24/02/2017 12:27 GMT | Updated 25/02/2018 05:12 GMT

Why Don't We Talk About Dysphagia?

For my last D4Dementia blog of 2015 I decided to chart my most read posts. By a very large margin 'Hard To Swallow' - my blog post on dysphagia (swallowing problems) - was the most read entry then and to this day that remains the case.

In some ways I was surprised. Dysphagia isn't a vogue topic in the way that carer's issues, dementia language, changed behaviours, end-of-life care or dementia awareness is. Dysphagia lurks in the shadows, a condition that is very common as a person's dementia advances and their swallowing reflex weakens, but one that most families have never heard of and even health and social care professionals struggle to manage well.

Of course the problem with not talking about it is that when a person with dementia develops it, one of two things happen. You either go on a very steep learning curve as you try to support the person with their dysphagia, or you underestimate its seriousness and make a lot of mistakes, which can be very costly for the person with dysphagia when they most likely develop numerous, and potentially very serious, complications.

My father had dysphagia for the last four years of his life with dementia. A fairly long time, considering how frail and prone to infections he became. But my dad was never one to give up easily, and proudly maintained his status as the person with one of the best appetites in his care home despite not having a tooth in his mouth and living with dysphagia.

Looking back on our experiences, I'd say that managing dysphagia is a bit like being on permanent red alert. When the person with dysphagia consumes anything orally you wait, with baited breath, in case they start to cough, and as the dysphagia becomes more severe you realise that the person's own saliva, phlegm or most seriously vomit can wreak even greater havoc. Indeed, through what we believe was gross mismanagement of my father's dysphagia he developed pneumonia, from aspirating on his own vomit five times, and sadly never recovered. His death certificate said pneumonia and dementia (dementia at my insistence), but dysphagia could just as easily have been cited.

So it's serious. And managing dysphagia is a complex business that involves everything from the person's positioning and state of alertness, all the way through to the consistency of their meals and drinks, the way you assist the person to eat and the time you take, or don't take, supporting them.

As someone who loves cooking, some of the food that my dad was given in his years with dysphagia made me recoil. How two different care home chefs could interpret food for a person with dysphagia so differently is really quite stark; from a plate of what could easily have been the contents of someone's stomach, through to a meal that you might almost have been forgiven for not realising was modified for a person with dysphagia.

Each one of us knows what makes us love a meal, or hate it, and everything about the food experience is important - from the appearance and smell, through to the taste as you eat, the taste it leaves in your mouth after you've eaten, and the memory it gives you that will probably influence whether you'll eat it again in the future. When a person has dysphagia, however, most of these vital foody factors are bypassed for a simple: Is this meal safe for this person to eat or not?

It's madness when you consider that a person with dementia and dysphagia may well already have a flagging appetite. If the mealtime experience then ignores all of those vital factors that make food appetising and enjoyable it's no wonder that people with dementia and dysphagia often lose weight and decline rapidly.

Taking all of these challenges into account, I recently discussed my passion for improving the care and support of dysphagia with a lady who has combined her personal and professional experiences to try and innovate in this area. Professionally Jane Clarke is a qualified dietician and cordon bleu chef who's written numerous books and provided nutritional advice to celebrities. On a personal level, her father has frontotemporal dementia.

Jane has brought all of her expertise together for 'Nourish by Jane Clarke', a free website and online community that provides support, nutritional information and recipes to help people living with dementia, cancer and other serious illnesses achieve optimum nourishment and overcome the health challenges associated with their condition, such as loss of appetite, swallowing and chewing difficulties, frailty and sore mouths.

I know from the number of people who've contacted me from around the world since I published 'Hard To Swallow' that good advice and resources on dysphagia are hard to find. I hope that the spotlight Jane, myself and others are trying to shine on dysphagia will ensure that it comes out of the shadows further in the future.