementia diagnosis may be devastating, but life goes on – and, despite the obvious difficulties, it can still sometimes be quite a good life.