They were once the golden couple of Formula 1. Now Sir Jackie and Lady Helen Stewart are learning to live with dementia. In the second part of our exclusive interview with Sir Jackie, he reveals how they’re coping

He may be a world champion and legendary figure in the world of F1 racing, but Sir Jackie Stewart admits he’s been on quite a steep learning curve these past two years – since his wife Helen was diagnosed with frontotemporal dementia (sometimes known as Pick's disease).

Sir Jackie, 77, always assumed that his career as a racing driver, at a time when the sport was at its most dangerous, had fully equipped him to deal with any crisis, but that was before he faced the challenge of dementia.

‘Dementia has been an education, not just for me but for the whole family,’ he says. ‘I’ve found that you can’t keep saying, ‘I told you this before…’ but it’s very hard when you’ve said the same thing three or four times. You can get frustrated by the short-term memory loss, but the frustration I feel must be miniscule compared to the frustration Helen feels.’

Lady Helen’s short term memory is poor, she also gets tired more quickly than she used to and her mobility has suffered, but she still appreciates and makes the most of her life. She remains an avid reader who devours the daily newspapers and adores the couple’s two Norfolk terriers almost as much as she does her nine grandchildren. ‘The dogs are terrific companions,’ says Sir Jackie, ‘They love her and she loves them – they sometimes even sleep with her. She absolutely loves the grandchildren too of course and lives for their visits.’

Sir Jackie is the first to admit that the practical difficulties of living with dementia have been far easier for him to deal with than most people. ‘I am in the very fortunate position of being able to pay for a live-in carer,’ he says. ‘I know we are privileged, it’s almost embarrassing for me to be able to do these things for Helen that many others couldn’t.’ As well as installing a non-slip bathroom, and a special bed which is lower and easier to get out of, Sir Jackie has also had to insist his wife wears sensible shoes. ‘She didn’t like the idea because she’s very elegant but her stability is an issue and a fall could be serious. Going up and down stairs can be a dangerous exercise for her without assistance. I have to keep her safe.’

Lady Helen often accompanies Sir Jackie to events and takes pride in her appearance. ‘Helen is still an extremely good looking woman who dresses very well. But she’s also a proud person and hasn’t fully accepted she has dementia. She sometimes worries people will think she’s ‘silly’ if they know she has dementia. I don’t want her to feel embarrassed because dementia isn’t her fault, people just need to learn how to deal with it.’ And generally speaking they have. ‘Since we started to tell people about her diagnosis they have been very understanding,’ says Sir Jackie, ‘which is just how it should be.’

Once a keen painter, Lady Helen recently became interested in art again. ‘She went out and bought paints and brushes the other day. She hasn’t touched her paint or easel for years,’ says Sir Jackie. ‘I’m hoping she’ll go back to it now, but she won’t do it if I ask her to, she has to find her own way.’
However, the activity that brings them both the most pleasure today is one which began as Lady Helen’s hobby fifty years ago. ‘Over the years Helen has created 18 amazing scrapbooks of our lives together,’ explains Sir Jackie. ‘They contain a huge amount of mementos, from dinner menus to airline tickets, taxi receipts, pit passes for races, and telegrams from all kinds of fancy folk like Steve McQueen, Paul Newman and Peter Sellers.’

Lady Helen was Sir Jackie’s right hand woman throughout his F1 career. ‘She had a laser-sharp brain,’ he recalls. ‘Helen was the original pit lane girl, my professional stopwatch who timed every single lap to within a split second.’

After a marriage lasting 54 years Sir Jackie knows they have much to be grateful for and the scrapbooks are a reminder of so many happy memories. ‘We both get fantastic pleasure from looking through them and Helen loves showing them to other people because she remembers every name, every location, every date – she is the expert and thankfully her long term memory is still very sharp.’

Whilst his wife remains well enough, Sir Jackie tries to remain positive. ‘Emotionally it’s very difficult because Helen has been a part of my life at home and at work for nearly 60 years. But you have to adjust to the reality of it – and not be embarrassed.’

Meanwhile, he is determined to do what he can to find new treatments for dementia and has launched a new charity – Race Against Dementia – to fund innovation in dementia research. ‘One in three people will get dementia in their lifetime – we’re facing an epidemic and I’m going to try damned hard to change that,’ he adds. ‘This crisis can’t be allowed to continue.’

To read more about Race Against Dementia, click here.