Thursday 17 August 2017

'People die of malnutrition, they don't generally die of dementia'

After tackling the health challenges faced by her dad when he was diagnosed with dementia, nutritionist Jane Clarke found the power of food helped to comfort and heal. Her mission now is to change people's lives through the power of nourishment

Nutritionist Jane Clarke believes you can make a difference for people suffering with Alzheimer's with the help of food. Photo: Andrew Crowley
Nutritionist Jane Clarke believes you can make a difference for people suffering with Alzheimer's with the help of food. Photo: Andrew Crowley
Alzheimer's is the most common type of dementia

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 a little more inappropriate, less tactful," explains Jane. "He was becoming more extroverted, which you might think is a good thing, but I just knew something was going on".

"We got him to be assessed and they diagnosed him with Alzheimer's, but that turned out to be an incorrect diagnosis.

Alzheimer's is the most common type of dementia
Alzheimer's is the most common type of dementia

"They just left him on the Alzheimer's medication and 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 Alzheimer's.'"

Through her contacts, Jane - along with her mum, Patricia, sister, Ann, and brother, Paul - brought him down from Nottinghamshire to the London Neurological Hospital in Queen's 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 could 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 of answers," says Jane, as she whips up an instant banana ice cream - one of the easy homemade 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 that there are a few key symptoms which tend to go part and parcel with dementia, which can make it difficult for them to eat and are hard to treat with medication, that doesn't mean we should ever just accept the inevitable and let dementia 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 - they don't generally die of dementia. That's horrible and that should never happen, but dehydration and malnutrition are going on in our care homes and our hospitals, and it's not a pretty subject, but it's happening.

"You're seeing them fade away, and all that is offered is mush and disgusting-tasting chemical drinks and baby food. It's totally unnecessary."

For Jane, it's crucial that effective, tailored dementia care isn't limited to those who can afford it. "Our call to action is that care homes need to realise that there are gorgeous meals you can make that are really easy. It's not just about looking after people who have a hands-on relative and the resources to pay for a private nutritionist. The care home and hospital settings need to change.

"People think there is no hope, but there is. You can give dignity and you can give love and affection through food. You can support them so that they're not fading away, not losing their muscle strength. There are so many things you can do, depending on what their body needs."

On her website, nourishbyjaneclarke.com, Jane has come up with a huge range of recipes which can help with different symptoms. 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."

Dementia | How food can help with symptoms

■ Swallowing difficulties - Dementia patients often lose the sensory stimulation in the back of the mouth that reminds you to swallow. "It's really horrible and distressing," says Jane. "I've started to notice now with my dad that he sometimes starts to choke, even with water. It's a cruel disease, so undignified.

"A glass of water is the worst thing, because a thin liquid is far harder to swallow, so you need to engage the muscles. Just putting a bit of elderflower in a glass of water can stimulate the swallowing reflex and mean they'll rehydrate."

When it comes to swallowing solids, Jane suggests sandwiches made with bread soaked in a little olive oil to make them go down easier. Using herbs, spices and citrus in the filling will help trigger the swallowing reflex. "It's my little shortcut," she says.

■ Bowel problems - One of the most distressing side effects of dementia medication can be constipation and diarrhoea. Someone with dementia may not be able to articulate that they are suffering from either of these awfully degrading symptoms, and may stop eating and drinking as a result.

"It could be as simple as encouraging them to drink a cup of coffee, or making a little cake packed with fibre to get the bowels moving if they're constipated, or making some stewed apple, which can be very settling on the gut because it contains pectin and is great for anti-nausea, which many dementia patients suffer from because of their medication."

■ Stress - Sitting down to a meal can be very stressful for dementia sufferers. If you are sharing a meal together, Jane suggests it's important to minimise distractions so that they can focus on swallowing. Don't attempt to hurry the meal along, either. "We juggle so many tasks when caring for someone that it can be tempting to hurry meals, which only increases the likelihood of upset, and for very little food to get eaten.

"If a meal is becoming challenging, it can help to step back for a minute, to find a moment of quiet.

"With us, we're a musical family, so if things are getting stressful, we'll put on some music and have a boogie with dad, which triggers endorphins in the brain, after which he's fine again."

■ Memory loss - It is one of the most upsetting things about the disease, but there are ways to stimulate memory through food, as often our most treasured memories of birthdays or holidays are linked to eating. "For me, childhood summer holidays are rekindled as soon as I think about knickerbocker glories and eating fish and chips out of the newspaper on the North Wales coast, while my treasured aunt and uncle sang with the choir on the seafront," says Jane.

"A personal food mood board made out of photos of favourite dishes, people and places can be a great way to communicate and also stimulate a jaded appetite."

■ For recipes and advice, visit Jane's website: nourishbyjaneclarke.com

DEMENTIA: THE FACTS

What is dementia?

Dementia is a loose term used to describe different degenerative disorders that trigger a gradual loss of brain function, including: memory loss; thinking speed; mental agility; language; understanding.

Is it the same as Alzheimer's?

Alzheimer's is the most common type of dementia.

Who gets it?

One-in-three people over 65 will develop dementia, and two-thirds of people with dementia are women.

Is there a cure?

Most types of dementia can't be cured, but if it is detected early there are ways to slow it down and maintain mental function.

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