There are more than 30 million people in the western world living with dysphagia, yet unless you know someone affected chances are you’ve never heard of it, writes business leader – Bernadette Eriksen.
I’ve always felt dignity is something we all deserve, no matter our prior sins or misdeeds and yet we see it stripped needlessly from people of any age and nationality on almost a daily basis.
It is especially true in the case of older Australians. We often hear them spoken about as if they are the bearers of some chronic condition called “getting bloody older.”
Yes, the experience of ageing can range from a graceful embrace of the grey through to utter brutality of the human condition. But dignity, at either end of the spectrum, must be sacrosanct.
And that urge to ensure seniors and others maintain their dignity has driven my career and pretty much my entire life for more than three decades through my work in the food space.
There is a silent condition that affects millions of people worldwide including more than a million in our own backyard. But I’ll bet you’ve never heard of it.
Speech Pathology Australia, in a 2016 Senate Committee submission on the future of Australia’s aged care workforce, said in Australia there were 49,000 stroke events recorded in 2012 and “the incidence of dysphagia following stroke is between 24,000 and 38,000 new cases in Australia every year”.
Dysphagia sounds simple enough – mouth or throat issues that make it difficult for a person to swallow. But the underlying causes and subsequent paralysing social effects are anything but simplistic.
Imagine, if you will, the anxiety-inducing feeling of choking every time you swallow saliva in your mouth. Now extrapolate that to simple social situations – enjoying a meal together as a family, sipping a drink at the pub, morning tea with friends.
Imagine, if you will, the anxiety-inducing feeling of choking every time you swallow saliva in your mouth.
Now imagine it every day, affecting every piece of food you eat and drink that you consume for the rest of your life.
Despite its seemingly simple explanation, dysphagia devastates lives and robs too many of their dignity.
People who have dysphagia often need to change their diet to pureed foods or thickened fluids for hydration, nutrition and energy.
Some common causes of dysphagia include stroke, some cancers, Multiple Sclerosis, Muscular Dystrophy, Parkinson’s disease, Cerebral Palsy, Motor Neurone Disease, Huntington’s Disease and natural ageing.
A few years ago, I met a lady with dysphagia who was living in a hostel. For her, sleep was rare because of the food being prepared for her. The endless, waking nights were maddening. For her family, watching it unfold was pure torture.
As part of our work at Flavour Creations I went in and worked with the rather excellent chefs and support staff including the dietician and speech pathologist to help prepare the texture modified food I felt she needed.
Similarly, last year I was in Victoria at an aged care residence and met a man who was completely mobile, but living with dysphagia. From my perspective it was simple to see he was a broken man at the end of a tether that was frayed and tattered from living with this condition.
He told me how it made him truly embarrassed, and would take his food into his room every night away from the other residents, where he would choke his way through trying to draw out sustenance. It should come as no surprise that he was also malnourished.
Sadly, these two cases are not uncommon. In the West, about 15 million people will have a stroke each year and half of them will have dysphagia as a consequence. One third of those patients then go on to live with dysphagia for the remainder of their lives.
But despite the sobering facts, the answers lie not just in helping these people live better lives but in the awareness of a condition that robs so many of their happiness and health.
Chefs and cooks, support staff and numerous others working in aged care worldwide do an incredible job of feeding and taking care of an unfathomable (and increasing) amount of people. But they need the support and answers to these problems provided to them so they may lead the charge daily.
A week after I had met that lady who had trouble at night, I thought I would pop back in and check how she was going.
Her daughter was visiting and I’ll never forget her face when she turned to greet me as I walked in the door. Tears streamed down her face. She ran to me and grabbed my hand with the kind of embrace that fills you with comfort.
“Thank you, thank you. This has changed my mum’s life.”
And that needs to be repeated. Case by case. Everyday.
Because it can change lives.