‘I’m giving Dad dignity through food’
When nutritionist Jane Clarke saw her ill father was struggling to eat, she devised recipes that made a difference, says Eleanor Steafel
It was sitting on a bench under a tree in the grounds of Chatsworth House after a dog walk that Jane Clarke first broached the subject of dementia with her dad. A retired teacher, Brian was only 64, but Jane – a nutritionist who, by then, had worked with dementia patients for 10 years – was beginning to notice a change in him. “We had already tried to have those horrendous conversations where he would say, ‘There’s nothing wrong with me, it’s just old age’, so I thought let’s just go to a lovely spot, which he’s very familiar with, and talk. We said: ‘Dad, we’re really concerned and we don’t think it’s just old age. You’re struggling.’”
Brian had always prided himself on being a skilled communicator, especially when it came to children, but his character was rapidly changing in front of his family’s eyes. “He was saying things he never would have said, being inappropriate, less tactful,” explains Jane. “He was becoming more extrovert, which you might think is a good thing, but I just knew something was going on.
“We got him to be assessed and they said that he had Alzheimer’s, but that turned out to be an incorrect diagnosis.
“They just left him on the Alzheimer’s medication but I wasn’t noticing any improvement in his behaviour, and his character was changing. I thought, ‘There’s something else going on here, this isn’t right’.”
Through her contacts, Jane – along with her mum, Patricia, sister, Ann, and brother, Paul – took her
‘I’m not saying food has the answer to everything, but boy it has a lot of answers’
dad down from Nottinghamshire to the London Neurological Hospital in Queen Square, where there is a specialist dementia unit. “We had different tests and they showed that the whole of his frontotemporal lobe had disappeared. On the imaging, it was just black where you’re meant to see brain. They told us it was frontotemporal dementia, which has nothing to do with Alzheimer’s.”
That was 10 years ago. Jane’s dad is still living at home, and though there is no cure for frontotemporal dementia, his condition is as stable as it can be. Jane had already worked with dementia patients for years before her own father began suffering from the disease, but caring for her dad has made her even more passionate about finding solutions to symptoms through food and nourishment.
“I’m not saying food has the answer to everything, but boy it has a lot,” says Jane, as she whips up an instant banana ice cream – one of the easy home-made treats she has come up with as part of a huge repertoire of recipes which specifically cater to the needs of dementia patients.
Jane believes that while it’s true there are a few key symptoms that tend to go hand-in-hand with dementia – making it a struggle for sufferers to eat and which are hard to treat with medication – that doesn’t mean we should ever just accept the inevitable and let patients fade away.
Difficulty swallowing, bowel problems such as constipation and diarrhoea, fatigue, memory loss – all of these can be combated to varying extents with careful nutrition. “Someone choking is not normal,
someone not drinking is not normal, someone fading away is not normal,” she says.
“People die of malnutrition, not dementia. That should never happen. It’s not a pretty subject, but it’s going on.
“All that is offered in our hospitals and care homes is mush and disgusting-tasting chemical drinks and baby food. It’s totally unnecessary.”
For Jane, it is crucial that effective, tailored dementia care isn’t limited to those who can afford it.
“We need to realise there are gorgeous meals you can make that are really easy. It’s not just about looking after patients who have a hands-on relative and the resources to pay for a private dietician.
“You can give dignity and you can give love and affection through food. You can support them so that they’re
not wasting away, not losing their muscle strength. There are so many things you can do, depending on what their body needs.”
On her website, Nourish, Jane has come up with a huge range of recipes that can help with different symptoms, including a soft, easy-toeat beetroot cake and a steamed lemon and buckwheat pudding perfect for people who are finding it difficult to chew and struggling with energy levels.
The site is free, and each recipe can be followed religiously or used as inspiration for something which you know your loved one might enjoy.
“Just seeing someone fade away is so distressing and horrible. And these illnesses are so disempowering for the carers. You need to believe you can make a difference through food.”