My race to find a cure for Helen's dementia
Since his wife's diagnosis with dementia, Sir Jackie Stewart has devoted himself to finding a cure. The Formula One champion opens up to Gabrielle Fagan about how Lady Helen's disease is affecting the family
At the height of his Formula One career, Sir Jackie Stewart drew on his wife Lady Helen's memory to fuel his ambitions.
"We worked together as a team, her mind was so sharp," recalls the 77-year-old three-time Formula One world champion.
"She was known as one of the best time keepers and lap charters in the world. She could time things to the millisecond."
Today the couple, who met as teenagers and have been married for 54 years, are adjusting to a different phase in their lives, learning just a few years ago that 75-year-old Lady Helen has the "early stages of dementia".
"I've watched Helen change before my eyes over the past two-and-a-half years," says the Scottish driver, who was told of his wife's diagnosis during a routine check-up in 2014.
"Her razor-sharp mind was one of the things I fell in love with, and it's part of that mind that's vanishing."
While Helen's long-term memory is "amazing", her short-term memory is "shot". To the point where "95% of the time" she "doesn't accept" she has frontotemporal dementia (FTD).
A relatively rare form of the disease, it accounts for less than 5% of cases and most often affects people aged between 45 and 64.
It is caused by damage to cells in the frontal and temporal lobes of the brain, which regulate our personality, emotions and behaviour. The main symptom in her case, however, is her short-term memory.
"I don't know if she blocks it out because she knows there isn't a cure," he adds.
"She'll often say, 'I'm not ill, there's nothing wrong with me' and I say, 'baby, you have dementia.' She always replies, 'nobody has ever told me I have dementia'.
"Helen's a very proud woman, she certainly doesn't want sympathy. There are small signs lately that she is coming to terms with it. She told our son Mark the other day and she's told a couple of her closest friends."
Although Stewart can pinpoint moments of uncharacteristic abruptness, many of the signs like forgetfulness and repeatedly asking the same question are easily attributed to age, meaning the diagnosis came as a "total shock".
Determined to do whatever he can, Stewart has put up £1 million into founding a charity, Race Against Dementia, to promote research into finding treatment and a cure.
"My career in Formula One showed me how quickly change and innovation can happen and be made to happen when the best minds and skills are applied," he explains. "And this is what I hope for with this."
Understandably protective of Lady Helen, Stewart, who retired in 1973 and still works as a global racing ambassador, has made some tough decisions to raise awareness.
"I told her I was going to talk to people about the campaign and she said, 'that's terrible, you're not going to tell them that I have dementia, are you? People will think I'm stupid'," remembers Stewart, who was knighted in 2001.
"I told her, 'darling, I have to tell them to help others and hopefully find a cure'."
The couple have extended their home in Buckinghamshire and have 24-hour care to help with Lady Helen's condition. While he acknowledges how "fortunate" they are to be able to do so, daily life is still a challenge.
"She's not quite as stable on her feet now and for me the thing that hurts most is seeing her fall," he says. "She's fallen three times in the house, but luckily so far only got bumps and bruises. It's very upsetting to see.
"She's still Helen in so many ways. She dresses well and is still an enormously attractive woman, she just needs help with certain things. I'm sure her condition is very frustrating for her, she gets angry occasionally, but she's still a very happy girl.
"The first thing I do every morning is give her a kiss and the last thing I do at night is give her a kiss. She loves being surrounded by our family - sons, Paul (50), Mark (38), and grandchildren aged seven to 21 - as well as going out for dinner and seeing friends. She's been very courageous throughout this."
Poignantly, Lady Helen has always been the keeper of the family's memories, filling 18 scrapbooks with treasured mementoes of their life together - photographs, invitations, telegrams and newspaper cuttings.
"She's the heart of our family, she's the mother, the wife, the grandmother, she's everything," Jackie says. "They all love Helen as I do. We've had a wonderful life together and she loves going through those books with me, but we've experienced tragedy.
"We've had terribly hard times in our family. Our son Paul had cancer and we thought we were going to lose him, then Helen got breast cancer, and I have had a pre-cancerous lump removed from my face.
"Other than our love for her, we can't help Helen. I would love to find something to save her. That would be a miracle, but miracles do happen. Look at the progress they've made in HIV and cancer."
Contemplating life without Helen by his side is unthinkable.
"Losing her? I haven't faced that," he says. "I just think about making life as comfortable as possible for her. I think in the present and forward to a time when we can beat this illness."
For now, he's insistent on making the most of what they have.
"I just want to keep her at the centre of our lives for as long as possible," he adds.
"I make plans, but not too long term because Helen may not be up to them, but I still think about things we will do together. Who knows what will happen in the future?
"My biggest dream is that there will be someone who can unlock a cure or treatment. I'm devoting myself to fundraising to help make that happen."
If you would like to donate to Race Against Dementia visit justgiving.com/race-against-dementia