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‘LIFE WITH DEMENTIA IS STILL WORTH LIVING’
Dietician Jane Clarke on the importance of tapping into food memories
Acouple of nights ago, I phoned my parents for a catch-up. I speak to them often and see them at least once a fortnight, but anyone hearing the effusive response of my father Brian could be forgiven for believing the call marked the end of a long estrangement.
‘Oh, it’s just so wonderful to hear from you. I love you so much,’ he exclaimed over and over.
We Clarkes are a close family, but you’d never describe us as touchy-feely. During my upbringing, I can’t remember Dad ever gushing with praise, nor raising his voice in anger. A retired chemistry teacher, at 76 he belongs to a postwar generation that was not given to overt displays of emotion. My sister, brother and I would know, just by the way he looked at us, what he was feeling.
Today, however, Dad doesn’t hold back, which in one sense is joyous, but in another, absolutely heartbreaking. For Dad’s loss of reserve is a constant reminder of the dementia that is altering his personality, robbing us of the conversations we once had and eroding his phenomenal intellect.
Dad has frontotemporal dementia (FTD), a form of the disease that damages the area of the brain that manages our behaviour and controls our emotions. One classic symptom of FTD is a lack of inhibition. Another is a loss of short-term memory, and sadly medical research has yet to discover anything that can halt its decline.
But I can help Dad with a third symptom: his craving for sweet delicacies and his hankering for reassurance through dishes that remind him of his past. As a nutritionist, I know from the thousands of clients I have advised – and also through my own health challenges – the power of food to comfort and heal. And Dad’s illness has made me more determined than ever to help nourish those who are poorly and vulnerable.
It’s almost 30 years since I qualified as a dietician. My passion for all things foodie came from my Auntie May, a gorgeous teddy bear of a woman who always served fish and chips with fresh garden peas and made chelsea buns and melting moments for our holiday picnics. For Auntie May, who had no children of her own, food was about the giving of love and affection, and I knew I wanted somehow to emulate her.
At home in Nottingham, my mum Patricia did the family cooking. She was a music teacher and I inherited her creativity (I played the piano from the age of three and the violin at seven) but I had Dad’s aptitude for science as well. At Bramcote Hills School, where he taught for more than 30 years (and where I was among his pupils), Dad was known universally as Sparky Clarkey; he could be strict, but he was also great fun.
When I was 15, the good fortune that had underpinned my idyllic upbringing ran out. With the onset of puberty, I developed endometriosis, a condition in which cells normally found in the lining of the uterus spread to other areas of the body – usually the pelvis – causing inflammation, pain and scar tissue. One week in every four, I would be in such agony that I would have to be hospitalised and knocked out with morphine. I had countless operations to remove the rogue cells, but each time they came back with a vengeance.
The relentless cycle was physically exhausting and emotionally draining – not just for me, but
also for my parents, who were powerless to help. (Once I went to university, I stopped telling them every time I was admitted to hospital because I couldn’t bear to see them worrying on my behalf.) At the age of 20, I was told my only hope of a cure was a hysterectomy. I held out for another five years, until a hospital visit from Dad proved to be the turning point. I can still picture him, sitting at the end of my bed, sobbing at the sight of me doubled up in pain and high on morphine. The sight of my wonderful, stoic father so deeply upset was too much; I agreed to the hysterectomy.
Fortunately, my illness hasn’t prevented me establishing my career. After university, I began work as a state-registered dietician, believing that I would be able to bring nourishment and care to the hospital setting. I knew, through my years of admissions, what it was like to eat bland hospital food and I was convinced that I could make a difference. But I can see now that I was misguided. The reality was that feeding NHS patients was more about money than sustenance. I was forever being told off for talking to patients for too long and for asking what they would like to eat, instead of telling them what they were going to be given to eat. In the space of a ten-minute appointment, there was never time to build up a true picture of people’s symptoms and inspire them with ideas for the delicious food that their bodies needed. For example, the solution for someone who couldn’t chew was to place the entire contents of their plate into a liquidiser, whiz it up and serve it as mush, depriving them in one fell swoop of both dignity and pleasure (I fear this remains standard procedure in too many healthcare settings).
After my hysterectomy, I decided it was time to change the record. I went backpacking in
Jane’s parents on their wedding day in 1950, left, and, right, Jane with her dad at a Nourish afternoon tea this year
Thailand and spent three months working out how I wanted to live my life. On my return, I took out an overdraft and set up a private practice. My aim was simple: to treat people in the way I wish I’d been treated when I was ill.
To begin with, I was so broke I had to sleep on the floor of the practice rooms I had rented in Chelsea. But as I gained a reputation, I was approached by a young chef called Jamie Oliver. He was looking for a food-loving nutritionist (strangely the two things don’t always go together) to provide ammunition for his campaigns. I became nutritional consultant for his groundbreaking TV series Jamie’s School Dinners and co-presenter on another series, Eat to Save Your Life. My other high-profile work has included being David Beckham’s personal dietician during the 2006 World Cup (a tough job but someone had to do it).
Oh, and I also became a mother. Ten years after my hysterectomy, I adopted Maya. She was five months old and desperately malnourished when I found her in an orphanage in India. The adoption process was complex and tortuous and took almost three years. When I first brought Maya home, she was suffering from rickets due to vitamin D deficiency and was so weak she couldn’t support her head. Today, at the age of 14, she is a brilliant sprinter and a phenomenal horsewoman who is already nearly as tall as me and the light of my life. But that is another story.
