Still hard to swallow

(A note before I begin this blog: You should not consider anything written in this blog as medical advice for you or anyone you care for).

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at dysphagia (swallowing problems).

By a huge margin my most popular D4Dementia blog post is ‘Hard to swallow’, which charts the four years that my dad lived with dysphagia alongside his vascular dementia. In that blog I explained dysphagia as follows:

"Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia. 

"The uncontrollable coughing that often accompanies a swallowing problem, indicating that something taken orally has gone into the trachea (windpipe) instead of the oesophagus, can leave the person affected gasping for breath, red-faced and sweating. For anyone who has witnessed someone choking, it is a terrifying moment."

I wrote Hard to swallow in September 2012, less than 5 months after my dad had died from an aspiration pneumonia, so to say this is a topic close to my heart is an understatement. But it must also be remembered that with previous good support my dad lived reasonably well with dysphagia (and no teeth!), still enjoyed food and drinks and maintained mostly adequate levels of nutrition and hydration, so there is hope and positivity too. See my interview with Nourish by Jane Clarke for more insights into my dad's dysphagia.

In the years since dad died I have met numerous people who are living with dementia and dysphagia, and yet despite this swallowing problems are frequently the elephant in the room when thinking about the progression of dementia. Families often write to me, having read my Hard to swallow blog, saying that they simply had no idea that as their loved one’s dementia progressed they would develop swallowing problems.

As a result they feel unprepared, unsure of how to care for their loved one and, frankly, so frightened they worry about supporting their loved one to take anything orally, be that food, drinks or medication. Why we don’t talk about dysphagia more is a mystery to me - understanding how to support a person helps hugely in dispelling myths and calming fears. Dysphagia doesn’t have to be a watchword for unpalatable meals that look like vomit mush, or an undignified experience at every mealtime. As I said in my Hard to swallow blog: 

"Despite my father’s advanced dementia, the Speech and Language therapist was successful in assessing him when his swallowing problems were first identified… and gave us excellent advice that helped to give dad quality of life and give us confidence in caring for him."

That professional support is key, but as is so often the way as services are cut and becoming overstretched it can be support that is very hard to come by. Indeed, in some countries (I’ve had emails from around the world from families whose loved ones are living with dementia and dysphagia) such support doesn’t exist at all as someone who wrote to me from South America in 2016 explained:

"Unfortunately we don't have speech therapists who can guide me on how to handle my dad’s dysphagia. I import liquid thickeners to adjust the consistency of his drinks."

As if supporting a person with dysphagia isn’t daunting enough, to be in this position is intolerable. With such a lack of face-to-face professional support for many families, I hope that the tips and advice online - including those in my Hard to swallow blog - are helpful.

In the years since my dad died, my training and mentoring with care providers has enabled me to understand additional methods for supporting a person with dementia and dysphagia that go beyond those documented in my 2012 blog, and I wanted to share some of those here:

•   Straws can cause problems - Liquid drawn through a straw can often hit a person’s mouth faster than that taken without a straw, making straws potentially dangerous for some people with dysphagia. 

•   Be especially patient in helping the person to drink - Thickened drinks take many people with dysphagia longer than you might imagine to consume, and most thickeners also make drinks more filling. Therefore little and often is a really important motto for helping to keep a person with dysphagia hydrated.

•   Equally, for many people with dysphagia meals are often best provided little and often - The effort required to process food in the mouth and swallow it for a person with dysphagia is immense, far greater than for a person without dysphagia. So the idea of three set meals a day and those meals filling the person up isn’t a sensible approach. Try smaller portions, that the person can eat at their own pace in shorter periods of time, and follow up with further small portions throughout the day at times when the person is alert and correctly positioned upright to eat and drink.

•   Try using teaspoons to support a person to eat - This will naturally make each mouthful a smaller amount than larger cutlery will provide.

•   If the person you are supporting doesn’t like the taste of thickeners (and despite what the manufacturers say, thickeners do change the taste of foods and drinks), natural alternatives I’ve seen that are popular (though never tried with my dad) include smooth-mashed avocado, smooth peanut butter (providing the person isn’t allergic to nuts), thick Greek yogurt or kefir (if the person can tolerate dairy products), smooth-mashed banana and smooth-mashed or pulverised cannellini beans. Obviously the choice you make depends on whether you are trying to thicken a savoury or sweet food or beverage, and if that food or drink is being served hot or cold.

•   Some people have said to me that making foods or drinks sour, for example by adding lemon juice, helps to trigger the swallowing reflex.

•   Don’t eat too close to bedtime - Ideally allow 2+ hours after eating before going to bed.

For more information on nutrition and hydration, see my blogs ‘Hydrated and Happy’, ‘Food for thought’ and ‘The digestive balance’.

Until next time...

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