Terry Jones first exhibited signs that all was not well with his health in July 2014. He and his close friend Michael Palin were performing with the rest of the surviving Monty Python’s Flying Circus troupe in a show of sketches and songs, Monty Python live (mostly) at the O2 in London.
“Terry was always very good at remembering lines,” recalled Palin last week. “But this time he had real problems, and in the end he had to use a teleprompter. That was a first for him. I realised then that something more serious than memory lapses was affecting him.”
Jones, now 75, later passed standard tests designed to pinpoint people who have Alzheimer’s disease. His speech continued to deteriorate nevertheless. “He said less and less at dinner parties, when he used to love to lead conversations,” said his daughter Sally.
Eventually, in September 2015, Jones was diagnosed as having frontotemporal dementia (FTD), a condition that affects the front and sides of the brain, where language and social control centres are based. When cells there die off, people lose their ability to communicate, and their behaviour becomes increasingly erratic and impulsive. Unlike Alzheimer’s, there is no loss of reasoning or orientation. However, planning, decision making and speech are affected, and patients often seem less caring or concerned about their family and friends.
Sally recalls that even though her father’s speech was faltering, he was still initially able to outline his plans and thoughts by email. “However, the emails slowly became more and more jumbled, and by autumn last year he had to give up,” she said. “For someone who lived by words and discussions this was tragic.”
Jones’s family revealed his condition to the public six months ago, and at last year’s Bafta Cymru ceremony in October, his son Bill had to help his father collect his award for outstanding contribution to television and film. The only words that Jones was able to utter were to tell his audience to “quieten down”.
Jones was not expected to talk to the press again – until last week, when his family requested an interview to help promote public awareness of FTD, a condition that affects tens of thousands of people in the UK but which remains a relatively little-known medical problem. Their hope was that information about Jones’s responses to his condition might help others cope with it.
“Many patients, particularly those in the early stages of the condition, are often unaware they have anything wrong with them at all,” said Professor Nick Fox, a dementia expert who has been involved in the diagnosis and care of Jones. “It is only later – when FTD is diagnosed – that you get some inkling of the root of their earlier behaviour. People may not show sympathy or concern for others, including their spouses – much to the consternation of the rest of their family,” added Fox, who is director of the Dementia Research Centre at University College London.
Loss of language nevertheless remains the most noticeable symptom of FTD. In the case of Jones, his dialogue is now restricted to a few words, usually uttered to agree with those who are speaking to him. Apart from that, he looks fit for his years. Dressed in black trousers, shirt and jacket and lurid purple socks, he cut a trim figure during our interview. He remains an enthusiastic walker, likes his beer and wine, and watches old films compulsively. Some Like It Hot is a favourite.
Palin is a frequent visitor to Jones’s home and the affection between the two men is clear from the start. They clasp each other warmly on Palin’s arrival and Jones looks relieved to see him. “The thing that struck me was how Terry reacted to his diagnosis,” said Palin. “He was very matter of fact about it and would stop people in the street and tell them: ‘I’ve got dementia, you know. My frontal brain lobe has absconded’.
“He knew exactly what was affecting him and he wanted to share that knowledge – because that is the way that Terry is. FTD may cause loss of inhibition, but Terry was never very inhibited in the first place.”
Palin and Jones first started working together in 1965 on The Frost Report, a collaboration that culminated in the formation of the Monty Python Flying Circus team in 1969. Jones was also co-director (with Terry Gilliam) of Monty Python and The Holy Grail before directing the Python films Life of Brian and The Meaning of Life. He went on to direct other films, including Personal Services and The Wind in the Willows. He has also written books on medieval history and the Iraq war (to which he was bitterly opposed).
The pair still regularly have lunch together. “We chat – well, I chat,” added Palin. “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.”
Only taxis cause problems. “He always wants to give directions and he hates traffic,” said Sally. “That is nothing new in a sense. He always knew a better way and would always let the taxi driver know that very early on in the journey.” At this point, Jones nods vigorously.
In contrast with other forms of dementia, walking or moving around is not usually a problem with FTD. “Terry still goes on very long walks across Hampstead Heath, often following the most obscure routes, and it is very hard to keep up with him,” said Palin. “His old pal Barry Cryer, the comedian, came round one day and said he would like to join Terry on a walk on the heath, and nothing would deter him. It was a muddy day and Barry kept slipping while Terry just walked on and on. In the end, Barry fell over so many times he gave up. He told me that there he was on his backside in the mud while his friend who had dementia was striding out miles ahead of him across the heath.”
Certainly Jones is no shuffling, helpless victim of cognitive degeneration. “He still enjoys his beer, his wine, his walks, his films and a good joke,” added Palin. “These are not things you associate with a depressive illness.” However, the condition can still cause problems, as Fox stresses.
“The frontal lobe contains the brain cells which act as our social censor,” he says. “Essentially it is a handbrake on our behaviour. Take that off and you start to act impulsively. People get into all sorts of trouble – particularly if they are also losing the ability to speak and to explain their actions.
“People with FTD end up in prison in this way. It is made worse because people with FTD have no insight into their condition. They are not aware that things are going wrong for them.”
This lack of insight can have profound consequences, Fox added. “The head of a company in the early stages of FTD has no idea that his insight has been compromised and can make decisions that have enormous consequences. There are companies that have lost all their money this way.”
A tendency to impulsive action is also noticeable. “Food can be a particular problem,” said Sally. “As soon as it is 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.”
And then there are other people’s perceptions of his condition, which can also cause distress. “Friends often ask: will he recognise me?,” added Sally.
“I tell them: of course he will. It is his speech that has gone. In fact, he loves seeing friends. His only problem is that he no longer has the ability to tell them how pleased he is to see them.”
It is a point endorsed by Palin. “I think that must be the most difficult thing – not to be able to say quite simply how you are feeling on a given occasion. We assume that he is happy, but that assumption could be wrong. We just don’t know.”
Certainly, it is hard to believe that Jones is unaware of his condition. However, he is clearly consoled by the support of his family, who help to keep his life enriched.
It is also obvious he gets strength from the presence of Palin. Towards the end of our interview, Jones reaches out to grasp his hand, giving it a good squeeze. The pair hold hands for a couple of minutes, a gesture that perfectly reflects their 50 years of friendship – and its importance in sustaining Jones through his tribulations.
Where to find help
• The FTD support group provides practical help and information for people with the disorder and their families. Their website gives details of meetings in different regions of the UK – an important way to meet others coping with similar problems that may seem very different from those experienced in more common dementias.
• A specialist progressive aphasia support group offers help for those whose speech and language are affected.
• Jargon-free research updates can be found at www.ftdtalk.org
• The dementia research centre at UCL has a specialist focus on young-onset dementias and is linked to the cognitive disorders service at the National Hospital for Neurology and Neurosurgery, which receives NHS referrals for people with FTD.
• Join Dementia Research enables people both with and without dementia to register an interest in taking part in research.
Terry Jones: ‘I’ve got dementia. My frontal lobe has absconded’