Behind the scenes, the core of my work as a nutritionist remains my clinical practice, where I treat clients suffering from serious conditions, including heart disease, cancer and dementia. I help them manage difficulties such as swallowing issues, lack of appetite, taste changes and complex digestion problems.
You might think that my professional experience would give me a head start when it comes to spotting the signs of illness, but those symptoms are sometimes hard to acknowledge in those you love. Looking back, I would say that Dad first started becoming ‘not himself ’ in 2005, shortly after Maya came into our lives. He adored her instantly, just as I did. (Before I first saw Maya, I thought I would have to learn to love any child I adopted, but I was wrong; our connection struck me with the force of a lightning bolt.) To Maya, Dad is Poppa and, as I am a single mother, he is also the foremost paternal figure in her life; they share a powerful bond. Yet even as Dad reached out to Maya, I had a sense of him becoming insular and less able to engage with those around him.
He had taken early retirement in his late 50s and to begin with had big plans: he wanted to be a volunteer teacher in prisons. But it never happened. He seemed to be losing his confidence and was also suffering memory lapses. People he should have recognised – his former colleagues, neighbours, local shopkeepers – were confounding him. ‘I know I should know you,’ he would say, ‘but I can’t quite place who you are.’ To this day, thankfully, he still recognises his family. But, ever so gradually, he was becoming eccentric. If we went to a pub for lunch, he would wander off and start talking to other diners. To a shopkeeper who had a nose piercing, he demanded bluntly: ‘Why have you done that?’ And if fazed by a queue of people at the bank, he would cope by bursting into song: ‘Bring Me Sunshine’ is one of his favourites; another is ‘If You’re Happy and You Know It’.
He said and did inappropriate things. During one school holiday, Maya went to stay with my parents while I was working. On her return home, I noticed her fringe had been cut short and wonky. Her hair had been getting in her eyes, she explained, so Poppa had chopped it off.
My mother had to bear the brunt of Dad’s behaviour, but my sister Ann-Marie, who is a psychotherapist, my brother Paul and me were in agreement: he needed help. We took him out walking at Chatsworth – one of his favourite places – and broached the subject. It was always going to be an excruciating conversation and, of course, his immediate response was: ‘There’s
Most of the time, mercifully, Dad is happy in his dementia. We are very lucky
nothing wrong with me.’ But with our persistence, he finally agreed to go for an assessment.
The first consultant he saw eight years ago diagnosed Alzheimer’s. Dad began a course of medication, but it made no difference. If anything, the disinhibition, the singing and tendency to repeat himself (Dad now has a repertoire of six anecdotes that we have heard a million times) accelerated. Four years ago, we sought a second opinion from a dementia specialist. Tests confirmed FTD, one of the rarer forms of dementia.
There is no cure, nor certainty about his prognosis – apart from the fact that he will continue to deteriorate. Scans show that the whole of his frontotemporal lobe has already disappeared. Astonishingly, he can still recite the entire atomic table. He can also play Scrabble, and we discovered recently while playing another board game, Cranium, that he can spell words backwards. His hand-eye coordination remains sharp – he’ll beat anyone at snooker. And most of the time, mercifully, he is happy in his dementia. Many patients become depressed and angry, which is a painful burden for their loved ones, so we know we are incredibly lucky.
One time when dad might become agitated is when eating. He will ask ten times during a meal what is for pudding, because FTD has given him a craving for sweet foods and unless he knows there is a pudding ahead he doesn’t settle. Mum makes him fantastic treacle tarts – but always ensures he has eaten his main course first. When he comes to my home, I make him an open apple tart rather than one with double pastry. Dad isn’t overweight, but that is a risk with dementia as patients don’t always recognise when they are full. I also make him blood-orange cake – a current favourite – which I serve, not in great slabs, but in a small ramekin so it still feels like a special treat.
Dad and I talk a lot about food memories, such as eating knickerbocker glories (as children, we were allowed one per holiday). Sometimes when you ask a person with dementia what they would like to eat, it can be too much to process. Instead, I can point to a photograph and ask, ‘Would you like a ham sandwich, because you used to love those?’ and they engage emotionally. Just seeing a photograph can whet the appetite.
At many key points in my life Dad has been an inspiration to me, and now he is among the spurs for my latest venture. I have launched Nourish by Jane Clarke, an online forum to help people who are unwell find pleasure, comfort and, of course, nourishment from food. The aim is to create a community where friends can share ideas, experiences and recipes.
I’m being supported by some amazing patrons, including the restaurateur and author Prue Leith CBE, whose mother had dementia, Arthur Potts Dawson, an ex-River Café chef and prominent sustainability campaigner, and Patricia Michelson, award-winning founder of London’s La Fromagerie, a world-renowned cheese shop. We recently held an afternoon tea to celebrate the birth of the network and to highlight the challenges that can affect people living with serious illnesses. We showed how, with a few tweaks, everyone can enjoy delicious meals together. We are encouraging everyone to hold their own Nourish tea – there is a toolkit including recipes on the website to help you do it.
Too many people living with dementia believe there is no hope. I look at Dad and I know that is not true. With love and care, we can ensure he – and thousands like him – feel that life is still worth living. And I can’t think of a better way of doing that than through warming, delicious, melt-in-the-mouth, nourishing food.